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

Forum: Breast Cancer with Another Diagnosis or Comorbidity — Meet others who have breast cancer but also have another health diagnosis/comorbidity such as diabetes, MS, bipolar disorder, HIV or AIDS, Parkinson's Disorder, schizophrenia, etc.

Posted on: Nov 13, 2012 10:50AM, edited Dec 11, 2012 04:31PM by 1Athena1

1Athena1 wrote:

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!)

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Nov 19, 2012 02:58PM 1Athena1 wrote:

I found this article today - not new, but still a mystery as to why that is so - could be due to disruptions in the endocrine systerm?

Serious Mental Illness Increases Risk Of Cancer And Injuries

http://www.medicalnewstoday.com/printerfriendlynews.php?newsid=248101

Excerpt:

Serious Mental Illness Increases Risk Of Cancer And Injuries

A new study, published in this month's journal Psychiatric Services, suggests that the risk of developing cancer is 2.6 times higher in those who suffer from a serious mental illness, such as bipolar disorder, debilitating depression or schizophrenia.

The new Johns Hopkins research highlights whether patients with serious mental illnesses are adequately screened for cancer and receive preventive care that is linked to cancer risk factors like smoking.

Leading researcher Gail L. Daumit, M.D., M.H.S., an associate professor of medicine and psychiatry at the Johns Hopkins University School of Medicine declared: "The increased risk is definitely there, but we're not entirely sure why. Are these people getting screened? Are they being treated? Something's going on."

Anyone diagnosed with cancer should learn to have a healthy disrespect for statistics. Statistics are maths. It's the science which still eludes us.

Dx 3/2009, IDC, 3cm, Stage IIb, Grade 3, 3/8 nodes, mets, ER+/PR+, HER2-
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Nov 21, 2012 02:49PM 1Athena1 wrote:

To anyone in the US participating in or reading this thread - HAVE  HAPPY THANKSGIVING.

I know that sometimes it is really hard to find things to be thankful for, and it can often be depressing to celebrate the holidays. It can trigger depression in many people with mental illness, or cause us to relive painful family relationships. And the pressure of "celebrating" can be overwhelming.

So I will just say that I will be thinking of those for whom the holidays are more suffering than joy. Monday will be here in no time!

Anyone diagnosed with cancer should learn to have a healthy disrespect for statistics. Statistics are maths. It's the science which still eludes us.

Dx 3/2009, IDC, 3cm, Stage IIb, Grade 3, 3/8 nodes, mets, ER+/PR+, HER2-
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Nov 22, 2012 09:36AM steelrose wrote:

Hey Athena! I just stumbled upon this thread, and I want to wish you a peaceful Thanksgiving. Too much pressure, expectation, blah, blah, blech, associated with the holidays. And I'm missing way too many people this year! So I'm personally spoiling myself all the way through 'til the clock strikes midnight and 2013 dawns. Then I'm really spoiling myself!!!! Buy something fun online, eat something delicious, celebrate YOU!

xoxo
Rose.

Dx 1/22/2010, IDC, Stage IV, mets, ER+/PR+, HER2-
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Nov 22, 2012 05:02PM 1Athena1 wrote:

Oh, ((((Rose)))) so nice to both hear from you and see you on this thread. The expectations game regarding long weekends can be brutal. If I am going through a depression it can set me back. I am glad that you plan to spoil yourself rotten - you deserve it! Luckily I had a good time with my family today. Maybe I, too, am in a slightly better place.

That retail therapy is the best!:-)

Anyone diagnosed with cancer should learn to have a healthy disrespect for statistics. Statistics are maths. It's the science which still eludes us.

Dx 3/2009, IDC, 3cm, Stage IIb, Grade 3, 3/8 nodes, mets, ER+/PR+, HER2-
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Nov 22, 2012 08:47PM, edited Nov 22, 2012 08:54PM by pallir

Hi Miss Athena,

I have been out-of-pocket since having the Stage I LSGAP on Nov. 17th.  Everything is doing very well except that this whole process of "hackin' and whackin'" and moving body parts around is freaking out my "little" MPD parts!

It is one thing to be split and fractured on the inside - we "understand" it; and by that I mean that I've had it since diaper age and know what it looks like and for the most part, how it behaves.  But to have our outside body parts cut up and moved around is incomprehensible to the "system". What the hell? They are just baffled about how to react and deal with things; what to expect or anything.  Nothing is what it seems - I mean right now I am looking at fine hairs on my "football" flesh part of my new right breast(!) How strange is THAT? If the nerves eventually return to my breasts and my husband touches one, will it feel like I'm being "goosed"?? 

Except for a couple of the parts, everyone else is watching what is happening to me and saying, "Hey, how did this happen?. . . who was supposed to be in charge?. . . well, it's not MY fault we got cancer . . . who the hell picked that first doctor???. .  . well, it wasn't me and nobody said it was your fault; it's nobody's fault; it just IS; hey, what are they doing now?. . .oh my God, look at that hole in our butt cheek, who the HELL OK'd THAT???? . . man, this whole thing is gettin' way out of hand . . . OKAY, just chill out; you don't have to figure everything out.  You are little, and little ones aren't expected to handle adult decisions or choices. Things will be okay, no matter how things look.  We can trust Dr. Flores, and NOT being in control only FEELS scary;which is good because y'all only think you are in control, in the first place!"    

Some parts haven't been happy about the fact that our container doesn't even look like their "self" image . . . they are stuck at  different ages and sometimes they get angry about the effects of normal aging. It's like having one party dress that several sisters have to share and by the time one of the sisters gets her turn to wear it to a party, it's so faded and worn looking that she barely recognizes it.  After all, she has only worn it a couple of times and NOW look at the thing!!! and who decided to completely remove the bodice and take part of the fullness out of the skirt in the back and make a new one?? 

