BC with Pre-existing Major Mental Illness - How Many?

1Athena1

Hello, everyone,

I was diagnosed with breast cancer in 2009. Because I have bipolar disorder type I (the "classic" manic depressive illness) the treatment has been hell on wheels.

I look forward to the day when physicians will learn to treat the whole patient and not just the cancer. Many of us with major mental illnesses (schizophrenia, bipolar disorder, a serious personality disorder, major recurring depression etc...) have a different body and different concerns. Yet we get the standard tx thrown at us by oncologists who fill us with fear of what could happen (real and imagined bogeymen) if we don't follow their instructions to the letter. Our psychiatrists are often clueless about our cancer and thus it is left up to us patients to make decisions on our own, and when we are at our most vulnerable. It feel desolate to be in unchartered territory. We are completely alone in this. Does that sound familiar to anyone?

For those of you with major mental illness, I wanted to ask some questions:

1) Was your cancer treatment any different because of your illness - any medications added or subtracted, for example?

2) Do you have any regrets about cancer treatment?

3) How has your mental illness withstood the cancer - have the symptoms gotten better, worse or stayed the same?

4) Do you think your loved ones and doctors understood the medical decisions you had to make?

5) Does any of you feel angry about this?

6) What do you do or think of to give yourselves hope that things will change?

7) Where do you see yourselves five years from now?

I would love to hear from anyone who can share experiences.

I apologize for how negative this post sounds (I might edit it if I feel less negative than right now - lol). I really do hope I get to the point where I am thankful to be alive. I am not there yet.

Thank you!

(Edited to "soften" - edited again to soften further!)

pallir

Dear Athena,

Thanks for the PM.  I have to counsel at an outreach in 2 hrs., so I can't say much.  But one of the things that I noticed after my BMX on 7/31/12 was that some of the medications adversely affected me.  The antibiotics caused me to have mouth ulcers, and the pain meds caused me to hallucinate which meant that my MPD (Multiple Personality Disorder or Dissociative Identity Disorder) was negatively affected.

Any substance that goes into our bodies that can affect our brain and/or hormonal chemistry can potentially have a devastating effect on our mental and emotional well being.  Everyone's chemistry is off with cancer, the stress of decision making and surgeries to our bodies, etc. have additional disrupting effects.   Not factoring in all of these chemical interactions is bad enough for those without pre-existing chemical imbalances.  To not factor it into the treatment of those with pre-existing conditions is negligence on an unforgivable scale, in my opinion.

Due to "treatment" by my ps (mentioned in another thread), I had extreme suicidal ideation in the weeks following his surgical procedure. This was not brought on by the dx of bc, but by how I, as an individual, was "managed" by the physicians and herded through their system; at a major cancer facility, too.

I agree with you that there is a dearth of physicians willing to look at the whole process differently, and I, too, am tired of being treated "by the book". I am also tired of being labeled a hypochondriac when I don't fit the "norm"; only to find out later through my own research and determination that I DO have narcolepsy, and I DO have MPD, etc.  SOMEONE is in the 2% on either end of the curve, and everyone deserves to be listened to and treated with respect.  At least that is what I have discovered by reading the Patient's Bill of Rights and the information provided by the AMA on standards of ethical treatment of patients by physicians. 

So much for a short note, ha.  Gotta go. Talk more another time.

Thanks so much Athena-

Angie  

bluedahlia

I don't have a mental illness, but my brain does not function normally as the cells that produce dopamine are gone.  I have Parkinson's Disease and had to forego chemo (I was borderline to get it) because it would intensify my symptoms.  I did have radiation and have been on tamoxifen and now Arimidex.

I have good days and bad days....which I'm sure the hormone therapy contributes to.

1Athena1

Hello Angie!

Glad you were able to "stop by" and good luck in your counseling appointment!

I am sorry you had such a hard time with your surgeries. And, yes, I agree with you that the 2 percent outliers never get counted in this equation. If often seems that doctors act as though statistics tell the whole story for everyone, and that somehow everyone will fall in the majority.

There are many studies tying mental illnesses (bipolar) to disruptions in the hypothalamic-pituitary-adrenal gland "axis" which means that any medication that affects the hormonal system can be devastating for us.

I am so glad I never allowed chemo into my system, and especially into my brain, where it could have really wreaked havoc.

Like you, the cancer diagnosis itself, or the news of it, didn't affect me. It was the so-called routine treatment.

"See" you later!

1Athena1

((((Blue)))) That is tough to be without dopamine - Jesus - I bet you have had your share of depressions! Do you take anything for it? How have the Tamoxifen and Arimidex affected you?

bluedahlia

I take 50 mg pristiq which is a finer version of effexor.  I have no estrogen in my body (had an ooph) so get lots of joint pain.  Some days I feel like I'm living in a box!

sheila888

Dear Athena...i just wrote a long post and lost it

I suffer from chronic depression and on meds many years now....

