Pre-existing mental illness now w/cancer

bellapazza

I did not read through the endless pages here, I'm sorry.  But new.  I see there is a forum and I've favorited it re: anxiety, depression, PTSD as a result of cancer, but I have had severe anxiety and depression my whole life, and now breast cancer -- I am 51.  I also have a limited support system and a very poor marriage.  My family was seriously dysfunctional and abusive.  No one left either ... which in a sense is good.  I'm an only child as well.

I don't know how to deal with this.  I have a therapist, am on psychiatric meds.  I'm awaiting an Oncotype Dx which if low would spare me that horror, but I've also been told I will need 5 years of Tamoxifen.  Apparently the side effects of that are anxiety and depression which I have anyway!

I am on three psych meds which apparently don't need to be changed, but I cannot function without them.

Is there another forum that deals with this specifically?  I will continue to post in the other forum.  I am also considering a Blog to add to a website I have about my experience with mental illness.

Thank you all strong women out there!

What a journey we all must take!

PeggySull

I haven't had a chance to read through earlier posts but I plan to in the next couple of days.

Just when I reached my new normal and my first thing besides fun things was to get my postponed medical appointments scheduled.  Some if not all of which I expected to be routine.

Internist ok.  Cardiologist supposed to be ok because I have this sort of routine aortic valve leakage and had to have a stress echo test that seemed to go fine.  This past Friday when iI went for the results I expected him to say see you in three or five years.  Instead he said I was going to have an aortic valve replacement in the next five years.  I was so blown away I couldn't even think of a question.  He provided some dx and tx info but I will need to follow up, etc.and  coordinate with my onc. And my husband is being an idiot.

I'm just sitting here. Crying and wondering what other shoes are going to drop at the endocrine MD and Gastro doc.  I've been physically healthy most of my life (emotionally, not so much), have rotten genes. And am generally feeling sorry for myself.  If anyone has gotten this far, thanks for listening.

Peggy

farmerlucy

Sorry Peggy -  I don't know why life has to be so hard sometimes. Crossing my fingers that everything checks out A-ok at the last two docs. Rest today, get some good sleep tonight, tomorrow regroup and put one foot in front of the other. Gentle hug.  We're here for you.

Anonymous

Peggy, it's good to vent and get those feelings out. I hope you get better news with your next two doctors. You are in my thoughts. {{{gentle hugs}}}

PeggySull

Farmer Lucy and SlowDeep,

Thank you for your kind words and thoughts.  Things will settle down I hope as the week wears on.  If I could get some good sleep...

Hope you two and the rest who are struggling are doing okay today.  

Hugs,

Peggy

Lilyluv

Hi PeggySull,  Hope you're feeling a bit better now.  I've just been looking at different topics and saw this was written awhile ago.  

Faithonfire

Hi peggy I am new too and I have had ptsd for over a decade now and just got diagnosed with stage 3 braca 2 invasive ductal carcinoma in june.

I understand how hard it is to have a thin grip on life before such a whopper of a diagnosis, doing therapy for a serious condition already then getting a diagnosis that changes your entire routine dropped on your head without warning!

I keep you all in my prayers and look forward to sharing some tips and laughs along our sea of tears in this long journey.

I was lucky enough to have my ptsd therapy in place before my diagnosis, years of cognitive behavioral therapy allowed me the ability to manage my symptoms one at a time as I receive treatments. They actually have cognitive processing therapy for chemo patients to aid stability with side effects setting off symptoms of other diagnosis. This kept me sane and helped manage each issue more effectively without the feelings of loss of complete control.

It's all about the little victories we find each day that keep one foot in front of the other, and I consider finding your topic here one of mine today! Thank you all for making me feel that my past struggles might make someone else's path a little easier. I've suffered enough for everyone believe me

auroaya200882

Hi Faith. Welcome to the thread I don’t know if Peggy still visits this thread the last entry was February 2014. My name isAurora and im a recovering alcoholic with 8 years of sobriety. I also have bipolar disorder and I take prescription medicine for it. Thanks to AA’s 12th step program when I received my first cancer diagnosis I did not loose my mind. To this date “talk” therapy works for me.

I’m glad you “revived” this thread perhaps we can help others and each other.

Warm regards,

Aurora

Faithonfire

Nice to meet you too

I just threw a shot out in the dark seeing if anyone would need or like to know that there are options available with long term diagnosis such as ours during times of systemic interruptions like chemo treatments or pregnancy that temporarily make conventional medications a less viable option vs risks that might not be properly understood as it pertains to the total health and quality of life issues that factor in to the informed decision making process.

I am very proud of you for your great achievements in aa that well surpass my own at the moment. I had 10 months alcohol free before I was diagnosed but chose not to do aa because I was working my cbt therapy at the time and had enough skills to keep me as out patient and continue the brutal chemotherapy prep diagnostics biopsies and every horrible medical test needed in record time!

