The Book Of Spoonie

Spoonie77

Hi all....

Many of you may know me from the multitude of posts I've written since being originally dxd with IDC/DCIS in 2018 which thankfully led me to this fabulous community. I can't tell you where I'd be if I hadn't stumbled on BCO during those early days after my very fist Mammogram at age 41, the one that ended with the words "You most likely have cancer. Just be prepared". So, yes, every day I'm thankful for this community.

That being said, since that summer in July, this journey in the cancer world has been exhausting and non-stop. I know ya'll can relate. I often say that if I hadn't led a Chronic Spoonie Life since I was a teenager, I would've crumbled into a million pieces. Instead, I was semi-prepared with a tool box of coping skills, mindfulness, meditation, and of course Netflix and Hulu! Fully used to surviving medical nightmares on my own. Familiar with how friends and family can't/don't understand or even all out disappear after a dx. Able to speak the language of doctors and knew the ins and outs of researching dxs, medications, and treatments like the back of my own hand.

Even with those years of "training", cancer still is the scariest thing I've ever faced. Even after treatment, it's the Boogeyman, the monster under my bed, the thing that hangs in the rearview mirror no matter where I go. Again, I'm sure ya'll can relate!

Cancer sucks. Full Stop. End of story.

Over the time since my first cancer dx I've been thinking about this thread off and on. Yesterday, after my second 6-month follow-up with my current MO, I've decided it's time to finally "make it so" (yes, I am a Trekkie). And so, a thread is born.

I'm sure it will evolve over time, as most threads do here at BCO. Even if some of it is me just journaling my "adventures" or whining a bit here and there, I hope it will be helpful for others, especially y'all that are Spoonies like me or who have multiple illnesses in addition to the gift that keeps giving, Le Cancer. We are all in this together, right?

For now, I'll come here to add the latest chapter to the Book Of Spoonie, but anyone else is welcome to chime in. This is especially true if you too feel or have felt lost and unheard in the Oncology/Medical World. If you too also battle other illnesses and feel that your MO "chalks" your concerns up to these prior conditions or to "paranoia". It seems that's what's been happening to me and frankly I'm at a loss of how to approach it as I now start looking for my 4th MO. (More about that search in the 3rd post as post 1 and 2 will be other info for anyone that is interested.)

Thanks in advance for reading and for the support. This community is the best! Wishing y'all light and healing!

Spoonie77

SHORT SHORT VERSION OF MY MEDICAL JOURNEY SINCE 07/2018:

2018

July Dx IDC

Aug 30 Lumpectomy L Breast, SLNB (3 nodes, all benign). Pathology revealed a dx of DCIS also.

Oct began Gated Respiration RADs. Developed; L Breast Lymphedema, Fibrosis, Costochondritis, and DEXA Scan revealed a healing L Broken Rib. Weekly Physical Therapy appts begin as well as 24/7 therapy at home.

Feb-May 2019 Tamoxifen 5 mg per MO. Couldn't tolerate 5mg Tamoxifen, ZERO QOL. Tamoxifen ended May.

2019

April: trouble swallowing, increasing fatigue, difficulty breathing, dizziness, hoarseness of voice, chronic dry barky cough. (MO said likely due to BC meds. No further follow-up or scans. Me unhappy.

April: 6 month 3D Mammogram/US - stable

July began Ovarian Suppression Injections. Allergic reaction. I am in the 1% that is deathly allergic to Zoladex (and its drug family). Due to severe neck swelling a Neck US ordered which revealed a Thyroid Nodule in the R lobe. Monitored.

July Developed L Nipple Lymphedema, in addition to the continuing L Breast LE. PT visits and Acupuncture continue.

July Chest X-Ray shows multiple shotty mediastinum lymph nodes, left lung opacities and scarring of Lingula reflecting "possible RADs changes".

Fall: Brain MRI ordered by Neurology. Increased number of brain lesions in Brainstem, Cerebellum, and White Matter. New dx of Multiple Sclerosis. MO and Neurologist agree further Anti-Hormonal Therapy for BC ill-advised due to studies connecting diminishing estrogen levels with progression of MS in women. Current BC treatment: Diet and Exercise while living with a 28-35% risk of BC recurrence.

September seen by ENT regarding continuing symptoms for past 5 months. "Nothing" seen on office exam. Monitor.

September: "kicked" from MO care due to my asking too many questions and "needing too much care due to other dxs". Anxiety much????? Ugggh. Nursing complaint filed with my states Board of Nursing.