I have my good and bad days.....

Anxiety and panic also is kinda controlled by Klonopine......

When I was DX...my MH provider said to me 'You know depression and cancer don't work well together"......those words hit me like i was a different person...almost my brain shifted.....

No more depression...i was joking around that BC cured my depression but after I was done with 2 lumpectomies.....3 different chemos +Herceptin + radiation.........I actually lost it.....it took me quite a while to get where I was before DX

I will answer your questions as clearly as possible

1) NO

2) No

3) Better

4) Didn't have to make any decisions.....I continue taking my meds

5) Not angry but definitely uneasy..every little symptoms I develop (not BC related) I think cancer is coming back...i'm more scared than angry

6) I don't think things will change...just becomes part of you....

7)  I don't think that far.....

((((HUGS))))♥

Sheila♥

sheila888

I was also on Femara for 5 years from 2006-2011

1Athena1

Sheila, welcome!

And thanks for answering the questions. I am glad that the bc didn't roughen your ride with depression o ver the long run. That's amazing that you were able to comp;lete five years on Femara. I was only able to tolerate 18 months on Tamoxifen, and those were on and off.

There is an epidemiological link between depression and bc - I have read of one between bipolar and bc too. In fact, people with serious mental illness have shorter lifespans and more comorbidities, so from that point of view I suppose we all should not be surprised at bc.

The chemos and Herceptin must have been tough on you. How did you cope?

1Athena1

I know it is hard for many of us to talk about treatment while living with mental illness. Most people posting on BCO say it was "doable" or the problems they report are ones that their onc generally forsaw.

So here goes my wierdo, different tale - hopefully folks will feel better about sharing theirs. I am reproducing parts of a post I made on a thread about not smoking, so the emphasis is on that for that reason:

April 27th, 2009 was the last day I was an active smoker. I did it through thick and thin.

If I can do it, anyone can.

......

I can't believe I am revealing this on an OP, but I do hope it will help and inspire others who think they can't quit: I have Bipolar I Disorder - not the type that most people get (depressions with tiny highs that are being overdiagnosed as Bipolar), but the classic, textbook type with the severe symptoms that would have had me diagnosed in the 70s. It is inherited, neurobiological, lifelong, and not curable. Only treatable, and with inter-episodic remission.

I was diagnosed with breast cancer in late March of 2009. I immediately made the decision, out of pure fear, to stop smoking - something I usually feared more. On April 27th at 6 am I started the count. I used nicotine patches to begin with. However, as the days went by and my cravings did not cease, I started using more and more patches, until it became evident that I was making things worse. So I did what most veterans suggest, given the abysmal quit record of patches, chantix, etc: I went "cold turkey." By mid-May, I was starting to get manic from the stress of nicotine withdrawal, etc... On May 24th, 911 was called and I was hospitalized in a psych ward for mania brought on by not smoking. I had quit cold turkey, because the most addictive part of smoking is nicotine - not the carcinogens. Also, my PS had said I could not smoke before or after my reconstruction and I didn't want to ruin my body simply because of nicotine. It's the nicotine that can slow or prevent proper healing after surgery.

At the psych. ward, even the doctors were worried for me. The head of the psychiatry department offered to give me nicotine patches to ease the mania. I remeber saying "No, I've come this far, I'll keep going."

I was in the P-Hosp for about a week and emerged, still having a long way to go to come down from my immense and destructive high. But I did come down from it, and without cigarettes.

This is one of the worst things that can happen to you - literally going crazy over something. I was hospitalized because I was believed to be a danger to myself. And I came out of it. I stayed quit, the days passed, nicotine and its metabolites slowly eased out of my system, and every week the cravings diminished. No matter how awful the withdrawal felt, I knew it was less bad than the week before.

Some people with cancer endure chemotherapy. Others fear the surgery and go through much pain and hardship. Others are maimed and weakened by radiation or hormone therapy. We as cancer patients all have our crosses to bear. We are faced with monumental decisions, a Herculean fight to endure the unendurable, and all of our vulnerabilities come to the fore, as we get closer and closer to our limit....

But so do our strengths. I am proud that I walked right through that forest of smoking-withdrawal induced mania and eventually came to a clearing. I attribute my BC survival up until this day to the surgery and my quit. Those were, IMO, my two lifesavers. What kept me going is what keeps all the sisters on this board going who endure horrendous SEs from treatment. The conviction that you are doing the right thing, and the fear that NOT doing it is worse. I told myself "this is MY cancer treatment - we know cancer treatment is hard."

I sailed through BMX and reconstruction and refused chemo and rads.