This is not my first setback but what I learned in aa previously helped me to have an emergency plan in place to seek treatment and have my husband take care of our three teenagers and their busy schedules while I adjust to the medication changes and minimize the trauma as much as I can in the face of full symptoms flare ups.

It is hands down the hardest thing I have ever had to do, and right now they all feel as if I have abandoned them no matter how I try to explain it to them.

We all need to allow ourselves to ask for and receive the help we need to stay as stable as we can in light of our circumstances pre and post diagnosis and what kind of plans we can arrange just in case. I have always prepared for the worst and hope for the best but I'm no fool and the worst enemy to my success is me. Knowing better means we can do better. For me those were some hard lessons learned and I hope I can spare anyone my pain level with what I can do now that I wish I had known sooner.

I have to get up early for my surgery meeting before chemo treatment so I will be a wreck for the next few days and already have my therapy the next day, every time.

It really helps me to know we are not alone in this journey no matter what anyone we love may say or do to ignite an already critical moment. For me, the hardest person I ever had to forgive was and still is myself.

Best wishes and best of luck to you, I will check back as soon as I'm strong enough to

Foosfan72

Hi, I was wondering if any one on here is being treated for Bipolar II while going through treatment. I am stage 3a, have had a mastectomy, gone through chemo (a/c and Taxol), and started radiation last week. Everything has been manageable so far and my doctor has been closely monitoring interactions with medications, but I am terrified of the side effects that I may have with Lupron and Tamoxifen.

auroaya200882

Hello Fusban I hope I can be of some help but first two clarifications: I have bipolar disorder also known as maniac-depression Was dx before breast cancer. Don’t know what the II mean after bipolar I was never given a stage or anything like that. I also not familiar with Lupton.

So if we do have the same ailment the only bad interaction I ever found between my bipolar meds and cancer meds is that I was taken the antidepressant Prozac and that was contraindicated. My psychiatrist switched me to Cymbalta 60 mg and everything is ok. In fact Cymbalta also helps with the hot flashes and the joint pains from taking the anti-hormone Cancer meds.

I’m currently taking for bipolar: Cymbalta 60mg once a day; Divalproex 500mg ER and Risperidone 2mg. Risperidone also has an interaction but I forget which.

I’m currently getting IVchemo Abraxane and don’t have any side effects. As a matter of fact I think my Psych meds help with the cancer’s side effects. When I was dx with the cancer my Psychiatrist increased the dosage of the Cymbalta from 30mg to 60mg and the Risperidone from 1mg to 2mg.

In my experience the psych meds do not interfere with the cancer treatment.

There are a couple of good sites in the web which let you run your meds for interactions.

Good luck if you have more questions pm me.

Aurora

Foosfan72

Hi Auroaya,

Thanks for the reply. I had a typo in my post. It should have read Lupron. I am currently on Celexa 30mg and Lamictal 150mg. I had a bad reaction to decadron during chemo but I compromised with my oncologist to only take it with the infusion and not take the additional dose at home. I'm going to take your suggestion and look up interactions before consulting with my oncologist before hormone therapy starts.

Best wishes to you.

Paula

Faithonfire

hi, I am still kicking after treatment 10 of 16, but have had a few setbacks that really knocked me down and it's been hard to cope with it all.

I had a bad reaction to Benadryl with my taxol treatment that I had to endure for 3 weeks because of the respiratory risk with the drug. During this time I picked up a cold and despite clearing 2 chest X-rays and not missing a single treatment but I bruised my ribs on my left side from coughing!

I was adamant before we started my treatments that we avoid as many narcotics as possible because I was concerned about side effects and dependence being much greater for me living with ptsd during this health crisis.

After every alternative failed, I had to use narco 5 mg and 325 acetaminophen to maintain self care. After about a week the pain level continues to get worse and the narco does nothing to improve my quality of life at all now.

I have found that sea salt baths are most helpful and aromatherapy helps me stay calm as I pray for help and patience to make it through my endless days of therapy.

My therapist is very concerned that the recent opioid crisis is greatly changing how cancer pain is being handled and treated by doctors.

Having a ptsd diagnosis to start off my stage 3 breast cancer left me trusting on blind faith that all my hard work for years of documented therapy and medical records to confirm my repeated denial of narcotics for other medical options would be taken seriously and I would not be denied pain relief if I said it was too much to handle with any other alternative.

Last week I was, and with tears in my mothers eyes we sat together bewildered at the response we got after I was cleared for treatment. If my blood tests still look as good as they tell us, how can I be falling apart physically and emotionally this severe?

I am reporting my side effects and clearly showing my entire prescription history of every dose and duration to every specialty team I work with and I cannot help but to feel punished for being transparent and asking for help with severe breakthrough pain.

I have never displayed any drug seeking behavior despite multiple surgeries and trauma injuries in my medical history, and I was left feeling like a junky begging for relief because every last non narcotic option had been tried and failed to control my pain so I could even care for myself.