In reality, most every part inside is in a holding pattern until things are done and they can take stock and figure out what kind of garment we end up with and THEN decide how best to wear our new self.  Things are getting better, and I am hopeful.

Thank you for the happy holiday wishes.  My husband is missing Thanksgiving because he had to pick up a trip (he is a pilot) to make up for the one he had to drop in order to be with me for my surgery last weekend.  I was sad and feeling depressed about not being able to make Thanksgiving dinner.  My 28 yr. old son offered to cook the spread for me, his brother and himself.  Well, this morning (about noon!) when I finally woke up and gathered enough energy to take a shower, I began to tell my son about how he has to disinfect the sink and wash the turkey...unless it isn't thawed; in which case he would need to fill the sink with cold water and continue to swap out the water until it was COMPLETELY thawed and then . . .

By the time I said all of that I was out of breath! So, I asked the boys (26 and 28) if we needed to regroup.  They started laughing and the younger one assured me that it wasn't going to ruin any of his Thanksgiving memories because it's not about the food for him but the fellowship. The older one said that it didn't matter to him either way; just whatever was easiest for me. Bottom line: they went to WalMart and bought deli food and frozen pizza and Dr. Pepper...and VOILA!... Thanksgiving dinner! We also opted to watch old Star Trek reruns over football! I tell you, we are pushing the boundaries of acceptable behavior for civilized Americans.

I hope you have had a good day.  I always had this "Hallmark card" expectation of extended family get togethers  around any of the holidays. After being married, for twenty-three years, we never lived close enough to celebrate the holidays; and I built up an unrealistic expectation of how "wonderful" it would be.  Well, seven years ago, we moved within six hours of family, and me and mine all piled into the car for our first foray into the long standing Thanksgiving get together at my sister's house.

Not what I'd expected.  Sometime when we have hours to share, I'll tell you about the experience.  Right now, suffice it to say that my being an introvert and reverting back to my 'co-dependent family-of-origin self' combined with years of therapy that hindered me from "understanding" the unspoken (but very real) expectations and indirect dysfunctional communication playing out between my 5 siblings, their children, grandchildren, dogs, friends etc. resulted in my realizing that I did NOT enjoy Thanksgiving or my family under those circumstances. I forgot to mention that my sister's husband's 5 siblings, children, grandchildren and dogs and his mother were also there and the mother-in-law kept making wise cracks about how "some people don't know how to read a clock...where ARE your sisters (#2 and #6)?" She then proceeded to chastise my 53 and 41 yr old sisters in front of 27 other guests for being "tardy" and inconveniencing everyone else . . things went downhill from there.

I came home and made the choice to never do that to myself again. They would invite me and I'd decline.  One sister mentioned the long drive or some other reasonable excuse, and I could've let them all think that.  Instead, I told all of them that although I loved them and they were all used to this tradition, I wasn't - and would never enjoy myself under those circumstances. So many people acting so dysfunctionally with backbiting and unspoken expectations about one another that results in unresolvable conflict (because the person has NO idea they have even done anything) costs me too much emotionally and causes me to not enjoy my family. I explained that I would NOT be coming to ANY huge gatherings that include our large extended family and other people's families' as well.  It is hard enough to have grace and mercy for one's loved ones in a family as big as ours - it would seem that it is impossible to do so when you add other families into the mix.

I heard that some people in my family weren't happy with me, but since they seldom directly communicate their issues, I choose to believe they love and respect me for taking care of myself. If I find out differently, I can deal with it at that time, meanwhile, it is healthier to think, act, and surround myself with unconditional love...even if that means being alone.

Well, it has taken me many hours to stop and start writing this.  Maybe you and Miss Rose are the only ones on here, if you still are.  God bless you both - I can't wait to get the go ahead to pluck the hairs out of my new hiney boob...

pallir 

Dx 6/12/2012, IDC, Stage I, 0/3 nodes, ER+/PR+, HER2-Surgery 11/17/2012 Reconstruction: GAP flap (Right)
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Nov 24, 2012 10:25AM, edited Nov 24, 2012 10:54AM by 1Athena1

pallir, I am glad your surgery is over - congratulations -a huge step for you! You should be proud.

I had to endure my first ever taste of Thanksgiving and football - yuck! My two nephews had to watch a game and in this annyingly kids-centered world they were allowed to. When it comes to American team sports and all the kitsch surrounding it - I am not at all American!

It is weird, isn't it - to have skin that behaves differently in a different part of the body. I had reconstruction with implants, so the only thing that moved was "material" from my abdomen to make the nipple. But it is confounding.

I don't think a lot of people have the Hallmark life, although many pretend they do. I had a very nice Thanksgiving this year, for which I am thankful, but I've had my share of bad ones. I think this year I just learned to adjust expectations to reality - and we had good food. :-)

I have gotten over my family's lack of support when I was struggling with bipolar hospitalizations AND breast cancer. I have gotten over it in that I don't forgive it but I accept that that's how it is. I realize, to my surprise, that they love me more than I do them. My problems were too "exotic" - they preferred to rally around my narcissistic oldest sister whose marriage was collapsing.

Funny how people who mess up of their own violtion (drugs, divorce) get more sympathy than those who don't (mentall and physical illness).

Unfortunately, they also see me as strong and less needy, which sometimes makes me angry. I don't want to have to be strong - and had they shown more support, the strength I mustered wouldn't have been necessary.

Lionesses will use all of their strength to capture and kill prey, but they try to avoid that. Use too much strength too often and you asre left scarred and weakened - NOT stronger. That bs that "what doesn't kill you makes you stronger" must have been coined by someone with a cushy life. Maybe the person had one or two bad turns and learned from it. But for many of us, what doesn't kill you now could kill you later - whether it's cancer or mental illness.