Down the road, after I had conquered the worst of my smoking addiction demon, I was to endure a battle with hormonal therapy that very nearly cost me my life. But it was this event, started on April 27th, 2009, that gave me the strength to pull through that as well.

sheila888

AC chemo DD 4 cycles was terrible...lost 7 pounds in 2 weeks because of mouth sores couldn't eat..and my tummy was very sick all the time

Taxol DD 4 cycles didn't have much SE

Herceptin....I didn't experience any SE....except my nails

Radiation the only SE was that my breast was really burned and to this day it's purplish but doesn't hurt......

I didn't have SE from Femara (Some people might think it's not normal)   

Just few cold flushes here and there the first 6 months.........

I wasn't surprised because I had 2  biopsies before which they were B9...but Had this feeling about my right breast

♥

kyliet

Hi Athena, thanks for starting this thread. I have bipolar and have tried to reach out to others on this thread with the same but no luck. It is great to see a response. 

I hover somewhere in the middle with bipolar, I have been hospitalised several times and yep this cancer combined with bip sucks. My Mum had breast cancer and doesn't seem to understand that it isn't the only problem I am coping with. 

1: My cancer treatment was no different but my psych treatment was. I had to forego some meds and have increased others. The treatment has definitely affected how my bip meds work.

2. My only regrets about cancer treatment is that I had to have it.

3. Symptoms of bip worse. Less stable and bigger shifts. 

4. No

5. Yes

6. Think of my young children for hope.

7. 5 years - not a statistic.

My biggest problem with having cancer and bipolar is that on one hand I have been fighting for my life but when the bipolar crash happens living is a nightmare. This is what I don't think others understand. xx

1Athena1

Hello kyliet, nice to meet a fellow bp-er! I am so glad you are here. A forum for comorbidities is long overdue, I agree.

Wow, you went through chemo and rads. That takes a lot of courage with bp, so congrats. Are you Bipolar I or Bipolar II? I know in Europe (according to their classification system) they don't have that distinction - not sure if it is the case in your neck of the woods. Bipolar I is the more "classic" (severe) type whereas Bipolar II will have lower levels of mania (hypomania) and more depressions, generally.

My symptoms of bp also got worse with treatment. I think the Tamoxifen made me unstable and moody. I also speculate that the Tamoxifen caused me to go into early perimenopause, which, for the last five months, has led to depressions that are severe and wil not respond to psych meds - that is why I had to take estrogen.

May I ask what bp meds you are on?

I am currently on Lithium and, when needed, take Lexapro. I could not take those meds along with Tamxifen becuse I became too fatigued.

I really identify with your last paragraph. I find that, between bc and bipolar, the bipolar is by far the hardest to live with. That sucks that your mother, who had bc, doesn't understand the extra stress you have to cope with.

kyliet

Hi Athena, I seem to hover between 1 and 2.  I had been relatively stable for a couple of years - as I am sure you know 'stable' to a b-pr is fairly subjective. 

I am having a 'crash & burn' couple of days so it was amazing to find your post. 

Lithium really affected my hormones.  My breasts were swollen and sore, my periods went haywire and eventually it started to become toxic to me. I sometimes wonder if the lithium and breast cancer interacted because of these hormonal side-effects.  I will PM you my meds. 

My onc said tamoxifen side effects take about 2-3 months to emerge fully. That is where I am at time wise and my Bip is all over the place. Makes me think?????

1Athena1

((((kyliet))))) I am sorry about your crash and burn. I definitely know how that feels. It comes when you least expect it, doesn't it?

Of all the meds I have taken (and I have taken many) Tamoxifen is the only one I have literally flushed down the toilet. I just wonder how Tamox can be so good for us when it makes us so unhappy. I know that sounds simplistic, but what is the point of suffering so much in order to survive that you don't even want to live.

I read that between 50-60 percent of bc patients do not complete their five years of Tamox. That is why I didn't feel so bad going off it. I figured I would rather enjoy life than wish I were dead.

I used to know the "stable" boy for bipolar, but no more - not since the cancer. I have had dangerous highs and lows. I have a superb psychiatrist, but I don't seem to respond to meds as well as I used to.

It doesn't help that, during a manic episode, I swallowed an entire bottle of Tylenol. Tylenol can damage the liver. Since then I think I haven't been as good at metabolizing some meds. Except Lithium. 

kyliet

Okay here goes my biggest gripe. I don't know how you all feel about this but as someone with a mental illness it really, really pi**es me off. 

I know people mean well but sometimes I wish they would just keep their mouths shut. 

When people tell me that if I have a positive attitude my cancer will be cured. Sorry but does that mean because I have an illness that makes my attitude negative that I caused my own cancer?? 