October: 6 month Breast MRI - stable

November: progressing neck symptoms so FNA of Thyroid nodule ordered. Dxd with Papillary Thyroid Cancer in R Lobe. Surgery scheduled.

November PET Scan; Ground Glass Opacities seen in both lungs now, increased activity in Oropharynx, high activity in Thyroid, "possible arthritis" in both shoulders, and "possible Bursitis" in Left hip.

December Surgery: Full Thyroidectomy (5 Lymph Nodes removed, all benign). Pathology revealed cancer in BOTH lobes, not just in R side. Due to family history and BC history, I had insisted on the full removal, not half. If not I'd still have Thyroid Cancer growing in me. US and PET Scan missed it.

2020

January symptoms continue to progress: trouble swallowing, now choking on foods, throat pain with talking, occasional blood in throat, difficulty breathing, dizziness, hoarseness of voice, chronic dry barky cough. PCP rxs antibiotics in case Lung Issue. Follow-up as needed.

Late January: new L breast pain on and off near site of original LMPX.

February MS Consult: Ordered Lumbar Puncture, appt with Neuro-Opthamology, Blood work, repeat Brain MRI. Commented on "occluded airway". Follow-up with her in May. Referred back to ENT in the meantime.

March: my Six Month Follow-Up with MO: instead of waiting until due in April, she moved up 3D Mammo and ordered L Breast US due to breast symtxs/pain. Didn't blink about other increasing/continuing symptoms (see first post about that appt OMG). Following up on own with PCP and ENT for further work-up as I'm very concerned about possible Lung issues/cancer or Laryngeal/Pharanyx Cancer given my ongoing and worsening symptoms.

March 18: ...3D Mammo & L Breast US scheduled...

March 24: ...will interview my 4th MO.... Le Sigh.

Can you imagine what the LONG, DETAILED version is????? OMG. I am in SUCH deep deep appointment burnout. I cannot even begin to describe it. I wish I could just stay home and not go to another doctor, EVER! Sadly, the life of a Spoonie is just not that way.

Spoonie77

Some of my posts/back story can be found here, if anyone is interested:

Spoonie Age 41 Just Diagnosed, Radiation October 2018, November 2018 Starting Radiation, Any Early 40's Declining Tamoxifen?, In The Middle Of A Provider Fight: Tamoxifen & Pristiq/Effexor, Tamoxifen And Fatty Liver Disease, Starting/Declining Hormone Therapy Nov Dec Jan 2018, Allergic To Zoladex, What Am I Missing?, Antioxidants: Good or Bad?, Unexplained Weight Loss, Head and Neck MRI Results, Anyone Else With Thyroid Cancer Too?

If you don't know me, the shortest description possible is this:

I am a "Spoonie". (The Spoon Theory).

I have multiple illnesses, disorders, dxs galore, accompanied by a bazillion symptoms that limit my life on a daily basis, 24/7 with an unpredictability that is a rollercoaster of nightmarish proportions. In 2007, I became officially disabled and could no longer work in any capacity. I cannot recall what a "normal" "healthy" day is like, even pre-cancer.

It all began when I was 13.

My health came crashing down. No one, not even all the drs at Mayo Clinic in Rochester MN could figure out was wrong with me. My family and I were basically screaming "It's Lyme Disease!" but no one would listen. Back in the early 90's little was known about the truth behind Lyme and unfortunately most drs are still under educated on the topic. Even after 40 years of it being in existence, the tests they use today are not much different than the ones that missed my own case of Lyme. They are (ELISA test) famously inaccurate, missing about 35-50% of Lyme cases, depending on the studies you read.

Anyway, back to my story, in the 90's, no one would treat me. Sooooo I didn't receive treatment nor was correctly diagnosed with Lyme Disease for nearly 3 years. This did permanent damage to my immune system and my internal organs, as well as causing lesions in my brain. I received treatments and IV antibiotics, but the damage was done. (symptom list)

Unfortunately over the years, I have rarely felt well.

Thankfully, I have had a few remissions over the years, but they were all too short for my liking.

Mostly I was in and out of doctor's offices searching for answers. More dxs continued to expand my medical file; Raynaud's Syndrome, Sero-Negative RA, Hypothyroidism, Hashimoto's Disease, Fibromyalgia, Chronic Fatigue Syndrome, Undifferentiated Connective Tissue Disorder, Chronic Lyme Disease, Hypertension, Small Muscle Neuropathy, Migraines, Anxiety, Depression, PTSD, Chronic Inflammatory Response Syndrome, Bio-toxin Illness, and most recently Multiple Sclerosis, DCIS/Breast Cancer, Thyroid Cancer, and Breast Lymphedema/Fibrosis.