Off soap box:-)

Hope everybody else this holiday season who has been misunderstood and emotionally abandoned by loved ones is able to recover.

I have a wonderful doctor for whom I am very thankful.

Anyone diagnosed with cancer should learn to have a healthy disrespect for statistics. Statistics are maths. It's the science which still eludes us.

Dx 3/2009, IDC, 3cm, Stage IIb, Grade 3, 3/8 nodes, mets, ER+/PR+, HER2-
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Nov 24, 2012 04:14PM steelrose wrote:

I'm very happy to hear that you had a nice Thanksgiving, Athena, despite the football! I enjoyed the holiday too... my "spoiling" so far has only involved food and sleep, but I have my eye on some clothes online!

Although I've never been diagnosed with mental illness, I've been on Arimidex for 2 years now and it's produced some major mood altering side effects. Depression, anxiety, panic attacks, tearfulness... it's pretty intense at times and I can't imagine going through this with a pre-existing mental condition. But in my case at Stage IV, I'm very grateful to be in remission and I do know that Arimidex contributed to that. I may have quit the Arimidex if I was diagnosed at an earlier stage, who knows? Fear drives me onward. This is an important thread, and no doubt very helpful to many people. You're a great contributor to us all (fabulous election coverage by the way!), and I will follow you here. You've been through quite a lot, and you have quite a lot to offer!

Love to you,
Rose.

Dx 1/22/2010, IDC, Stage IV, mets, ER+/PR+, HER2-
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Nov 26, 2012 10:24AM 1Athena1 wrote:

Rose, you are too sweet.

I do hope others who read here and have a story to tell come forward. I can say that between my early stage cancer and the bipolar, dealing with the bipolar has been by far the hardest, but that would likely not be the case if I were stage IV.

I can totally understand how you would stay on Arimidex - the SEs can't be half as bad as, uh, liver failure, lung failure, brain mets....easy choice, in other words.

Are you getting any help from an anti-depressant, by the way? Sometimes a plain old mood stabilizer may help too. You are describing what also sound like PMS symptoms - I got those a lot on Tamoxifen and I know lots of other people on AIs have them. If you either have liver mets or concerns about liver mets you can take medications that are processed not by the liver but by the kidneys.

Love to you back!

"A"

Anyone diagnosed with cancer should learn to have a healthy disrespect for statistics. Statistics are maths. It's the science which still eludes us.

Dx 3/2009, IDC, 3cm, Stage IIb, Grade 3, 3/8 nodes, mets, ER+/PR+, HER2-
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Nov 27, 2012 08:26PM steelrose wrote:

Athena...

I'm not on any meds for my moods... yet. I think it's a simple case of estrogen deprivation. The Arimidex plus ovaries removed at 46... grrrr... Honestly, I feel so lucky to be alive, and to be doing well! It was a horribly rocky road for awhile. Thanks for your concern.

Really just wanted to give you a wave, and wish you the best with this thread. And hey, I'm a cat lover too... big and small. It's been a dream of mine to go to Africa, and I'm going to try to make that happen next year! Can't imagine seeing those big cats up close.  

I hope more people will come forward with their stories, as you have.

xo

Rose.          

Dx 1/22/2010, IDC, Stage IV, mets, ER+/PR+, HER2-
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Dec 7, 2012 10:12AM Momine wrote:

Athena, I do not have a major mental illness, but my brother (schiz) and a dear auntie (bipolar I) do. I absolutely hear you on docs needing to be more respectful both of those illnesses and the people who have the illnesses. I can imagine hormone therapy being scary in conjunction with bipolar.

With the amount of cancer in the family, it is really only a matter of time before my brother gets some kind of stupid cancer too, and it could get extremely difficult.

Dx 6/1/2011, ILC, 5cm, Stage IIIb, Grade 2, 7/23 nodes, ER+/PR+, HER2-Chemotherapy 06/20/2011 Cytoxan, Ellence, fluorouracil, TaxotereSurgery 09/13/2011 Mastectomy (Both)Radiation Therapy 01/09/2012 ExternalSurgery 03/08/2012 Prophylactic Ovary Removal (Both)Hormonal Therapy 04/01/2012 Femara
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Dec 7, 2012 10:22AM 1Athena1 wrote:

Wow, Momine, poor thing. People with schizophrenia, like those with bipolar, do have higher incidences of cancer, although the reason is not known. In fact, when I have some proper time I want to get together some literature about cancer incidence and mental illness. It's not a nice combination to treat.

Thanks for sharing, and I hope your brother never does get this disease.

Anyone diagnosed with cancer should learn to have a healthy disrespect for statistics. Statistics are maths. It's the science which still eludes us.

Dx 3/2009, IDC, 3cm, Stage IIb, Grade 3, 3/8 nodes, mets, ER+/PR+, HER2-
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Dec 9, 2012 12:55AM kyliet wrote:

Momine how lucky they are to have you to care about them.

One thing I have noticed that is really not taken into consideration is what is involved in making a decision for someone with a mental illness. As you will all know, you don't just take the options on board, maybe research them, and make a hopefully informed decision.

My 'specialists' had trouble understanding this and would expect me to make on the spot decisions and not want me to change my mind several times in the next week, that's just not how my mind works.

When life gives you a 100 reasons to cry, show life you have a 1000 reasons to smile. Mulitfocal, ECE, lymph. channel invasion, Chemo. RADs. Arimidex. Monthly Zoladex.

Dx 11/11/2011, IDC, 1cm, Stage IIa, Grade 1, 3/26 nodes, ER+/PR+, HER2-
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Dec 9, 2012 09:57AM, edited Dec 9, 2012 10:00AM by 1Athena1

kyliet, I have been trying to find some articles that talk about the challenges of breast cancer with mental illness. There are few and far between. Most talk about the challenges of treatment.