1Athena1

Oh, don't get me started on that Kyliet. It's bad enough that people blame your bp on you - now they are saying you gave yourself cancer???? Yeah, a "positive attitude" would avert depression - yeah, right. One of my sisters has tried to suggest that to me.

Some people have a charmed life and don't know what they are talking about.

sheila888

when I used to get my depression episodes...one of my friend would suggest for me to take a walk around the block

One day I said that's an insult to me...if I had Diabeties would you still ask me to take a walk....

Now my friends know and they respect and understand that Depression is an illness not just a saying...

Unfortunately most people used the word even if it's raining outside   OOOH it's so depressing

And having DX with BC...as long as you are in treatment we are understood...once all the treatments are over...you can no longer talk about it because some family members beleive everything is behind you now

Hugs to all my sisters♥

1Athena1

Wow, Sheila, that really rings a bell with me. I remember when I had just emerged from a hospitalization that one of my sisters suggested I go travelling with her, just to get some fresh air. I was ill! I couldn't move.

And, yes, people use words that denote mental illness without really realizing what they are saying. Many people use the descriptor "bipolar" to describe really nasty people or "schizophrenic" to describe undecided ones. Insulting, if only they knew. This is not a character issue, and it certainly isn't one I would be caught dead choosing. Many mental illnesses are inherited and they are disorders that have specific profiles in neuroimaging studies (although much remains to be discovered).

I got more sympathy from the bc than from the bipolar - but I have suffered much more, and been closer to death, because of the bipolar. My sense of humor has helped me to survive (as has mania, at times).

pallir

Hi again,

I am re-posting what I wrote the other night before the MODs formed this venue.  I hope no one minds, but it costs me so much to share it that I wanted it to at least be in the correct place, should someone be able to benefit from it.

Thanks,

Angie

Posted Nov. 12, 2012 at 7:22pm

I have been a member since 9/23/12. In desperation I had been searching the internet to find someone, ANYONE, like me. A person with cancer and a Dissociative Identity Disorder (DID), sometimes called Multiple Personality Disorder (MPD). What I DID find through searching, was humorous references to having a split personality, etc. Don't get me wrong, my loved ones and I laugh about it, too - how else does one cope? Before I was diagnosed in 1996, my three children loved it when their dad went out of town because "Kentucky Fired Chicken Mom" would show up: she was the one that was younger than my kids and was always willing to let my 16 yr. old buy fast food for us (KFC Mom didn't cook!).

Having a forum such as Athena mentions would have helped me so much; if only to get my thoughts out. If there had been a forum that was more easily accessible, perhaps others with cancer and MPD would have posted and given me hope.

The AMA states that our physician must fully dislose all of the options available to us regarding our treatment, regardless of whether they perform the option or not. Seven out of ten women are NOT being given this info about their breast reconstruction. Physicians are further required to help the patient locate and establish with whatever physician they want, even if it is at a different facility. To do otherwise, constitutes abuse of power and trust.

My PS did NOT fuly disclose or fully inform the pros and cons of the options he DID present. In addition, I was lied to about who would do my surgery, about the option for skin/nipple sparing, and then about what was happening to me physically being "normal" for this type of procedure.

I only mention this to explain that this abuse triggered my MPD, REALLY bad. I trusted my PS to help me; instead, for reasons of his own, he did what, in his mind, was best for him with, what would seem, no considerataion for pre-existing physical conditions that would indicate I was not a candidate for his procedure. I didn't expect anyone to factor in MPD. It had been manageable for many years and was not a problem for me.

However, my MPD originated from childhood abuse - emotional, physical and sexual. Children are supposed to be able to trust those placed in a position to provide care and protection from harm. If those very people don't provide that care and protection but instead put their own wants before that of the child, regardless of the immediate and long term damage to the child, THAT is abuse. The child's life, to some degree, is sacrificed to the abuser's wants. The message: "You don't matter - I matter. Your hopes and dreams, your life - they don't count. No one is stopping me, because no one cares about you and you have no value. And if you say anything, no one will believe you because I am an adult and respected and I will call you a liar. And they will believe ME."

What Dr. S did to me felt like the abuse I had received in the past; the same message, the same betrayal of trust and the same sense of powerlessness. This along with the constant pain the expanders were causing due to my fibromyalgia, triggered my MPD and out came the little one who carries all of the abuse of my life. She is very little, five or six - maybe younger. She is shame based; afraid and mistrustful of everyone. Her whole existence is fear and pain. She thinks if we can gather enough information we can somehow protect ourselves from abuse - if we can see it coming, then we should be able to protect ourselves . . . can't we? But we couldn't when we were little . . . She can't imagine what we did so wrong that would make Dr. S do this to us. It hurts to breathe. He put the ports right on our chest bone and we can't even get a hug because it hurts. He is not nice and he lies and we don't like him. there.