I felt ashamed that I could not just "suck it up" or that my ptsd was not even considered in the decision of how to address my pain and fear during treatment.

My therapist and I agree that I am not asking for anything unreasonable and the manner that my request was handled brings to sharp focus the need for sensitivity training in the medical community for mental health rights and patients with combined chronic diagnosis having treatments that disrupt prior mental health treatments already being used at the time of additional diagnosis to be treated for the entire prognosis simultaneously.

This issue is very personal for me, I am a very strong advocate for mental health and very dedicated to making this an opportunity to start some important discussions about the critical issue of how to handle being put in severe pain after being told you cannot have relief provided by the very doctor that promised to protect you from that breaking point.

After all the pain fear shame and guilt I have had to endure in my life, nothing broke me more than being made to feel that for being honest about what I am feeling and asking my doctor that I trusted to save my life for help and being denied without explanation or a word face to face.

It's very fortunate that I have a great therapist to help me through this crisis, but I felt this was important enough to share with you all so together we can change the standard of care for anyone who feels that they are not receiving the quality of care they deserve because of combined diagnosis.

I will try to stay strong and let you all know how surgery goes once I find the right team of doctors to use for my double mastectomy and reconstruction but after my first appointment went so awful I can hardly bring myself to think about that yet.

I don't have the strength to tell that tale now, and until I find any good from it to share I will keep it to myself and pray nobody ever has to be made to feel the way I was by being given incorrect information in such a manner by a doctor claiming to have had breast cancer

auroaya200882

Faith on fire im sorry you were mistreated the way you did. I’m lucky that my pain is controlled by 800 mg ibuprofen because I am a recovering alcohol and pill addict. I also tell all my doctors my pre existing mental conditions and thankfully I’ve been lucky and I feel they understand me.

My only suggestion is if your current team dos not treat you with respect to your personal needs I would look for second or even third opinions and switch to an oncologist who understands.

Thank you for advocating for mental health. Now that you have to deal with breast cancer in addition to pstd you are going to self advocate also in that area.

I’m sending you cyber hugs!

Aurora

Faithonfire

thanks so much for all the hugs and encouragement! I am still fighting the good fight and my therapist completely supports me in my struggle to keep the medication to a minimum without compromising the quality of care I receive.

I had 10 months alcohol free before I was diagnosed without aa so I am sure it won't be a problem to handle the pain medication after surgery with a plan in place now to address it as well as the shifting industry standards on pain management in general and how to ensure doctors are held accountable for their decisions on drug choices in a more public manner for transparency in treatment for each patient!

I hate to be turned in to a tattle tale this way, but if a stage 3 cancer patient with complications does not deserve pain medication to treat the side effects of chemotherapy drugs they are all too happy to give me then who does?!?!

Those are the questions nobody wants to answer, and that's the real problem driving the national crisis of addiction that puts the blame squarely where it belongs! It is not my fault I need them, because I didn't need any until treatment started and not being treated at all is not an option I will survive!

Being expected to just suck it up and accept no explanation why is a level of disrespect all too common in doctors that WILL no longer be tolerated in any professional setting.

As a parent I feel active shaming would be most effective for social enforcement of morality in a field so painfully devoid of personal accountability for their direct effect on people's lives. The letters md after a name are just a description of job skill, and makes no person above reproach for their personal or professional behavior.

TIme we make that reality as painful as the conditions that demand their care

Faithonfire

Thank heaven I made 11! I had treatment on Halloween and dressed up as eeyore so it was a nice subtle commentary on my outlook on chemotherapy lately.

So after I put my foot down about being told my pain was not valid enough to treat properly when I asked at treatment after clearing my 3rd chest X-ray in 3 weeks I bet I glow from space by now!

I took a trip in to the emergency room for a Ct scan Friday this time and I was ok but in visibly bad shape enough to get some more appropriate pain options like a lydocane patch for my left side until I get in to palliative care before surgery. This had a nasty tendency to be so overbooked that patients can't get in for pain management until chemotherapy treatments are almost complete in many cases.

Oncology Doctors ditch any pain med request to an office the patient cannot get an appointment with until the pain is unmanageable due to lack of proper care by direct doctor causing pain with the treatment given to patient!

Everyone knows how much chemo hurts and sucks so much to be told to just suck it up because it only hurts if we acknowledge it does! I have a very high pain tolerance fortunately but extremely low for indignant lack of compassion!

To have a separate department for pain management that patients can't get appointments to instead of leaving that to the treating doctor's discretion like any other facility? It makes no sense to anyone except the doctor and their ability to manipulate care issues like pain management by claiming they do not have the ability to properly manage the drugs that treat pain, only cause it!

Not what I signed on for in any circumstance and I am extremely vocal about the attempts to shame me in to accepting the level of pain I was in because my doctor didn't feel like reporting the severity of my issues related to my specific treatment. I was on much stronger drugs the first 8 weeks and felt nothing close to as bad as I am now that it was switched to just taxol.