It all sounds made up, truly, who has this much bad luck? Trust me I wish it were all make-believe. I would give anything to have a healthier life and the regular run of the mill problems. Unfortunately, I continue to defy the odds and get every single "weird" "rare" thing around. My current PCP couldn't believe what I've been through lately, medically speaking, and says I truly defy the odds. This is old news to me. I'm just a "Spoonie Unicorn" patient trying to survive in a "Gray Squirrel" mindset medical world.

Spoonie77

This is how my last follow-up appt with my MO went.

Sure, it's not a transcription but rather a lowlight reel of the appt. Wish there were more highlights to share, other than at least she listened about the breast pain and moved up my 3D Mammo. Still, reading the convo back takes my breath away.

This whole situation sucks. I"m here again, looking for a new MO.

I'm scared. I feel lost. I'm beyond frustrated.

First of all, at our last appt I was on about 20 some supplements. She was appalled, mentioning that many of my chronic illness symptoms might be coming from having too many things in the mix. MO suggested getting off of all of them and seeing how I felt. I was opposed to this, knowing many provided relief, but told her I would think about it and see what I could do to lower the number and see how I felt.

I was very proud of myself. I gradually reduced the number over 6 months to only 3 supplements that I know I need due to chronic low potassium, magnesium, etc that my Spoonie Illnesses cause me.

I had written the list of my updated rxs and supplements on a sheet of paper for the appt. Last time I would've needed 2 pages. This time I had only my 15 rxs and 3 supplements. I was amazed.

My MO came in, after greeting me, looked at the paper and stated, "Oh wow, this is alot of things to be taking!".

I was dumbfounded. I didn't go in expecting a pat on the head. I went in knowing I had tried what she had suggested and wanted to talk about where I was at with it. That I wanted to add back in a few things, what her thoughts would be on these specifically, and that I can't get the list any shorter, since what remains are the mandatory things I need to function on a day-today basis.

Disappointed is how I felt.

Unfortunately things didn't get any better.

1) I have a chronic cough. I probably ended coughing about every 5 mins or cleared my throat a number of times because of the constriction I feel in my throat during our appt. It's just how chronic it has become. I mentioned it to her that it has been getting worse over the past 6 months and that the antibiotics my PCP gave me in January did not help.

2) I shared with her that my fatigue, which is normal on some level for me to have, has gotten exponentially worse over the past 6 months. To the point where it is difficult for me to walk my dog, to make meals, to clean the house, to do the basics without becoming exhausted. This is NOT my normal.

3) Later I explained to her that my ability to swallow is getting worse, to the point where I am choking on foods occasionally when eating. I'm also finding blood in my throat after conversations, since the pain in my throat gets worse with talking and is getting worse as the months go by as well. I explained about my prior visit to ENT and my visit with my MS Consult and how the results of their exam of my throat were very different in the span of a few months. My MS dr stated it was unlikely related to my MS and that I should follow-up with ENT as my airway was "very occluded". Five months prior my first appt with ENT had said "Everything is clear. I don't see any issues." Things have change to "occluded" now.

4) While she was listening to my lungs, I explained to her that I'd also felt more and more out of breath and dizzy with actiivty, where it previously hadn't caused this reaction. That actually when I lay down on my right side I find it hard to breathe and feel like I'm suffocating, so I have to sleep on my left side.

I wish she had at least demonstrated that she had empathy or concern, she didn't.

Instead after sharing these concerns with her she asked me, "What do you do?".

I explained I've been physically disabled since 2007 and cannot work. She said, "Why?".

I was confused, I'd explained many of my conditions and she'd seen my file at our last visit. I know drs have a ton of patients. It's hard to keep them all straight. I get it, so I told her again about my other dxs of MS, Fibro, CFS, Depression, Lyme, Migraines, chronic pain, fatigue, what my normal was like, and that the inability to predict when my symptoms will hit or flare or keep me in bed makes it impossible to work, sometimes it even keeps me from being able to attend my Breast Cancer Support group on a regular basis.

After that she looked at me, apparently truly NOT hearing or understanding or caring what I'd just told her, instead she said "Well, sometimes it helps to have a job.".

...deadpan....

I was SHOCKED and HURT.

Like seriously, did my Oncologist just tell me that if I had a job I wouldn't have these debilitating symptoms? That I wouldn't have trouble breathing or walking or what? That's what it sure sounded like.