Sorry, now I am little. But we are working togethr better now. Everyone was in a safe place with Jesus but then that doctor made us afraid again and we can't sleep with Pete because we can't lay down in the bed because it hurts and we really really miss sleeping next to Pete. I want to make sure that doctor can't hurt other women and I want to tell other women who have many parts like me that it is ok and that it is not their fault and that they are precious and that god loves them like he loves me. I am sad that Dr. S didn't tell us the truth. We could have been ok by now but we have found a good dr. in miami to start fixing the side that hurts the most on this saturday. he is nice and went to a place in the jungle and operated on many children who had hurt mouths and things. i am sorry about so many people hurting and that some doctors are not nice and doing the right thing. it makes me sad. but i do know that god loves me even though some parts are scared of him because he let his son be killed but we know that big angie isn't scared but she isn't out all the time. scared angie isn't out and that is good. it is awful hard to keep up with things. i like y'all. yu are all very nice to each other and that makes me happy.

i am glad to get to write to y'all but i am afarid to read what someone might say. i'll let pete read it first cause big angie isnt here right now

your friend angie

1Athena1

Hey angie,

I am really sorry to hear about all the trauma you re-lived as a result of a bad reconstruction experience. I have read some posts by sisters on BCO who also suffered abuse as children and/or have a history of PTSD and who found that the experience of reconstruction or negative experiences with surgeons brought back those demons. You are in a safe place here, though. We all have medical conditions, so we don't judge, and your disorder is NOT your fault!

Also, we know that no two people experience this BC thing equally. To top it off, you have fibromyalgia, which can't have made things easier.

I hope this is helping you to get things off your chest and you should feel poud that you have gotten this far. I am always amazed at just how compartmentalized medicine is. Your disorder is less well know, but even mine, bipolar, is frequently a mystery to non specialists. They haven't even heard of some of the meds half of the time.

I am glad that you found a doctor in Miami who can help you with the side that hurts, and I hope your experience is more positive. The dissociation is your mind's way of protecting you from trauma, so I hope you never have to go through it again.

Let us know how the surgery in Miami goes.

BTW, do you take any psych meds - what is your treatment for the dissociative symptoms?

kyliet

Gentle hugs to you Angie xx

kyliet

Well here is a classic example of how BC treatment ties in with mental illness. 

Just before I found my BC my periods started going haywire and I was getting hormone migraines which I hadn't had in years. This in turn caused by bipolar to escalate. Treatment had caused chemopause and I started tamoxifen two months ago.  I have been cycling wildly in the last week or so for no reason that I could understand. Lo and behold I have started vaginal bleeding. Not heavy but enough that the hormone fluctuation is playing bipolar havoc. 

I am off to doc. next week and asking for ooph. Onc said I didn't need it but I can't cope with this. This is where it is clear that they only look at the BC side of things.

pallir

Dear Kyliet,

PLEASE don't have the ooph without considering two things and asking a dr. you trust about them.

1. See if you can find a book entitled "What Your Doctor May Not Tell You About Menopause" by Dr. John R. Lee. (johnleemd.com)  I buy his books at 2nd hand bookstores and give them away to others. Check there if you decide to buy.

He talks about the role that natural progesterone plays in balancing women's estrogen. I just went and looked at the book again last week to see what he says about low progesterone and bc. I truly believe that it has been a factor in my bc.

From the time I was 13 and my periods started, they were erratic with PMS to the max, heavy, heavy bleeding for three weeks then no period for 5 months. (Wicked stepmother took me to see if I was pregnant - at 14! in 1969!)

Things got worse with each pregnancy.  Postpartum depression that became postpartum psychosis after my third child.  And what is happening during pregnancy? Progesterone production off the charts to maintain the lining of the uterus and the pregnancy.  And what happens about three days after birth? That progesterone drops back to normal, which in my case was far below normal and the PPD would begin.  Wonderful dr. prescribed desipramine and it changed everything for the better. . . for awhile.

I kept telling my OB-GYN specialist that each month, prior to my period, I felt like someone was "going" - either me or someone else and because I could never cause someone else physical harm, I was afraid it was going to be me.  He said it was in my head and sent me to psych.  NOW it is disgnosed as PMDD.

The reason I mention this is because I was hospitalized twice, as an adult, with severe depression and the second time with suicidal ideation.  I didn't want to kill myself; just wanted to go home to God...felt like He'd understand that I'd tried my best...just wanted to have the emotional pain stop, the anger and guilt of being "less than" as a mother, wife, everything. Each time, within three days of admission, my period would start. Immediate normalcy; I was fine.