Taxol is a new level of raging hell I never knew existed and the more problems I am experiencing each week the more I am pushed to finish out my last 5 treatments and just be done! Don't have much of a choice considering how I have to pick my battles here, but I will see to it that ALL my symptoms are directly reported along with a professional review of my medical report upon completion.

I think that kind of determination will reshape the healthcare experience by keeping doctors more aware of the direct concequence of their specific drug choices should be based on the patient medical profiles and the best options on the planet instead of what smug drug company representatives give for filling quotas of their "industry standard" products and prevent any research proving validity to serious side effects or how long one must suffer from them to be considered permanent!

Nobody likes a sucker punch, and I probably would have gone about the issue in a less hostile manner if it were not for the cheap attempt at character assasination I was made to feel for my persistence.

If me asking not to be in pain during treatment makes me a junkie? What does that make the person I pay to put me in pain but refuses to relieve it as promised? Disgraceful!

In breach of contract to say the very least... but the charges get as large as their egos because the world does not need people practicing medicine just to get rich at patients expense.

Ha, after winding me up that far I bet the one question that will remain to haunt them the longest is what if we had just done our job without pushing their version of morality on me for reporting severe symptoms instead

Tigger51

Hi

I am in the beginning of this difficult journey with preexisting bipolar and now stage 1 breast cancer. I am petrified beyond belief to even try hormonal treatment of any kind. Only my psychiatrist has any understanding of my immobilizing fear. I. Have scoured the Internet for any information regarding hormone treatment and bipolar to only find two articles and a psychiatric oncologist who told me we have lots of meds to control symptoms. I am on five meds already to control my bipolar. HELP

auroaya200882

Hi Tigger welcome to the thread but I wish I was under different circumstances. I’m bipolar too which is controlled with Cymbalta 60mg Depakote 500 mg and risperidone 2 mg. I totally understand your fear but let me tell you that I’ve been navigating these diseases for7 years and I only had problems when I ran out of insurance and I ran out of my meds for bipolar I was without them for a month and I don’t have to describe the hell my life turned into on that month. After I got back on the meds things got bettter and have stayed the same since. The only contraindication I found was when I was taking Prozac and tamoxifen (one of the anti-hormonal) but I went to my psychiatrist and he switched me to Cymbalta. Let me tell you Cymbalta is the bomb. Not only helps control my mood swings but it helps with joint pain which can be caused by the anti- hormonal.

Please try to overcome your fear as nowadays breast cancer is controlled even at the late stage like I’m in.

Don’t hesitate to come here and share and if you need help I’ll try to help in anyway I can.

Aurora

Faithonfire

hi tigger,

so sorry you are joining us on this long road but I hope a few things I have learned so far might help a little.

I had ptsd for at least a decade before stage 3c breast cancer and had been completely medication free for years using only cognitive behavior therapy for symptoms before my diagnosis.

Needless to say the combined diagnosis left me in a position where that was no longer a viable option for me and some of the side effects of the nessicary medication during chemotherapy like taxol or steroids made my symptoms infinitely worse on top of new awful things I have never experienced.

I found it critical to have a great therapist see me every week to help me keep it together and stay positive in a way no family or friends can. He helped me understand what is happening to my body and mind at the same time as we make sure the treatment plan and goals are followed by the entire cancer team.

That little ace in the hole is invaluable when challenging treatment decisions and advocating for the best care possible. It gives me the strength to focus on healing myself.

I hope you find everything you need to aid you in your treatment and healing also, I'm happy to answer any questions you think of about new options I have had experience with.

blooming

Hi All,

I'm a seeking some help about the issues of depression (or bipolar depression) and aromatase inhibitors as I prep for a visit to a MO for a second opinion (urged by my other docs because the first MO suggested that I take Tamoxifen even though I'm postmenopausal). Sorry if others have addressed these issues.I've tried to comb through other posts on bco.org but I'm feeling overwhelmed!

I just found this thread about pre-existing mental illness. I realize that situations differ according to specific treatments that each of us needs for our breast cancer and for our specific mental health issues. At this point the treatment issues for me focus on hormone suppression.

My pre-existing Issues:

• Mood: I have longstanding depression (reclassified at one point as BP type 2) that has been very well-controlled for years on lamictal (typically used for epilepsy that stabilizes mood). I have not reacted well to anti-depressants especially to the newer ones now being tried to aid with joint pain associated with AI.
• Other Health:I have joint and orthopedic pain, especially arthritis in knee and spine (stenosis and disc problems) that affect my mobility and my ability to exercise. I am overweight with type II diabetes (currently controlled with diet alone).I'm concerned about the potential side effects of hormone suppression and the ways that hot flashes and lack of sleep could aggravate my depression and make it difficult for me to concentrate on work responsibilities.All in all, I'm worried that the combination of factors could lead to a very unhealthy spiral, making it difficult to exercise and to watch my weight, etc.