Let me be clear, I am not super overweight. Yes, I have about 30 more pounds to lose. I've been working with the Dietitian MO suggested I see at our last appt. I've lost 10 pounds in the past 2 months making small changes slowly. Yet, my weight and my disability in fact seemed to be the reason she was now giving me for why my symptoms were of no note to her.

Maybe I'm way off base but it sure didn't feel like it.

In that moment, I felt like she had labeled me as "lazy" as "paranoid" as "drug seeking" as "dramatic" and therefore my concerns were not valid to her. I am disabled. I am a human being. I am scared. I shared my concerns with her, trusting her judgement and experience, instead of helping, she did a great deal of damage to me as a patient and to my faith in Oncologists.

She had nothing more to say on the topic of my issues with swallowing, the cough, or blood and throat pain, breathing, being dizzy with exertion, etc...even though I made it crystal clear that all of these symptoms are NOT my normal.

The only thing she did show concern over was when I mentioned I'd had new breast pain over the past 6 weeks or so. It had been on and off in the beginning and now was fairly constant. This was a different pain than I had from my Breast Lymphedema. She immediately said we'd push up my 3D Mammo and get an US of the area where I had the pain.

So, mention possible symptoms of Metastatic Cancer or Throat/Lung Cancer or Heart issues, and no concern.

Mention breast pain and immediate concern.

*shrug*

(ETA)

This morning I realized I'd forgotten to add one of the most disturbing and confusing parts of my MO appt to my post:

My prior 2 MOs had told me, specifically, directly that my chance of RR was 28-35% in 10 years.

When I saw my current MO the first time in Sept, she agreed with their numbers. Although she did say "I don't know that it would be that high, but at least between 25-30%.".

I left that appt in Sept feeling we were all on the same page.

During my appt this week with her she DRAMATICALLY changed my numbers...well actually she didn't give me numbers but instead said, "You had a low-ish Oncotype, you had a lower stage, you're young, you didn't have chemo. So your chances of it recurring are very low. It's really nothing to worry about. "

I was so shocked from the rest of the appt and from that statement that my brain stopped and instead of asking questions like what numbers? how did you arrive at this? etc I froze.

This put together with the rest of it just leaves me not trusting her and not feeling safe.

Has anyone else had a MO change their RR in such a way without explanation and dismiss your concerns? It seems so very unprofessional and scary to me.

Am I wrong coming away from that appt thinking my Onocologist is only concerned about my breast cancer and not the overall picture that I could be presenting? Is that all she should be concerned with? I thought the big picture is important for ALL cancer patients.

Maybe my idea of Oncologist is not accurate. Thoughts?

My history with this MO and my prior 2 leave me with the opinion that SOME Oncology doctors do not get the fear I face, the real symptoms I'm enduring, that the concern should be validated in some way and that it's SCARY to me. Instead, I come away feeling that they have lumped my NEW, CHANGING symptoms in with my "normal" chronic illness symptoms, or ignored them completely because they do not immediately point to BREAST CANCER, basically saying "nothing to worry about".

It's disturbing.

When I first met with my current MO and my prior ones their mantra was the same "Please tell us immediately if you experience increasing fatigue, exhaustion, trouble breathing, and x y z.". My response, "Ok, will do."

I figure this is pretty standard for MOs, am I wrong?

So, it's distressing to me as a patient when I do as they have asked and let my MO know that "Yes, unfortunately this has happened/changed. This has gotten worse. Blah blah blah." and they DO NOT BLINK. No empathy, no concern, no "Ok, I hear you. Here is why I'm not concerned..." or "Ok, a scan etc seems reasonable given x y z." or "Alright, let's rule out a few things and go from there." or "Let's keep an eye on this, if things don't improve after 3 weeks touch base with me." or "Hmmm, I'm glad you brought this up. I'm not sure I can help you with x y z but definitely follow-up with your PCP as soon as you can and let me know the findings."

Any of that ^^^^ would be acceptable and understandable to me, but to not act like you're not hearing me is RUDE and downright DISRESPECTFUL. Especially questioning my disability.

So my question is this, do Oncologists that see Breast Cancer patients only monitor about breast specific issues?

Not possible spread or new cancer symptoms?

Shouldn't they be vigilant or aware of or show concern for the symptoms they themselves ask you to be aware of that may signal cancer spread or a new cancer?

Am I completely off base here? Does anyone else feel this way? Have any of you experienced this? If so, how did you handle it? Do you look for better care or do you stay with that MO and try to fix it, etc?