During the second hospitalization I was finally diagnosed with MPD. It generally goes misdiagnosed on avg. of 7 yrs. (I definitely stayed at the hospital...my head was clear after my period started and we'd paid BIG bucks and, by God, I wanted to get some answers! I KNEW it wasn't just the MPD.) When I came home, I was flipping channels and heard a woman describing my symptoms and heard Dr. Lee interviewed.  He believes that the pharmaceutical companies drive the treatment for women and their hormonal issues; and that natural progesterone is the answer for many of the issues unique to women. He believes that estrogen dominance is the culprit and that by balancing our progesterone and estrogen, lives can be changed for the better.  He doesn't promote any brand; merely gives the desired amount needed and lists manufacturers that he knows are reputable and accurate as to the progesterone amount indicated.

Before I began using progesterone, one ob-gyn put me on Lupron.  After two weeks on it, I WAS suicidal.  I cannot tell you how desperate I was and the condescension of the drs. was absolutely maddening.

I was forced to have my uterus and cervix removed 7 yrs ago (age 50) as a result of a horrendectomy by my gyn. (That's what the revue boards call it when they amputate the wrong leg, etc.)  I kept my ovaries because I saw the effect of no ovaries on my sisters. I was also afraid that no ovaries might = the same effect as the Lupron.

2. I have thyroid tumors, and as I was reading about it, I came across hyperparathyroidism-too much parathyroid hormones due to benign tumors on the glands (4 of them on the thyroid gland, itself). What I read made me angry at the inability of most drs. to shift their paradigm and then gave me hope because, for me, this made perfect sense; especially as I read the symptoms.

I won't continue to bore everyone, but if you or anyone else reading this thinks that there can be a domino effect in our bodies and/or brains when the hormonal balance is thrown off kilter, please read what Dr. Norman has to say on his website at www.parathyroid.com. And just as soon as I can get the ok following my reconstruction (love my new ps!), I'm taking my thyroid tumors down to see Dr. Norman.

There also seems to be a link between hyperparathyroidism and hypercalcemia (buzzel.com lists the symptoms)-high levels of calcium; hypercalcemia and lithium; hypercalcemia, hyperparathyroidism and cancer, especially bc.

I'm new to posting, so I hope I haven't over stepped. But if I have, then anyone that wants to pm me may do so and I will share what I know.  I just hate to think of one more woman getting one more thing removed unless that dr. is a competent diagnostician willing to do the same thing to his mother or sister or wife or daughter given the same circumstances. You deserve that degree of care.; we all do.

Oh, sometimes it makes a condescending specialist angry if you say, "Please don't take these questions the wrong way doc, but someone graduated in the bottom third of their class, if you know what I mean. And if you're to remain my doctor, that can't be you." Hey, I said it in my sweetest southern drawl, and they still seemed to take offense . . .

Also, my mom once asked me, "Well, Angie, what do you think they call people who graduate with a D from med school? . . . Doctor!" 

I appreciate y'all.

Angie

kyliet

Angie, you really made me laugh with your D = Doctor. 

Dont ever apologise for posting. It is everyones perspective that helps us to research aspects we may never have thought of. I will def. check it out thanks.

I would like to try lupron as it is reversable and then go from there. But still a lot of research and big decisions to make.

1Athena1

Hey, Kyliet, you say,

I am off to doc. next week and asking for ooph. Onc said I didn't need it but I can't cope with this. This is where it is clear that they only look at the BC side of things.

Fellow bp-er here, as you know....My fear about an ooph is that I could have the same experience as with hormone therapy but worse because it's permanent. I finally went to an Obgyn who performed an endometrial ablation, a very simple outpatient surgery that can drastically reduce or stop the periods without depriving you of estrogen. Of course, oncs never tell you that is an option. I so identify with your frustration.

My periods, like yours, went absolutely haywire with Tamoxifen, as did my bipolar. I had to make the decision to go off it myself. I even began to suffer from severe PMS which I never did before the cancer. Contraceptives, another way to stop periods, are contraindicated, but an endometrial ablation is not. I would suggest that you ask your doctors about that option. The surgery was very successful in my case and my QOL significantly immproved.

1Athena1

Angie, NEVER apologize for posting - especially here!

Lupron almost did me in too. I am convinced that it contributed to my second hospitalization of 2009, which was for mania, but my mental health deteriorated generally. I have come to the conclusion that I need my estrogen, period, and cannot live without it. I've got a far bigger chance of dying from estrogen deprivation than deom BC.

Besides, there is evidence that estrogen may not have the connection to BC that was once thought. 

pallir

Hi Athena,

It isn't the estrogen, it is the unopposed estrogen as a result of progesterone deficiency, according to Dr. Lee.