I reached out on bco.org in April.(Since then, I've been going through other things and now am about to start AI.)I'm figuring that others might have some thoughts. I've just tried to identify medical literature about depression and hormone suppression or AI and I'm feeling a bit overwhelmed.

• Have any folks with major depression, esp. BP 2 depression, come through without SE's. Was this serendipitous? Are there any steps you took to minimize mood SE's?

• Did any of you see a psychopharmacologist or other specialist for consult to help with choice of hormonal medication **or** for protective strategies (meds or otherwise)?
• In the hormonal therapy comparison chart, only one med —not an AI but Tamoxifen – is listed with mood or depression SE's. Are those with depression more vulnerable to mood SE's or so some experience mood SE's but not enough folks that it's listed in the comparison chart?
• Any complementary techniques help?(Accupuncture, tai chi,
• Any other advice?I think I saw some folks using benadryl to help with joint pain.Gee, that could help in long run.

I'd appreciate any ideas or insights! I'm going to check for other relevant threads but please do let me know if you think I should be posting this on a different forumThanks so much.

Blooming

auroaya200882

Hi blooming I have BPD and I’m takin 500mg of depakote for mood swings I’m also taking 60mg Cymbalta for depression and join pain and risperidone 2mg it has kept me stable during my 4 years as a stage IV breast cancer patient the only difference is I went to my psychiatrist and he switched me from Prozac which had contraindications to the Al I was taking and he switched me to Cymbalta first 30 mg and upon further examination raised to 60mg that was 4 years ago and everything good. I suggest you contact your psychiatrist before starting Al I too am overweight and the Als did made me rounder around the middle but that is a se that many patients get with or without psych problems. Having a good psychiatrist and counselor that are well versed in breast cancer would be great.

If I was you I wouldn’t worry too much right now the important thing is to bring the tumors down and the cancer cells out of the way. If you have any questions you can PM.

Others may be able to help you.

Aurora

Faithonfire

dear blooming,

I welcome you here and wish you the best of luck with your journey.

I have had a lot of experience with psychiatric medication because I have literally tried almost everything on the market in the last decade or so for my ptsd symptoms and I highly recommend seeing a neurology specialist if you do not find medication that works for you. They have some new options for symptom and active brain imaging that better demonstrate breakthrough symptoms of current medication.

I too tend to stick to older classes of drugs also because I am banned from certain classes completely after severe reactions.

I had a seizure on Chantix when trying to quit smoking and am now banned from Wellbutrin class completely because off label use does not disclose risks the same way.

I've heard great things about deoakote working wonders but wasn't right for me. I used lithium and risoeradol for 3 years but it was like living life underwater.

Fun fact about risperidol 2 mg or over for mothers of young children... it turns lactating back on and is toxic to child.

I get zofran with my weekly chemo and it really helps keep me still enough to treat because I have to surpress the urge to run away from people who want to put poison in my body. I know it's what I have to do to survive so we all have fun with it.

I am on taxol and I would NEVER recommend it to anyone! I think it should be pulled off the market because side effects were so bad my therapist documented it to report to state medical board because it scared us both so much when I turned suicidal after about my 5th treatment on it because I would never hurt myself EVER and these new dominating thoughts were NOT a part of my ptsd for over 10 years before I started taxol.

It was very frightening and my therapist was critical to helping me stay at home as we stabilize instead of needing in patient psychiatric services because of the current industry standards of care are based on outdated biased research instead of the best options in the world used by other countries that don't market drugs and healthcare services like a commodity that openly profits from failure to disclose facts about their products.

I found a nurse coordinator to help with keeping my appointment schedule invaluable to me with chemo brain I'm lucky to find the right door!

And the greatest peace of mind I found with pill management was an app that I could input exact time and dose of everything and all my doctors could check it along with my chart online so we could accurately track consumption rates, pill counts, interactions and my own sanity knowing I can check when I last took what instead of fear of not being sure and making a mistake that could land me in the hospital!

I hope some of that helps give you a few new options to ask about at your next visit and I will be praying for you!

I have my last chemo treatment next Tuesday and I am NEVER doing chemotherapy again!!!!

If I had to do it all over I would have definitely done surgery and reconstruction FIRST now that I can prove our entire family is braca 2 estrogen positive and I have other organs that have to go soon also since I am unable to have any more children and my accelerated risks with my diagnosis.

Hormone therapy meeting is post surgery in about 2 months so I will let you know if I hear anything helpful but hands down taxol is the WORST for hot flashes and I average about 10 every 24 hrs lasting anywhere from 1 to 20 min and I soak anything I am wearing in sweat every time, it's insane! I am also fairly small now, 5'7 and 125 lbs so that might make it worse but 12 years ago I was 240 lbs when I gave birth to my son and had gestational diabetes twice but after birth my body was fine and never turned in to permanent type 1 or 2.