I'm so confused and so frustrated and frankly, angry.

As a Spoonie that is DISABLED I feel very invalidated and disrespected.

As a Cancer Patient I feel ignored, in danger, and having been labeled "paranoid" aka "set on mute".

IMO it shouldn't be this way. I shouldn't be out looking for another MO. I should be settled in with a Oncologist that has my back, that sees me as a person, not just as a case or a problem. Uggggh. Instead I'm frustrated, angry, and feeling very lost and negative about Oncologists in general and need support.

I hope I'm in the minority, that I've had just had bad luck, and that the majority of patients have found a MO they could trust right out of the gate, so to speak. My reality is that in the past 20 months I've had 3 MO's come and go. I've been sorely disappointed and disrespected. My heart now has virtual Cancer Dr scars added onto the many other Spoonie scars previous drs have left over the years with their disrespect, ignorance, and just plain rude bedside manner.

Hopefully most haven't had to know the fear, the dejection, the hurt, and the lost feeling that comes with realizing that the MO you thought would be with you for the next years, by your side, helping you move on and continue to keep cancer at bay won't be. Realizing they are just not listening to you or taking you seriously is a gut punch that no one should have to deal with IMHO.

After all, we are cancer patients and we've been through the gauntlet. No matter the type of cancer, or the treatments, or medications, in the end we are all human beings deserving of care and support in the years after active treatment has finished. Our MO's should be able to provide this in a respectful, timely, accurate way.

Thankfully I know first hand that not all drs are created equal; just like everyone else, we are all human, we are all different, and all unique. I've had AMMMMMAZING Spoonie drs in the past and thankfully have found a wonderful PCP that has my back so I definitely know they exist (picture the M&M candies and Santa!).I just need to find the one for me. She's out there and in the meantime I'm just feeling whiny and frustrated with my bad luck.

I don't think what I'm looking for is asking for too much. I would like an Oncologist that sees me first as a person, not a "cookie-cutter case", not a "number", not a "problem", not as "lazy", and most definitely not as a "hypochondriac". I 100% WILL find a doctor that sees me as the human being I am, one deserving of compassion, empathy, understanding, respect, and the best medical care they can give me.

If you've been through this maze of drs as well, I hope the right one for you is just right around the corner. I'm trying to keep the faith, I hope you will too.

I go in for my 3D Mammo and US on 3/18. I'm worried. Won't lie.

I have calls in to my ENT and PCP to follow-up on my own about the other symptoms I'm used to it, this is what Spoonies are familiar with; having to battle alone when drs don't listen, to fight for continuing care. It's what I had to do with my Thyroid Cancer as well. BTDT.

I have an appt with a new MO on 3/24 to see if this Oncologist is a better fit. She has an interest in Pulmonary Cancers as well, so maybe she will have a different opinion on my scan history and progressing symptoms.

Until then, one foot in front of the other. Again, I'm used to it, but wow it would be lovely to have a MO that had my back.

Sending light and healing to all....you are not alone.

flashlight

Spoonie, Every time you change your MO are they from the same hospital? I go to my MO's NP mostly for a script for a Mammogram and to get refills for my Tamoxifen. She said she has a morning meeting with my MO and they go over each patient. Because you have more than one diagnosis I'm wondering if Mo meets with other MOs to discuss your case. I have been told I'm lucky I got the good kind of cancer, I didn't need to see a Gyn, don't worry about your liver function, it's the younger women that have to be more concerned...What I decided was my primary would be my person and so far that is working for me. Every time I am seen by someone else she receives and reviews the report and it goes in my portal for my review. My friend has thyroid cancer and she had to go to speech therapy for swallowing issues (dysphagia) after surgery. This can cause you to cough. When you are seen by so many different doctors they don't talk to each other and your MO might not have the time and/or desire to deal with it. This doesn't make it right, but it might be true. Maybe you should have a talk with your primary and see if she/he is willing to be your go to person and coordinate your care. Best thoughts....Terry

danabanana9

I am going to get banned from this for for writing this, and frankly i hope i do because this forum is an evil mess of suicide fuel no one with cancer should ever be allowed to come within ten miles of, but i have to say this to you before i go

you are a mentally ill schizotypal lunatic who should be immediately barred from any cancer support forum. i hope no woman on this boards read your paranoid incoherent neurasthenic ramblings and decided not to take their meds and died. if that happened to anyone here because of you i hope someone sues you

HikingLady

Spoonie, I'm glad you made this post thread to share your journey. You are amazing, keeping track of it all, and doing good self-advocacy for your care. I send you empathy and good vibes to keep your mental energy up to cope with what you didn't ask for, that's all on your plate. Warm wishes from me.