I would LOVE to get hold of the full text of the following article (without having to pay) - here is the abstract -will try again tomorrow:

Lancet Oncol. 2010 Aug;11(8):797-804. Epub 2010 Jul 3.

Cancer diagnosis in people with severe mental illness: practical and ethical issues.

Source

Health Service and Population Research Department, Institute of Psychiatry, King's College London, London, UK. louise.howard@kcl.ac.uk

Abstract

There has been increasing recognition of the high physical morbidity in patients with severe mental illness, but little has been written about cancer in these patients. Therefore, we review the published work on risk of cancer in patients with severe mental illness, treatment challenges, and ethical issues. Severe mental illness is associated with behaviours that predispose an individual to an increased risk of some cancers, including lung and breast cancer, although lower rates of other cancers are reported in this population. Severe mental illness is also associated with disparities in screening for cancer and with higher case-fatality rates. This higher rate is partly due to the specific challenges of treating these patients, including medical comorbidity, drug interactions, lack of capacity, and difficulties in coping with the treatment regimen as a result of psychiatric symptoms. To ensure that patients with severe mental illness receive effective treatment, inequalities in care need to be addressed by all health-care professionals involved, including those from mental health services and the surgical and oncology teams.

Anyone diagnosed with cancer should learn to have a healthy disrespect for statistics. Statistics are maths. It's the science which still eludes us.

Dx 3/2009, IDC, 3cm, Stage IIb, Grade 3, 3/8 nodes, mets, ER+/PR+, HER2-
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Dec 9, 2012 11:11AM, edited Dec 9, 2012 11:16AM by 1Athena1

I think a lot of the time doctors leave the decisions up to us because they, themselves, don't know what to do. Perhaps medical training is becoming too compartmentalized by specialty? I am now taking 1/2 mg/day of progynova (I think that's estrace, or estradiol) per day to prevent myself from killing myself on certain days of the month. It sounds comical, because I can also get dangerously manic if not on treatment, but it's true. My psychiatrist would not prescribe hormone therapy. My obgyn only reluctantly agreed, but wanted to wait until my suicidality returned to see if the estrogen was really low (hmmmm...I wonder how many doctors would let a patient reach heart failure or liver failure before agreeing to  treatment...this is head failure). I decided that waiting was a risk to my life, so I started taking hormones on my own. How is that fair to a patient. Haven't broken the news to my long-suffering onc, but I don't know what part of the word "suicidal" these medical practitioners don't understand.

Earth to cancer or cancer-obsessed doctors: Believe it or not, there are other things that can kill you besides cancer. And that includes the treatment- especially if you have a mental illness that requires lifelong treatment.

Probably sound like a broken record, but I believe there needs to be more awareness around this issue. Doctors need to treat the whole patient and not just the cancer.

Lioness to world: If you are reading this and it helps you, I am glad. Even better if you post and share your own thoughts. Others may read YOU and be helped.

Anyone diagnosed with cancer should learn to have a healthy disrespect for statistics. Statistics are maths. It's the science which still eludes us.

Dx 3/2009, IDC, 3cm, Stage IIb, Grade 3, 3/8 nodes, mets, ER+/PR+, HER2-
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Dec 9, 2012 12:58PM jennyrjd wrote:

I have chemical depression, and anxiety, and adhd.  When I was diagnosed with er/pr+ cancer I was much more upset about having to get off estradiol than having the cancer.  It kept me on an even keel.  I take an AI because I will not give up my antidepressants.  Now, even with them, I am having extreme trouble with mood swings, being extra sensitive, wanting to run away from the world, crying at work, fighting depression.  I know my doctors have no clue what to do.  I am going to try to add a third antidepressant to the mix to see if it helps. 

Of course I want a healthy, sane life and also to fight this cancer and the onco said my best shot is the  anti hormonal therapy.

Dx 2/2/2012, IDC, Stage IIa, Grade 2, 1/15 nodes, ER+/PR+, HER2-Surgery 03/05/2012 Lumpectomy (Right); Lymph Node Removal: Sentinel Lymph Node Dissection (Right)Surgery 04/16/2012 Mastectomy (Right); Lymph Node Removal: Axillary Lymph Node Dissection (Right); Prophylactic Mastectomy (Left); Reconstruction: DIEP flap (Both)Chemotherapy 06/04/2012 Cytoxan, TaxotereHormonal Therapy 10/08/2012 FemaraSurgery 11/05/2012 Reconstruction: Nipple reconstruction (Both)
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Dec 10, 2012 10:32AM 1Athena1 wrote:

jennyrjd - wow, you are dealing with a lot! It must have been hard to go without the estradiol on top of getting cancer.

On Tamoxifen I was so sensitive I think I would have taken umbrage, from DC, at something someone in China hinted to his neighbor. It's awful, and half of the time you wonder whether it's "just you" or whether the world has gotten that much more unpleasant all of a sudden.

May I ask what anti-depressants you are on and which third one is being considered? Are you on anything for the ADHD?

Anyone diagnosed with cancer should learn to have a healthy disrespect for statistics. Statistics are maths. It's the science which still eludes us.

Dx 3/2009, IDC, 3cm, Stage IIb, Grade 3, 3/8 nodes, mets, ER+/PR+, HER2-
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Dec 10, 2012 06:50PM jennyrjd wrote:

I take Wellbutrin 450 mgs, paxil 60 mgs, Daytrana patch for ADHD, Clonopin for anxiety and I am considering Viibrid or maybe Pristiq.  I would like to get off the paxil because it kills my sex life but I have never been able to do it.  I would like to get off the Wellbutrin too because without the paxil I think it will increase the anxiety. 

Athena, I swear I would do the new electric shock therapy if I thought it would work!  I get so tired of trying to play chemist with my mental health.

By the way, I don't drink, smoke, I exercise, only read and watch positive things, get sleep, have a great therapist and support group too. 