I am still a pack of day smoker though but of all the reasons I have cancer... That's NOT it! It does raise skin failure rate on radiation treatments about 5% and every surgeon balks at increased risk factors also ultimately it is a reality that must be openly discussed to avoid complications and spare everyone quitting lectures because even quitting today does not erase enough damage in time to be anything other than the illusion of moral superiority from those lacking such an addiction and I need a position of power while treating you.

Manners are free and you would think people who spend that many years in school to have that job would know that.

I am all too happy to be instrumental in the sensitivity training programs they are creating to forever change their industry standards of care and EXACTLY who is responsible for setting such precedents will be held directly accountable for results in a much more public manner than they are currently getting away with on our dime!

I will make sure no other patients have to go through what I did because I was underestimated for lacking a formal education and still knowing about new treatments and options they didn't offer because it's not the industry standard recommendation at this time despite legal standing for cancer treatment in this state!

I will use their favorite tactic in a much more public manner, SHAME on them for taking advantage of their position for profit over patient quality of life in treatment

Faithonfire

I apologize if that last post was a little too intense and upset anyone now that I have my meds under control I can function a little better.

I am so terrified of having surgery it's hard for me to trust anyone with my unconscious body. I was fortunate enough to be awake for my last 3 surgeries with the birth of my children so to know I will be alone and have nobody watching over me during my double mastectomy and reconstruction is almost more than I can bear.

I actually had to update my living will to amend the demand they save my sons life instead of mine if anything goes wrong in surgery and that was 12 years ago, ha!

I am small stature now, and after topping out at 240 before birth with my son I was 105 when I was diagnosed in June. I didn't try to loose weight at all I had a 22 cm hole in my abdomen that was fixed under my c section scar the same day and we both made it off the table Alive so job well done by all!

The fact that I didnt breastfeed him was unavoidable and I was told to bind off and got several calcifications and had then tested repeatedly all benign and considered nothing more than cosmetic damage as industry standard of care dictated at the time.

If only we knew THEN what we do NOW right? Fat lot of good that does me now, but I made sure it won't happen to anyone else in my family. I am braca 2 like my mom and the insurance company that refused to pay for my mothers test 3 years ago just covered 5 more tests now and my children whenever they ask for it.

I thought it was fair, I'm not looking for anything we didn't deserve sooner. I don't want money, only to keep my family and the rest of the planet safe from the outdated industry standard of care I was forced to endure out of greed and intentional ignorance.

It's a good start anyway, and i finish chemotherapy December 5 yay!! I just can't wait for that!!! I will feel a lot better about having to do the surgery next when I start healing!

I keep you all in my prayers and will be back to share my celebration soon and no more negativity I promise

auroaya200882

Faith on fire don’t worry this is the place to vent. Sending you good vibes for your surgery. Believing in a Higher Power orGod as you conceive Him or Her to be is a step in the right direction to trust in your surgery. May all go well.

Aurora

Faithonfire

I am SO excited to FINALLY have some great news to share with you all!

I finished chemo on the 5 th, last Tuesday and this week got to go in for final blood tests and a good show of complete palatable mass reduction!! Can't feel any tumors now just pins where they WERE!!! I might loose less than 5 lymph nodes on my left but won't know for sure until they see it in surgery.

A 98% clearance rate or higher makes radiation therapy unnessicary for me so fingers crossed everyone because we won't know that until after surgery and everything is measured.

I was also told not to be surprised at the numbers if they show the tumor is bigger than initial measurement because sometimes as they deflate the sack containing them squishes around the muscle that hid them initially in my case. So a 4 cm tumor might come out as 6 cm but only empty and flat tissue instead of lemon size in diameter. That does not mean treatment wasn't a success but makes it a little harder to understand.

Trust me it was the funniest thing for me to watch them REALLY try to stick their hand through my chest in my armpit and feel only the pin like I did, it is kind of like hide and seek with all my extra empty skin in my breasts but no denying the amazing results!!!

I was blessed to be matched up with a fantastic reconstruction surgeon that isn't thrilled with my physical condition but now is convinced I can handle anything she needs to do or decide on the fly based on what she sees in surgery. We are both realistic about the options I qualify for as well as what options are left if we are faced with the worst case scenario. I found this approach very comforting and helped me make informed decisions in advance just in case so we can all walk in to surgery confident and safer than I have ever felt about having ANY surgery before.

My biggest challenge is to gain as much weight as possible to give her more to work with!! I weighed in yesterday at 126 so I'm hoping for at least 15 more to use for filling in around the spacers but no idea what size I will be after, skin saved will dictate that but reality says it will be around a c like before I had kids.

I can finally be stress free about the rest of my treatment so I can heal as fast as possible!

my family situation has not improved I am sad to say, but my kids will understand one day why I had to leave to attain the proper care in time to save my life.

That will be little comfort to me when I can't see or hug them for the holidays and my birthday this year, but I am hoping for at least a phone call that's not them cursing at me even if they won't sing to me like we used to.