Spoonie77

Flashlight - Thanks for the kind post and sharing about your friends journey. I really appreciate it. It would be heaven if my drs talked to each other but in the 30 or so years I've been a Spoonie I've only run across one doctor, whom I miss very much, that did this on a regular basis. They exist, just rarer than gold it seems. Thankfully my PCP is really wonderful and I will just turn everything over to her. I guess Oncologists just don't have time or maybe even care if there are other symptoms going on that may relate to my history of cancers. It's disappointing but like you said, it may not be right but if that's the way things are, best to find a way around it asap. As for my cough/swallowing issues, I'd be a lot less freaked out about them if they had appeared after my Thyroid surgery, unfortunately they have been ongoing and gradually progressing since last Spring in 2019, surgery was just 3 months ago. I have a msg into my ENT so hopefully he will take the reins on this. Oh, about your question, I strictly have seen the MOs personally. I'm too "new" as a patient and they want me to see them directly. And yep 2 of the 3 MO's were in different systems as well. This one I will see on 3/24 is also in a new circle so maybe that will be helpful too.

HikingLady - You are always so sweet and your posts feel like warm hugs. Thank you for taking the time to cheer me on. I'll take all the support I can get. Sending you much love and healing your way as well.

Spoonie77

This morning I realized I'd forgotten to add one of the most disturbing and confusing parts of my MO appt to my post earlier....

My prior 2 MOs had told me, specifically, directly that my chance of RR was 28-35% in 10 years.

When I saw my current MO the first time in Sept, she agreed with their numbers. Although she did say "I don't know that it would be that high, but at least between 25-30%.".

I left that appt in Sept feeling we were all on the same page.

During my appt this week with her she DRAMATICALLY changed my numbers...well actually she didn't give me numbers but instead said, "You had a low-ish Oncotype, you had a lower stage, you're young, you didn't have chemo. So your chances of it recurring are very low. It's really nothing to worry about. "

I was so shocked from the rest of the appt and from that statement that my brain stopped and instead of asking questions like what numbers? how did you arrive at this? etc I froze.

This put together with the rest of it just leaves me not trusting her and not feeling safe. I have a portal msg in to her to see how she arrived at this new thinking.

Has anyone else had a MO change their RR in such a way without explanation and dismiss your concerns?

It seems so very unprofessional and scary to me.

edj3

Spoonie, I have no words of wisdom for you, only sorrow over the rough road you've been on. Sincerely hoping that this new MO is the one for you.

GreenHarbor

Spoonie, I’ve added this to my favorites. I think about you ALL THE TIME. I so wish I lived in your town so I could bring you soup and take your sweet dog for walkies. You are such a strong woman to have made it through so much. Sending much love and many spoons!

HikingLady

Spoonie77 If your new MO's assessment of your risks of recurrence is better than the one you heard before, yes, if I were you I'd want to understand why it's newly better news than you'd been told before. Good news is good news, though! Yay! My MO always uses the NCCN guidelines, but those change as research informs the NCCN data, and my own risk of recurrence changes with time, as does everyone's. The longer you are NED the better your statistics are, is more or less what my MO said.

I also would make you soup if you lived nearby! Life is often not fair, and your bad luck of so many health challenges is a perfect example. You seem made of strong stuff, and I also send you spoons and support, as always.

Spoonie77

Thank you ladies. I too wished we all lived nearby to lend real life support. I'm so thankful I found BCO and you, my wonderful friends. I know we do not post all that much these days, which is a good thing I think for it means maybe things are "ok" as they can be for most, but know you are all in my thoughts often!

Green Harbor you make a good point! I would be estatic for good news and if she has scientific reasonings behind this "oh you have nothing to worry about" comment that came without any actual numbers, I will celebrate. *fingers crossed* For now I'm simply confused and doubtful.

MO is out of the office until the 11th, so I wait.

In the meantime, her RN got back to me and confirmed that NO my dr will NOT be doing my tumor marker testing. I find this unacceptable due to the fact both of my prior MOs said these tests SHOULD BE part of my follow-up for at least 5 years due to my young age. Even if they aren't 100% they said it should be monitored "in case".

So that makes it offical, I will be finding a new MO, stat. Frustrating.

On top of that, a CO-Vid19 case was confirmed 6 miles from my home. Not panicking but being vigilant. With all of my med hx I am in the "underlying conditions" risk category. Sure hoping that being cautious will keep the virus away from me. I don't need anything else.