Under stress the body cranks out adrenalin; so much so that it can't keep up if the stress is prolonged and/or severe - as in mental illness of any kind.  As a result, the body takes the progesterone from the ovaries and uses it to meet the adrenal deficiency.  The receptor accepts the progesterone as "close enough" and "makes do" until the stress subsides. The body figures that under such stressful and constant "fight or flight" reactions, survival supersedes reproduction.  Think of women whose periods have stopped due to stringent restrictions to diet or sports - runners, athletes, eating disorders.  This is a result of the progesterone being pulled from the ovaries to support the overwhelmed adrenal system. As a result, the estrogen continues to be produced without enough progesterone available to balance it and the body becomes estrogen dominant. It's more complicated than I am explaining, but Dr. Lee does a great job.

Another thing contributing to my estrogen dominance was the fact that our fat cells produce estrogen! Estrogen dominance causes our body to store fat and that fat manufactures estrogen- which grows unchecked because our progesterone is busy trying to support our adrenal system that is unable to cope with the stress . . . and the drs. were pushing anti-depressants that gave me the sex drive of a eunuch AND caused me to gain huge amounts of weight!

I, too, had ablation therapy.  It worked great for stopping the heavy periods, but that was the horrendectomy I spoke of. Apparently, I should not have had the procedure due to previous surgery for cervical hyperplasia. In spite of this, she operated and the pathologist noted hyperplasia and asked for additional tissue samples to rule out cancer. (She was supposed to wait for the lab results before disposing of the remaining tissue, but she didn't...end of the year and we were lined up on gurneys in the hall!) Unfortunately, scar tissue formed just beyond the cervical opening and prevented access to the upper uterine wall to rule out cancer, and I had to have it removed 2 years later just to make sure there wasn't cancer.  The pathologist was a wonderful man and very helpful...said, "If you were my loved one, this is what I would have you do ..." The other dr. changed the surgical notes and refused to give me a copy of the actual surgical notes...the receptionist kept whispering that they would be forwarded to my new dr.! So, I stood in the waiting room and, in an assertive voice (louder than one expects to hear in the waiting room), I stated repeatedly,"I need a copy of the surgical notes for my personal records. I am entitled to them according to the contractural agreement between Dr. ___ and my insurance provider, and I am not leaving until I get them."  So to shut me up, they gave them to me; PDQ.

I LOVED ablation therapy and would recommend it to anyone that is eligible. Just be sure that you have no issues that might complicate it for you.  My sister had a D&C for the same reason after she'd had all of her children and it really helped with the heavy periods.

ALL the things I mention here are just what I have been through over a LONG road before I was even diagnosed with bc in June.  AND NONE of these experiences involved any chemo, etc.  I only mention them in the hope that there may be something useful to someone - I've learned to research what I can and to listen to my body and sometimes things just seem to click.

Even a blind squirrel finds a nut once in a while! I admit to being "squirrely", as we say in the south, bu thank God I am not blind

Kyliet, I strongly agree with Athena about irreversible decisions. Desperation and fear have never given rise to good decisions in my life.  Your fears and BP symptoms are real, just as my MPD symtoms are real, but we KNOW they are not reality.  Our chemical imbalances alter our perception of reality and we need help to get things congruent.  We have to believe there is a way out, even when there is no evidence to support it.  Over the past few months, when a little part was "stuck" out, I couldn't even pray.  My DH would pray for me, not WITH me, because that little one doesn't believe or trust that God cares about "us" at all ... like a little child, I just wanted to tear the expanders out of my body. They hurt and were scary and WE never agreed to THIS...no one asked US!!! Never before was my MPD so bad . . . with a little, terrified one stuck "out" and unable to deal with big person problems.  But my DH did what I couldn't do for myself in my almost catatonic state, he believed for me. He held my unresponsive hands in his and cried the tears that I couldn't and asked for the grace to get through that moment, that day. He was faithful to do that for me even though there was no immediate changeor even a response most of the time.  That little one doesn't trust him either, and he's certainly not her DH!

Things are better now. But nothing is stable.  All it takes is my DH asking if he can put my papers away that are in piles in the family room, and all of a sudden I am feeling little and defective and a problem and unlovable and scared and . . .  I say all of this to you to let you know that although I am not BP (they misdiagnosed me with that - twice), I do know what it feels like to have my body completely out of sync; robbing me of all hope, joy, peace - even the ability to feel love from those closest to me.

So, I will intercede for you, and for you, too, Athena.  I will be praying for you, both; believing for peace and hope in those times when you can't do it for yourselves.

Athena, I don't take anything for the MPD.  I hesitate to explain what finally has helped me because unless someone knows the struggles and desperation, the pain and heartache suffered by me and my family for most of my life, in order to get to this place in my journey, it might seem foolish to them.  I still struggle, as you know, but there's hope; hard won and solidly built over many, many years. And I hold on to that; for ALL my parts - there is no going back for me.