That's the result of trusting my husband to take care of them when I got too sick to care for ALL of them. I am viewed as a horrible wife and mother because I got sick and could not attain proper care in my state that was totally bereft of funding for mental health resources of ANY kind.

I'll show them who deserves their hatred for that, as well as social justice for believing they would escape jail time for theft of state funding for mental health programs that never exsisted!!

I can't think of any other way to institute real change in healthcare or politics without having to stand up and tell my story once I am strong enough. I never would have been able to do that before watching all of you be so brave and supportive and encouraging me to stay strong throughout the worst health crisis I have ever faced. Bless you all and Happy Holidays

Krispiemae

I'm in Ohio, the backlash from the opioid epidemic is insane here. In the hospital, immediately after a bilateral mastectomy with immediate diep flap reconstruction, I just about had to beg for pain meds. I had one particularly awful nurse tell me "I have seen other women go through this with nothing stronger than ibuprofen" . If I could have gotten out of bed myself I would have hit her. Needless to say I am still a bit snarky about all of this.

Krispiemae

I guess I should add I'm bipolar II with anxiety issues and panic attacks. Before dx I was relatively stable in my meds. I take buspar, trazadone, welbutrin, and xanax.

Faithonfire

Hi there Krispiemae!

I love the name by the way! I am not far but a bit north of your state where things are a little more sane about the whole issue for certain golden ticket patients like me.

My diagnosis is the proof I need these medicines and to deny me access to them is criminal! It does NOT matter what state I live and vote in or where I choose to stay while seeking treatments. this is my basic right as a disabled patient and anyone who dares impune my honor for failing to bow to their federal decree of martial law on anyone's right to the proper medication without their blood money regulation blessing first!

I was ptsd for over a decade before my stage 3 cancer diagnosis so I already had a therapist neurologist and general practitioner all rolled in to one amazing little office a stones throw from home so he could squeak me in for a few quick tests between shifts as diagnostics took MONTHS and help me stay employed with 3 teenagers and a husband that emotionally abandoned me entirely and did not believe I was sick but being a drama queen for attention as I was DYING to keep up with such unrealistic hostile conditions I could not stay home with people I could not trust no matter how much I love them and they've decided to hate me and not speak to me at all now.

It's better than being the source point for an overdose no matter how much they hate me for being right and removing the temptation entirely by staying with my mother and using her same team of doctors that cured her breast cancer 3 years ago but failed to do the braca 2 genetic testing that insurance didn't consider " medically relevant enough"so I decided to show them the life they bet on that statement is pretty MAD and worth covering my ENTIRE family free of charge to the most distant cousin whenever they wish NOW.

That was a nice start to making my point during chemo treatments .Anyway (sorry to jumble around a little but it's the meds)

I failed to get in an appointment with the palliative care office until my 14 of 16 chemotherapy treatments! This little holy grail office is the dignified intelligent pain option available for severe cancer pain without ANY hassle about guilt or shame for needing medication to treat the pain the other medications you MUST take to live CAUSE! They help decide options and dosages on current body weight and blood levels each visit teaching you how to use these safely and not overlap or overdose so I feel SO much relief I can still perform my own self care completely after surgery.

Before I got that appointment I was left to the mercy of the doctor in charge of chemotherapy for ANY pain or nausea relief going in my pre treatment cocktails bag before infusions and pushes so they only gave me enough to get through treatments!

After getting a nasty cold but clearing 4 chest X-rays for treatments to stay on schedule and a MRI in hospital for bruised ribs from coughing crying and barfing that she FINALLY coughed up the top level narcotics (narco is first offer)after one HECK of a scolding from my mother and the er staff after they've reviewed that I was healthy enough to keep getting chemo treatments each week but no proper pain management at ALL until my therapist my mom and even the hospital will be handing out the reprimands on a professional level because of the amount of direct harm patient shaming does!

I was so proud of her and I know how hard it is to be in ANY side of pain management that I just want it to be viewed on a FAIR scale and not let fear of our goose stepping government denying medical innovation be what drives the status quo of care and treatment of the sickest patients too easy to ignore and unable to fight for the best treatment instead of what insurance will cover!

They don't like the ghoulish light it casts on the industry? Perhaps we should haul the REAL monsters out in the light of COURT instead of congress where they sneer at any indignation of price rigging and industry monopolies that prevent new drugs from ever being discovered because profits from outdated suffering and pain levels are so GREAT until you are the one left begging for relief in your weakest moment!

I long for the day I can no longer need to use them but that decision is made by ME and the doctors that work FOR ME. Anyone else sticking their hand out demanding a piece for the privelage of being treated with dignity will wind up pulling back a nub! More than one doc on my team was shocked at how fast I got results with a fair argument but it's just crazy to ME that it had to be an issue that was any different than the REST of the poison I was paying to take and NOT die!