Oh, and turns out, yesterday at my counseling appt, I found out I will have to switch Psychiatrist again. My current one is leaving next month. I just saw this new one for the first time last month. This will be the 3rd one I've been transferred to in 18 months. Turn over in the mental health field is awful apparently in this area.

I did talk with my RO's nurse yesterday, inquiring if she could look over my prior Chest CT and PET Scan and give her opinon on the lung ground glass opacities and scarring seen in both my lungs. These were not there prior to RADs and only a bit in Left lung this past summer. In PET Scan, seen in both lungs. RO said what is seen in imaging does NOT fall into any type of RADs related scarring or issues. Which is what current MO told me it was. So I am anxious to see new MO who has a specialization in Pulmunary cancers for that 2nd opinion.

Good news is that I heard from ENT yesterday and he ordered the Swallow Study XR series to be done to asses my throat/swallowing issues.

Spoonie77

Help....

The disaster with my current MO continues.

I sent a portal msg this weekend asking after info about why/how my recurrence rate had somehow changed from her assessment of 25-30% from our prior visit in Sept 2019, to now as MO stated "nothing to worry about". (read above posts for the horror that appt was IMO) FWIW, when is CANCER HX ever NOTHING to worry about? UGGGh.

MO was out of office until today. Her nurse replied the following:

I cannot get in for an appt to discuss this until Aug. I don't get it. What am I supposed to do between then and now?

I called her nurse to see if I could get in sooner or if MO could portal msg me. She said she would ask but it is doubtful since her response was "It's too complicated to address via msg.". Honestly I call BS on MO. Prior drs have explained MUCH more intense info dense topics with me, if they choose. I feel like she is CHOOSING and it hurts my care as a patient. IDK. Maybe off base but sure doesn't feel like it.

I am falling apart. I think drs don't want to deal with me because I have too many health issues and I ask questions.

She has refused to order my CA 27-29 and my CEA markers, stating that "She does not order these for breast cancer patients."

Anyone else have these issues with the MOs? Or am I the only one??????

Losing my mind and for today I want to give up and quit fighting and just let the drs pass me off and let whatever happens, happen.

I fucking hate this. Sorry. I just continue to feel so belittle for having a disability and having cancer, drs just don't understand.

I'm heartbroken today.

flashlight

Spoonie77, That is unacceptable. Possibly she made a mistake on your results. You have an appointment to see a new MO in a couple of weeks. What I would do for this appointment is list your top 3 questions and hand the MO this list. Let this doctor know you need the answer to these questions in order to move forward. Keep these questions as concise and to the point as possible. Hopefully this doctor will be the one! Good luck with your swallowing study.

Spoonie77

Thx Flashlight. Definitely a great idea. Will be writing up those important questions this week.

For now I'm most concerned with my 3D Mammo & Breast US results happening early tomorrow afternoon. This wasn't scheduled until late April. Pain & lumps moved it up.

I'm so anxious.....want good news but have had so little of it (medically wise) in past 2 years that's its hard to expect anything different.

Hope i am pleasantly surprised. Keep me in your thoughts my friends. And pls stay safe out there! Scary times with this Covid-19.

edj3

Will definitely be lifting you up, my friend.

Salamandra

Thinking of you Spoonie!

HeartShapedBox

Oh Spoonie, what you've been through! That MO does not sound like someone I would want to entrust with my health care. I can see a breast surgeon being focused on "only local tumors", but an MO? Are they not the ones tasked with monitoring ALL aspects of our cancer, risk assessment, scans, mets, referrals for other treatments?? How deeply unprofessional to start off on a disrespectful note and then NOT quickly address this clear case of what is either a huge fuckup on her part or gross miscommunication. I'm sure searching out a new MO is the last thing you have energy to invest in, but man, I personally would have a hard time trusting her moving forward. You deserve a better care team than that.

Thank you for starting this thread- you were SO generous and helpful with your input on my March Radiation thread, that I went back and looked at your 2018 radiation group thread (what a wonderful supportive bunch y'all were!), and then became interested and concerned about your personal story. Lyme disease will REALLY mess you up, damn.

PebblesV

Spoonie - I added this to ma favorites as well. I know I’ve been in and out of the threads - please know that if you’re having a tough day you can always message me. It pops up in my email and then I know to go in and check!

I think your MO was being dismissive and bc focused only on changing the risk assessment but I agree it’s a positive. Really all the risk assessments are just best guesses anyways. All we can do is what we can control. Glad you got a new MO. If you were in CA I’d refer you to my MO! He’s been great and with me since the start!