There is a song that personifies it best for me.  Really, there are so many, but this one comes to mind right now.  Two years before the bc, my heart was broken over a situation involving my daughter, in the midst of this, my older son shared something with us that broke my heart . . . for him.  So much pain and nothing I could do, no way to help them- their lives, their paths. Then I heard this song written by an artist whose friend's 4 yr old daughter was dying with cancer. The mother prayed. . . they all did. They believed and trusted God, yet their daughter died. So this member of CASTING CROWNS wrote this song about this mother's faith. It is called PRAISE YOU IN THIS STORM, and it became the cry of my heart  . . . and still is. I hope you will read it.

Praise You In This Storm 

I was sure by now
That You would have reached down
And wiped our tears away, stepped in and saved the day
But once again, I say, Amen and it's still raining

As the thunder rolls
I barely hear Your whisper through the rain, "I'm with you"
And as Your mercy falls I raise my hands
And praise the God who gives and takes away

And I'll praise You in this storm and I will lift my hands
For You are who You are no matter where I am
And every tear I've cried You hold in Your hand
You never left my side and though my heart is torn
I will praise You in this storm

I remember when I stumbled in the wind
You heard my cry, You raised me up again
But my strength is almost gone
How can I carry on if I can't find You

As the thunder rolls
I barely hear Your whisper through the rain, "I'm with you"
And as You mercy falls I raise my hands
And praise the God who gives and takes away

And I'll praise You in this storm and I will lift my hands
For You are who You are no matter where I am
And every tear I've cried You hold in Your hand
You never left my side and though my heart is torn
I will praise You in this storm

I lift my eyes unto the hills
Where does my help come from?
My help comes from the Lord
The Maker of Heaven and Earth

I lift my eyes unto the hills
Where does my help come from?
My help comes from the Lord
The Maker of Heaven and Earth

And I'll praise You in this storm and I will lift my hands
For You are who You are no matter where I am
And every tear I've cried You hold in Your hand
You never left my side and though my heart is torn
I will praise You in this storm
And though my heart is torn
I will praise You in this storm

It's a beautiful song. You can listen to it on line by looking up the group or searching song lyrics.

God bless y'all,

Angie

 

1Athena1

Does anyone here find that the holidays are hard? I am not looking forward to Thanksgiving this year. It has been a hard year for the bipolar. My family is typically clueless and more judgemental than supportive, so I am planning to do something alone. I can't even rely on them to pick me up in time. It's incredible. It's sad to have to choose between being around incomprehension and being alone. I seek no advice, but does anyone with mental illness have this problem?

kyliet

Hi Athena, we dont have Thanksgiving here in Australia, but Christmas is looming on the horizon. I can understand your fears. I don't cope very well with any new situation and luckily hubby and kids try to take me anywhere new and do the majority of the driving for me, but these are the only family I can deal with.

My sister said the other day that she can tell when I am bad with bp as I 'drop off the radar' - well take a hint. I don't want to talk to anyone, I don't want to listen to their cr*p and I think you put it so well - their 'incomprehension'. Thoughts of Christmas make my head feel like it is going to burst. We have to stay with relatives and the thought of having no escape is horrible. Thinking of you for a stress free day. Hugs x

1Athena1

Thank you, Kyliet - I will be thinking of you around Christmas too. I have no safety net (husband) so my option is to stay alone. My sisters each have children and it seems that the rest of us have to dance attendance around that. They don't understand that I have needs too. My mother, who lives abroad but comes here about 4-5 imes per year, loves being a mother, so there is something in it for her, I suppose.

As you say, I wish they would get a hint. I drop off the radar because I dislike being told we will see each other in such and such a way, then having plans changed on me at the very last minute for reasons that were foreseeable, then me being asked to make some uncomfortable change so that they don't have to suffer the plans change. It happened today and I am amazed how I put up with it.

I am usually more manic than depressive but I think my family's unreliability has helped to foster depression recently. I have to be: -on the go whenever they say so or risk being called a party pooper --listen to them and their dramas and not be listened to. --say nothing if and when they decide to endlessly delay, change of cancer (more fool me).

My psychiatrist finally said he thought my family were narcissists. I feel this filial obligation and a part of me remembers the smetimes nice times, but when they decide to blow off the plans, change them, etc.... it makes you feel so small, unloved and like trash....my closest cousin is like that too. BTW, it is  waste of time to try to tell them this. They are not the listening types...they are the arguing types -= as in, I am right and you are wrong.

Arghhhhhh....off to see what I can do about Thanksgiving this year - and with no transportation - lol!

Family has definitely made my cancer and bipolar experiences much worse.