Just wanted you to know I don't rely just on pills. Cool

Dx 2/2/2012, IDC, Stage IIa, Grade 2, 1/15 nodes, ER+/PR+, HER2-Surgery 03/05/2012 Lumpectomy (Right); Lymph Node Removal: Sentinel Lymph Node Dissection (Right)Surgery 04/16/2012 Mastectomy (Right); Lymph Node Removal: Axillary Lymph Node Dissection (Right); Prophylactic Mastectomy (Left); Reconstruction: DIEP flap (Both)Chemotherapy 06/04/2012 Cytoxan, TaxotereHormonal Therapy 10/08/2012 FemaraSurgery 11/05/2012 Reconstruction: Nipple reconstruction (Both)
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Dec 11, 2012 04:54AM, edited Dec 11, 2012 09:12AM by 1Athena1

Jenny, I, too do what I can besides meds which, post Tamoxifen, have not worked as well. I exercise, work as much as I can and try to find time for hobbies, etc.. I thank God that my particular malady has some positive aspects to it.

When I hear a person say they "can make it without pills" such false bravado tells me that either they don't really have a serious mental illness, they live a chaotic, disabled life and are in huge denial, or they spend their time in and out of psych. hospitals. Meds are every bit as necessary for us as they are for someone with an infection or with cancer - lack of meds can kills us. I am conscious of the fact that I have an illness - Bipolar I --that has a mortality rate of as high as 20 percent. You don't mess with that fact. Off soap box. :-)

ADHD with depression is very, very hard to cope with on a daily basis, so you must be working very hard if you've gotten this far. Upon reading your post, the following ideas entered my mind:

  • SSRIs like Paxil are definitely libido killers. I have the same experience on my current SSRI (Celexa), although I find that the libido loss lessens with time. However, there have been times this year when you wouldn't have gotten anything out of me on the sexual end if you had put a .357 Magnum to my head!Tongue Out
  • Have you asked about Lexapro? It can help with anxiety as well as depression. It can also hurt libido but it may make the Klonopin and Wellbutrin unnecessary for you....I don't know.
  • Also, Strattera, an ADHD drug. can, for some people, also help with anxiety, even though it takes a few weeks to take effect. Sometimes with stimulants like Daytrana the person may experience anxiety or irritability upon withdrawal; don't know if that is the case for you but it might be worth exploring. In a few cases, people will be put on an extra, micro-dose of a stimulant to get 24 hour treatment and that may curb any anxiety. The existence of withdrawal symptoms (they are really a rebound effect more than anything) don't mean you are addicted - they are just the nasty tail of the drug leaving your system.
  • Pristiq or Effexor may also work for depression plus ADHD. Effexor or the ADHD drug Clonidine can both also work against hot flashes, believe it or not - don't know if you are experiencing any of those on your AI? Anyway, other options to explore with your doctors.
  • If you are ready to consider ECT, it is a very safe and well controlled procedure these days. A friend of mine had it for depression and said that it helped her - but each case is different, of course. It is covered by insurance, and it can work against really bad depression that doesn't respond to meds. I think it is also used, less often, against severe, treatment resistent mania.
  • Another option, if you are really having difficulty with your symptoms, is to try older classes of anti-depressants known as Tryciclics or MAOIs - they have some cardiac and dietary contraindications, but they are worth asking about, and they can also be effective against ADHD. They were the main anti-d's that existed before the advent of the SSRIs. Some of the younger pdocs have no experience with them, so I would consult an older or very experienced psychiatrist for this reason.

Edited.

Anyone diagnosed with cancer should learn to have a healthy disrespect for statistics. Statistics are maths. It's the science which still eludes us.

Dx 3/2009, IDC, 3cm, Stage IIb, Grade 3, 3/8 nodes, mets, ER+/PR+, HER2-
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Dec 11, 2012 08:21AM Momine wrote:

Athena, somehow I missed your response, and thanks. 

My feeling is that one factor in higher cancer rates and higher mortality generally in people with mental illness is the combo of a not great lifestyle often and fear of doctors and/or medical procedures. My brother, for example, chain smokes, as do many schizophrenics, most actually. Sometimes he has periods of drinking too much, something I know can also be an issue for bipolars. When he is paranoid, he is afraid to leave his apartment, so he runs out of food. Often he has sleep disturbances, either from the illness or from the meds. None of this is conducive to good health.

The last time he was hospitalized (for the mental illness, because he stops his pills every so often, and as you correctly point out, that is not usually a great idea), he complained of knee pain. The docs wanted to do an X-ray, but he would not agree to it and freaked every time they brought it up. He is a paranoid schizophrenic, it kinda makes sense that an X-ray get-up would freak him right out, especially if he is psychotic @@ He is always afraid that they are going to lobotomize him in the hospital, for example.

Dx 6/1/2011, ILC, 5cm, Stage IIIb, Grade 2, 7/23 nodes, ER+/PR+, HER2-Chemotherapy 06/20/2011 Cytoxan, Ellence, fluorouracil, TaxotereSurgery 09/13/2011 Mastectomy (Both)Radiation Therapy 01/09/2012 ExternalSurgery 03/08/2012 Prophylactic Ovary Removal (Both)Hormonal Therapy 04/01/2012 Femara
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Dec 11, 2012 08:44AM, edited Dec 11, 2012 09:05AM by 1Athena1

Momine, studies show that what you say about lifestyle factors is true. About fear of doctors, that is likely individual; OTOH, many mental patients do have more contact with doctors than they often want to and in some cases this may mean more unpleasant experiences.

My substance of abuse was smoking - I am lucky that it wasn't drinking or drugs, I suppose (as it is with more than half of bipolars at any point in their lives). Also, partly as a result of the bipolar or perhaps as part and parcel of it, my circadian rhythms have been awful since childhood. I simply cannot sleep normally without assistance from Big Pharma; with such assistance I sleep halfway well, at best. So I had at least two major risk factors for BC.