Turns out the state medical board agrees with me on that issue too so my therapist who happens to be an addiction specialist does lectures on proper pain management sensitivity training! It's better than anything to be paid to give the most valuable information in the most impactful way to the top doctors in charge of programs so he uses my case details to make it haunt them now!

How can I prevent an addiction before it starts and still relieve pain in a dignified way? I'm working on it but so far so good. It's just a hard lonely road to be right and nobody with the power to change that cares enough to listen!

They will, it's just hard to believe that when the government does everything possible to turn patients into criminals with chemicals that CANT be avoided entirely and still be considered humane care. I am not ashamed to stand up and tell everyone what I had to go to though just to make sure it will be better for the next patients to face it

Faithonfire

oh, stupid chemo brain is still getting me after a month free of it now grrr!

I just had my bilateral reconstruction done on the 9 th of January, and get my final reports this Thursday yay!

I had a skin saving nipple sparing operation after 16 rounds of chemo so they took 3 out of 5 sentynl lymph nodes and it was totally clear in all sections meaning we got full response from chemo on that side and margins were good enough to use my own skin and remove entire organ structures inside for pathology to map progression and all that.

My operation was about 8 hrs under total and expanders in over pec muscles under my own skin with 4 drains total and nipple tissue grafted just above c-section scars is taking well and will be put back in place with 2nd surgery perminant implants swapped out for these uncomfortable expanders!

I was taking morphine 15mg every 4 hrs for breakthrough pain and 5% lydocane patches to put under my boob on ribs before surgery and before that I was an aleve fan. Nanoproxin worked well for general pain like tooth pain but I had to give it up while I am on heavy stuff.

I'm only 42 but a true genetic mutant they can't explain and a complex medical case so we tend to stick to older drugs that tend to work better for me.

Fentynl is the latest and greatest used today but people like me stay awake and curse enough to make a sailor blush I was told but have no memory of my power port surgery!

We went with dilaudid instead and it works like a charm! Took less but needed it more often to stay ahead of post surgery pain on top of being bound with 4 tubes stitched in place! That was fine until the 3rd day when wrap slipped pinning my tubes yanking on stitches so I went in and had 2 drains out and upped my pain medication to 30fast morphine and 30 extended release to prevent pain spikes. I also use Valium as a muscle relaxer and it combines well with minimal side effects for me. I was only 120 lbs at surgery so I am doing my best to gain weight but it's tough to keep any weight on with all the stress wearing me down.

Marinol has been upped to 5 mg twice a day but their diluted versions not much help compared to the plant itself or edibles! It's just hard to talk about at all without fear of persecution for it!

I managed my ptsd before with mostly cognitive behavior therapy techniques that turned out to be critical life skills to keep me together through some of my worst days! I had my card application in my own state stall to this day despite my condition finally being added to approved diagnosis as I get treated for cancer! I just can't wait for permission when it's my right to NOT suffer until its settele

Meow13

I had one sided DIEP and they loaded me up on pain medication the 5 days I was in the hospital. I was able to get by with tylenol and advil at home but I felt burning sensation. Another DIEP friend was in terrible pain during her home recovery. I hate when nurses and doctors make comments about how your pain is. You know, you feel it.

Faithonfire

Hi meow13,

Yeah I got pretty luckyto not have any more problems after I hit full break down and got a cough I just couldn't shake but being a smoker for over 2 decades gave my doctor the false impression that a little tough love would get HER point across and continued my chemo on schedule every week as I got worse! It was not usual for me in any way despite my dirty habit!

My mom took her aside and scolded her for never treating HER that way about her pain when she was her patient! She was ready to cry when Mom came out of the room to hug me it was funny eventually!

It was the hospital and er staff that were so furious at how far I was being pushed on my pain that FINALLY got me setteled with pain management and realistic levels prescribed by hospital until palliative care took over on my 14th chemo treatment!

Turns out my oncologist was "uncomfortable" prescribing that level of pain relief (ANY!!) yet had no problems with pushing maximum doses of poison that by DEFINITION CAUSE extreme pain to patients taking it!!

My mom gave her a true perspective on my pain through her eyes taking care of me and seeing me suffer needlessly that way was shameful! My therapist and anyone treating me agreed and sent their opinion to the state medical board too!

I was never in my LIFE suicidal in ANY way before about my 11th chemo treatment. The pain was so bad and side effects so severe that I was ready to stop treatments completely and enjoy whatever time I had left which would have been about 2 years at that rate back home with my kids and husband!

My therapist was VERY concerned and got involved quickly after I told him what she said about being uncomfortable giving ANY prescription pain meds! I used aleve until it would not work at max dose allowed. She just got an instant audit of her drug history and a nice big kick in the pants for bullying patients in pain! If they also have ptsd and in a family medical crisis, a lecture instead of pain relief can be just as fatal as any overdose!

I come out swinging at anyone who dares deny my pain because I spent WAY too many years as a trusting patient in pain and shamed whenever I demanded relief