STAY SAFE with covid-19 out there. My husband and I are hunkering down - LA county just announced a Safer at Home ordinance which I’m actually happy about, means I can work from home for the next month! Will be weird with most non-essential businesses closed but maybe this is a good time to stay cation, catch up on Netflix and On Demand, and do some spring cleaning.

Saved this pic for your thread - Finley has a horseshoe on his bottom and he is sending you some lucky butt.

Keep us posted on your 3D mammo and US results.

edj3

Checking in to see if you are still on the boards, Spoonie. If you don't have energy to reply, no worries. But I've been thinking of you.

Spoonie77

Hi my friends....it's been a long time.

Mentally I needed a break from all things Cancer so left the boards for a bit. And then of course, with my luck, or LACK of it, you know what happened.

I got sick. It was Covid. It was awful. I couldn't breathe but my oxygen levels weren't low enough to warrant O2 or a hospital stay. The urgent Chest CT they ordered came back stable as well, no evidence of Covid at that time, so was sent home the first 2 ER visits as "likely Covid" due to MN test shortages and testing criteria. Told to quarantine as if I had it. So, I spent the next 6 weeks in and out of the ERs. Tracking my 02 with my meter and praying I'd wake up when I fell asleep. Finally, thanks to my bear of a mom, she was able to wrangle me an appt with drive-up testing when they started here in MN at the end of April. Was told it'd take 10 days to get results, thankfully only took 4. It was Positive.

All told, this started at the end of March and didn't let up until last week, freaking May!

Le Sigh.

Now, today, I found out my brother-in-law who lives in a long term facility due to his MS, was dxd with it as well. He's on oxygen and because of other complications a Vent is not an option for him. It would destroy what little function of his lungs he has. The doctors have nothing they can do for him but keep him comfortable. They said the next 3 days would decide if his body can form a response. We are devastated.

This virus is horrible. It makes me sick to see so many out "waving their rights" and possibly spreading this further to others. Anyway, I digress.

In terms of cancer, I'm still NED. My MS is stable. My Breast LE is crapola, I want to chop off my L boob almost every day due to the pain, but I guess all things considered, it's just a "lump in my cereal, not in my breast".

Hope you are well Edj3 and your family too. Stay safe, you and everyone here...ya'll are part of my extended family.

edj3

I am glad to hear from you--I sort of knew that you had COVID (ESP? I don't know but I did have a pretty good sense that you got it)

So very glad your cancer is NED at the moment. I hope you continue that way indefinitely, forever, until the end of your normal days

Salamandra

Spoonie, so great to hear from you! I'm so sorry you had covid19, and so glad you are recovering.

HikingLady

Spoonie77 It's really nice to hear an update from you. I am SO SORRY you got COVID-19, and so very glad that you are recovering. So sorry about your brother's very worrisome situation. Keep us posted, as we're all here to support you, for sure. Good news about NED on bc and also MS staying stable.

And, you made it through that horrible virus! So very glad that you're recovering, but how horrible it sounds. Maybe you have some immunity as a result? That part is not quite quantified yet, but there's an "expectation" that we have "some immunity" for awhile after COVID-19, is what my doctors are telling me. It will be wonderful when we have an accurate immunity/serology test rolled out, but so far, they're not quite reliable or standardized.

This book (linked below) helped me a lot with (temporary, not permanent) LE . It was written by my friend, Gwen. She's a P.T., recently retired after decades of specializing in treatment of this exact specialty (lymphedema in breast cancer patients) in her practice. I hope you have guidance and an LE specialist who's treating you and advising? Meaning, how to do wraps, how to do MLD, how to protect from worsening of the condition, etc. You might get some support from this book or a similar resource:

https://www.amazon.com/Lymphedema-Breast-Patients-Prevention-Healing/dp/089793458X

PebblesV

Spoonie wow, it seems everything hits you but there is a blessing in your case that you came out of it OK. You are a survivor and at least you know your body can fight it off. Sorry for a late response but like you I’ve been off the boards too. Mostly because working from home just means more time working and I’m still struggling with finding balance. Miss our community and trying to come back a bit, sending hugs and hoping you and others are OK since the last update!

And because it’s tradition here’s now 11 month old Finley bothering his big brother Tucker (who is 18 years old now!) with a look as if to say he isn’t doing anything (like getting into Tucker’s face LOL)

edj3

Chiming in to say I think of you from time to time, hope you are living your best life and that you're in a good spot.