And I am very high functioning.

For people with delusions or paranoia, it is very hard to adhere to any treatment plan. Especially for people with schizophrenia - many of the anti-psychotics produce apathy as an SE and also cognitive sloppiness which makes self-care even more difficult. That, in addition to the cognitive effect of the symptoms themselves.

Another risk factor many seriously mentally ill people, especially schizophrenics, must cope with is obesity (again, I am lucky in that respect) - the anti-psychotics can really make a person pack on pounds. I have been on them at times for short periods, and there is nothing you can do to stop the weight gain. It's awful.

Then add to that the fact that, in a manic phase or psychotic state, a person may have alienated half of the world by her/his obnoxious grandiosity, impulsiveness or eccentricity.....and by the time the cancer dx comes around others are sick of him/her and the person has to face it alone. Foot in Mouth

Fingers crossed for your brother's health, Momine!

Anyone diagnosed with cancer should learn to have a healthy disrespect for statistics. Statistics are maths. It's the science which still eludes us.

Dx 3/2009, IDC, 3cm, Stage IIb, Grade 3, 3/8 nodes, mets, ER+/PR+, HER2-
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Dec 11, 2012 09:24AM Momine wrote:

Athena, all very true. Thanks for the good wishes.

Dx 6/1/2011, ILC, 5cm, Stage IIIb, Grade 2, 7/23 nodes, ER+/PR+, HER2-Chemotherapy 06/20/2011 Cytoxan, Ellence, fluorouracil, TaxotereSurgery 09/13/2011 Mastectomy (Both)Radiation Therapy 01/09/2012 ExternalSurgery 03/08/2012 Prophylactic Ovary Removal (Both)Hormonal Therapy 04/01/2012 Femara
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Dec 11, 2012 01:33PM kyliet wrote:

Sometimes the tri-cyclics have a 'bounce back' effect and make bi-polar worse. This was def. the case with me. Its all about trial and error unfortunately.

I agree about the loss of libido, but also the fact that I put on so much weight that my body image was dreadful didn't help the situation. 

When life gives you a 100 reasons to cry, show life you have a 1000 reasons to smile. Mulitfocal, ECE, lymph. channel invasion, Chemo. RADs. Arimidex. Monthly Zoladex.

Dx 11/11/2011, IDC, 1cm, Stage IIa, Grade 1, 3/26 nodes, ER+/PR+, HER2-
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Dec 11, 2012 02:21PM 1Athena1 wrote:

jennyrjd has unipolar depression....but yes, the docs almost never give an anti-depressant of any kind to a bipolar person unless there is a mood stabilizer first.

Anyone diagnosed with cancer should learn to have a healthy disrespect for statistics. Statistics are maths. It's the science which still eludes us.

Dx 3/2009, IDC, 3cm, Stage IIb, Grade 3, 3/8 nodes, mets, ER+/PR+, HER2-
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Dec 11, 2012 05:11PM jennyrjd wrote:

Athena, about the soapbox,,,I agree with what you said.  I have tried it without and could never figure out why I was suicidal?  dah.  My husband would say are you on your meds? 

Thanks for the info you posted.  I feel like I will be able to get everything worked out again.  If not for BC, I would be feeling great.  I won't stop until I have the right combo again.  I will keep y'all updated on the outcome. 

Jenny

Dx 2/2/2012, IDC, Stage IIa, Grade 2, 1/15 nodes, ER+/PR+, HER2-Surgery 03/05/2012 Lumpectomy (Right); Lymph Node Removal: Sentinel Lymph Node Dissection (Right)Surgery 04/16/2012 Mastectomy (Right); Lymph Node Removal: Axillary Lymph Node Dissection (Right); Prophylactic Mastectomy (Left); Reconstruction: DIEP flap (Both)Chemotherapy 06/04/2012 Cytoxan, TaxotereHormonal Therapy 10/08/2012 FemaraSurgery 11/05/2012 Reconstruction: Nipple reconstruction (Both)
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Dec 11, 2012 07:45PM jennyrjd wrote:

Goodness Athena,  I was just reading your initial post and some of the others on here and you all write very well!  To answer one question....BC was horrific with my depression, and the doctors are clueless.  They only know their one specialty so it is really up to me to find the best care possible and I am the patient.  It does make me mad.  My family does not like to talk about either cancer or mental illness.  They roll their eyes at me and sayI am perfectly normal or I make things up in my mind. 

I really think I am the more normal one because I am honest about real life.  I cannot stand sweeping things under the rug.  With that being said, I am responsible to choose how much time I spend with them.  It does hurt sometimes because they are my family and I wish for more support. 

My blessing is to have found bco.org!!! 

It is interesting that so few of us have any type of mental illness.  (sarcasm) Laughing

Dx 2/2/2012, IDC, Stage IIa, Grade 2, 1/15 nodes, ER+/PR+, HER2-Surgery 03/05/2012 Lumpectomy (Right); Lymph Node Removal: Sentinel Lymph Node Dissection (Right)Surgery 04/16/2012 Mastectomy (Right); Lymph Node Removal: Axillary Lymph Node Dissection (Right); Prophylactic Mastectomy (Left); Reconstruction: DIEP flap (Both)Chemotherapy 06/04/2012 Cytoxan, TaxotereHormonal Therapy 10/08/2012 FemaraSurgery 11/05/2012 Reconstruction: Nipple reconstruction (Both)
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Dec 12, 2012 04:30AM 1Athena1 wrote:

Jenny - and this post of yours is fabulous! I agree with everything you say.

Anyone diagnosed with cancer should learn to have a healthy disrespect for statistics. Statistics are maths. It's the science which still eludes us.

Dx 3/2009, IDC, 3cm, Stage IIb, Grade 3, 3/8 nodes, mets, ER+/PR+, HER2-
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Dec 12, 2012 01:58PM kyliet wrote:

Jenny I can relate to having hubby ask are you on your meds, I get that too. I don't realise how irrational I have become, but everyone else sure does.

My 21yo DD was really, really angry at someone the other day. She said to her Dad, 'it was just like dealing with Mum if she doesn't take her meds."

When life gives you a 100 reasons to cry, show life you have a 1000 reasons to smile. Mulitfocal, ECE, lymph. channel invasion, Chemo. RADs. Arimidex. Monthly Zoladex.

Dx 11/11/2011, IDC, 1cm, Stage IIa, Grade 1, 3/26 nodes, ER+/PR+, HER2-
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Dec 15, 2012 05:43PM, edited Dec 15, 2012 06:26PM by 1Athena1

Ok, I finally purchased an article from Lancet Oncology - it is a review of the situation facing people with both severe mental illness and cancer. I am going to publish excerpts in a disroganized manner in case I incur any copyright violation.

This very technical medications part discusses possible interactions between cancer drugs and psychiatric drugs Bold is mine:

This bit discusses chemo drugs plus psych meds:

Some drugs used in oncology practice can interact with psychotropic drugs, resulting in adverse side-effects.47 Interactions can be pharmacodynamic (where pharmacological actions combine or oppose) or pharmacokinetic (where one drug affects the metabolism or excretion of another). Pharmacodynamic interactions can occur with cytotoxic chemotherapy drugs, which are often associated with myelosuppression and increase the risk of neutropenic sepsis, occasionally leading to death. Since neutropenic sepsis is a substantial risk for cancer patients receiving chemotherapy, care needs to be taken with any concomitant medication that affects bone-marrow function. Certain psychotropic drugs cause blood dyscrasias, such as clozapine (anti-psychotic),48 phenothiazines,49, 50 carbamazapine (aka Tegretol in the US - mood stabilizer),51 and, probably less often, mianserin52 and mirtazapine (Remeron in the US - anti-depressant).53 When these drugs (particularly clozapine) are used in conjunction with cytotoxics, profound agranulocytosis can result, with substantial risk of life-threatening infection, although some case reports have shown that clozapine was used safely and without agranulocytosis in patients receiving cancer chemotherapy.54, 55 Strategies are available to try and mitigate the risk of agranulocytosis in patients receiving clozapine and cytotoxic chemotherapy. Recombinant white-blood-cell growth factors can be used, or prophylactic antibiotics. Recombinant white-blood-cell growth factors are costly and in the UK their use as primary prophylaxis for neutropenia is restricted to chemotherapy regimens that are known to cause grade 3 or 4 neutropenia (neutrophils <1·0 at nadir of the chemotherapy cycle).56 Recombinant white-blood-cell factors can be used for secondary prophylaxis if a patient receiving cytotoxic chemotherapy has grade 3 or 4 neutropenia with a previous chemotherapy treatment cycle. Alternatively, the dose of the cytotoxic agents can be reduced for subsequent treatments.

Other pharmacodynamic interactions include potentiation of drug-induced prolongation of the QTc interval, which can in turn provoke ventricular tachycardia. This can occur when lapatininb, a tyrosine-kinase inhibitor (TKI), is used with other drugs that also prolong the QTc interval—ie, most, if not all, antipsychotics57 and tricyclic antidepressants58—and thus should be avoided when possible. If combined use cannot be avoided, close monitoring of QTc is clearly advisable. Many antiemetic drugs used in oncology (haloperidol and metoclopramide) are dopamine agonists. When used in combination with antipsychotics, acute movement disorders are more likely to result. Cyclizine and 5-hydroxytryptamine 3 receptor (5-HT3) antagonists might be preferred in such patients.

Many psychotropic drugs exert pharmacokinetic interactions by inhibiting the metabolism of chemotherapy, including clomipramine, duloxetine, haloperidol, paroxetine, sertraline, and fluoxetine, which can lead to an increased effect of chemotherapy and increased side-effects for tamoxifen, docetaxel, paclitaxel, and cyclophosphamide.59 Other psychotropic drugs, including carbamazepine and St John's Wort, increase the metabolism of chemotherapy drugs, resulting in lower blood concentrations and reduced efficacy of docetaxel, oestrogens, paclitaxel, progesterone, and cyclophosphamide.59

TKIs share metabolic routes (particularly via Cytochrome P450 3AF [CYP3A4]) with several psychotropics. Inhibitors of CYP3A4, such as fluoxetine and paroxetine, can increase plasma concentrations of TKIs, whereas carbamazepine and St John's Wort decrease plasma concentrations. TKIs can also inhibit CYP3A460 and increase concentrations of psychotropics such as fluoxetine, paroxetine, and carbamazepine.

This bit discusses Tamoxifen:

Tamoxifen, an anti-oestrogen used for prevention and treatment of oestrogen-receptor-positive breast cancer, is a prodrug that is metabolised to the active constituents endoxifen and 4-hydroxytamoxifen by cytochrome P450 2D6 (CYP2D6). Selective serotonin reuptake inhibitors (SSRIs) inhibit CYP2D6 to varying degrees, with paroxetine and fluoxetine being particularly strong inhibitors,61 leading to lower plasma concentrations of endoxifen. There is now growing evidence that paroxetine (Paxil in the US) use during tamoxifen treatment is associated with an increased risk of death from breast cancer,62 and this has prompted recommendations that clinicians should avoid prescribing strong CYP2D6-inhibiting SSRIs for women with breast cancer who receive tamoxifen.63 Patients already being treated with tamoxifen and paroxetine or fluoxetine (aka Prozac) should be prescribed an alternative drug with low potential to inhibit CPY2D6 (such as citalopram -aka Celexa, and also very close to Lexapro). However, abrupt discontinuation of paroxetine or fluoxetine should be avoided as immediate withdrawal of an effective treatment could lead to a recurrence of severe depression and severe withdrawal symptoms.

 

************

Here is the Journal reference:

Lancet Oncology, Volume 11, Issue 8, Pages 797 - 804, August 2010

Published Online: 05 July 2010

Cancer diagnosis in people with severe mental illness: practical and ethical issues

Original Text

Dr Louise M Howard MRCPsych a , Elizabeth A Barley PhD a, Elizabeth Davies FFPH b, Anne Rigg MRCP d, Heidi Lempp PhD e, Diana Rose PhD a, Prof David Taylor PhD c, Prof Graham Thornicroft PhD a

Anyone diagnosed with cancer should learn to have a healthy disrespect for statistics. Statistics are maths. It's the science which still eludes us.

Dx 3/2009, IDC, 3cm, Stage IIb, Grade 3, 3/8 nodes, mets, ER+/PR+, HER2-
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Dec 15, 2012 05:50PM, edited Dec 15, 2012 06:18PM by 1Athena1

This segment of the above article discusses the association between cancer, schizophrenia and smoking (I am not clear on whether it discusses schizophrenia specifically because the studies have been done on that illness or whether they also intend to include serious mental illness period) - Momine, this may interest you based on the discussion above (my italics):

Unfortunately, data have rarely been collected directly from patients in these studies, but it would seem that those with severe mental illness have an increased risk of lung cancer as a result of their well documented heavy smoking.8 When Catts and colleagues7 attempted to account for this behaviour, they found a much lower rate of lung cancer than might have been expected. However, two studies show the importance of taking into account historical patterns of smoking. Mortensen and Juel4 report relatively low mortality from lung cancer in men in Danish hospitals where institutional practices and close supervision resulted in limited access to tobacco. Lichtermann and colleagues9 found higher incidence of lung cancer in Finnish settings where smoking was less restricted. They also found an increased risk of pharyngeal cancer, which is associated with smoking and alcohol consumption. The higher incidence of breast cancer in women with schizophrenia might be due to the lower parity and fertility characteristic of women with psychiatric disorders.10 Some researchers have suggested that hyperprolactinaemia, which is associated with neuroleptic drugs (risperidone, another antipsychotic drug), might lead to increased breast cancer.11

Early clinical observations suggested that cancer was less common in psychiatric inpatients, and the hypothesis has persisted that some aspects of severe mental illness or its treatment might protect against cancer. The contrasting results of the Danish4 and Finnish9 studies suggest that more accurate data about smoking patterns is necessary to have confidence in the current data on lung cancer incidence in patients with schizophrenia. However, when Catts and colleagues7 considered three studies of cancer incidence in first-degree relatives of patients with schizophrenia, they found a lower than expected overall incidence of cancer in siblings (SIR 0·89, 95% CI 0·84—0·94) and in parents (0·90, 0·88—0·93).7 This finding suggests that there could be a protective genetic or disease-related effect among patients and their relatives, although lifestyle differences could still be responsible. Finally, there has been interest in the possibility that some neuroleptic medications might have an anticancer effect,12 although no direct evidence for an effect exists. Further studies that include more detailed data on risk factors and rates of cancer detection in patients with schizophrenia are needed to resolve these intriguing questions. In the meantime, incidence data suggest the need to encourage patients to take part in smoking cessation and breast screening programmes.

********

Again, article reference:

Here is the Journal reference:

Lancet Oncology, Volume 11, Issue 8, Pages 797 - 804, August 2010

Published Online: 05 July 2010

Cancer diagnosis in people with severe mental illness: practical and ethical issues

Anyone diagnosed with cancer should learn to have a healthy disrespect for statistics. Statistics are maths. It's the science which still eludes us.

Dx 3/2009, IDC, 3cm, Stage IIb, Grade 3, 3/8 nodes, mets, ER+/PR+, HER2-
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Dec 15, 2012 05:58PM 1Athena1 wrote:

....and this bit I will intersperse with my peanut gallery comments if I may - it talks about the frequency of cancer with comorbid mental illness and advocacy.

There are several publications on the implications of mental illness on cancer screening and treatment,76 including first-person narratives.77 Issues such as facilitators and barriers to screening and cancer treatment for those with a severe mental illness have been discussed; however, very few studies were from the perspective of a mental health-service user. People living with cancer, and patients living with severe mental illness have been active in advocacy, self-help, and in shaping the research agenda;78 however, activities of the two groups rarely overlap (that's why I started this thread). This lack of collective effort could be partly because the population of individuals with both conditions is small (now I REALLY feel lucky!). There might also be issues of stigma. Sontag79 argued that cancer was the unspeakable condition at the time she was writing. We suggest that severe forms of mental illness have taken over the role that Sontag identified for cancer as the ultimate personal and social threat. The current antistigma campaign in England, Time to Change, features a poster of a woman stating that people found her cancer much easier to deal with than her depression. The paucity of published work on living with both cancer and mental illness might be the result of a double stigma, but one where mental health is the dominant element. Worse, the stigma of mental illness can have deleterious effects on identification and treatment of malignant disease for those who also have a known psychiatric diagnosis.

*****

Here again, article ref:

Lancet Oncology, Volume 11, Issue 8, Pages 797 - 804, August 2010

Published Online: 05 July 2010

Cancer diagnosis in people with severe mental illness: practical and ethical issues

Anyone diagnosed with cancer should learn to have a healthy disrespect for statistics. Statistics are maths. It's the science which still eludes us.

Dx 3/2009, IDC, 3cm, Stage IIb, Grade 3, 3/8 nodes, mets, ER+/PR+, HER2-

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