Quality of Life and Longevity

Firni

Longevity without quality?

I’ve been seeing a lot of women posting about the quality of life as a BC survivor.  We are survivors from the minute we receive our diagnosis and remain so forever.

The main focus of our treatments seems to be based in longevity.  Lord knows we all want that.  The medical community also may or may not let us know what to expect from the side effects while we’re in treatment.  No where does anyone ever talk about the IMPACT all of these things have on us, our families and our quality of life.

I know women whose SOs have left because they couldn’t even deal with the diagnosis of BC.

I know women who have lost jobs because their chemo brain just couldn’t clear and they made serious mistakes.

Women have lost libdo, confidence and trust in their own bodies.  Women are expected to “deal with” the SEs of Tamoxifen and AIs because, “It will extend your life!” 

I was pretty much told,  “You have Breast Cancer.  You will need surgery, chemo and possibly rads.  But, it’s ok.  They do great things with reconstruction these days.  A little surgery, a little chemo and Bam! good as new.”

DH and I used to ride bikes a lot.  Now, with LE, I’m no longer able to do that except on really cool days.  Otherwise LE flairs up with the heat.  And yes, I wear my sleeve. 

I always felt blessed because I got a man who loves to dance.  No one told me that with foot neuropathy and a swollen foot that I would be clumsy and awkward dancing because I just don’t always know where my feet are.  Dancing has become tedious and frustrating instead of fun.

Not only have I become limited in the past time activities that we loved, so has DH.  I think it’s more difficult for DH to accept because the physical issues are not his.

As far as the wonderful reconstruction they can do…  Yes.  I had reconstruction.  Yes.  It looks nice although still a work in progress.  Do they feel the same, move the same, react the same and have the same sensations?  No.  They only look nice.   Of course, many women do not have reconstruction because they have opted not to or physically cannot be reconstructed.  It just isn’t  “Bam!  Good as new.”

I was not prepared for the “new normal”, a term used often by all people affected with any type of cancer.   The “New Normal” which includes personal, intimate, sometimes painful consequences of a cancer diagnosis and treatment is not addressed by our doctors, the chemo social workers or anyone.  Could it be that we don’t speak up enough?  Are they really not aware?  I think, in many cases,  we’re in such shock at first and then concentrate so hard to get thru treatments that we don’t even fully understand the impact on the quality of our lives and that of our families until we’re done with treatments and expect to feel normal again.

The intent of this thread is not to scare women out of getting treatment.  We need our treatments what ever those are.  Would I have gotten 6 rounds of chemo had I known of the possible impact of those treatments?  Yes.  Would other women choose differently?  Maybe.  Should that be our choice?  Absolutely.

I would like this to be a place where women can do some cathartic writing and draw strength from each other.  And maybe even be a springboard to make the medical community more aware that longevity without quality is a shallow victory.

bettysgirl

thanks for writing that! I don't know that when you are first diagnosed you WANT to hear the truth even if you say you do. Noone tells you the nerve damage is permanent. If you are ++ size that recon isn't an easy option...that regardless you won't love your body cause it just isn't the same..

Missing out on a hottub because it will case LE, pain and swelling in you arm if you do too much..

Pain in your arms, chest for long periods of time. Rads burns..Chemopause, followed by permanant 'pause, loss of libido, teeth issues after chemo, chemobrain...neuropathy... and after all the txs my energy has not returned. 1 yr later cancer is still an ever present thing and the more i look in the mirror the unhappier I get....Yes I am cancer free but am more unhappy now than I have ever been in my life. I haven't learned the majic lesson cancer was supposed to have taught me. I am just older, my face etched in harshness and am a colder, angrier person. I guess I am just a SLOW learner.

cmharris59

I, too am very upset by my quality of life since dx. I have been on disability for 2 years due to se from tx. It is pretty evident that the issues are permanent.

I am unhappy with choices for recon. I have been unable to have it yet due to radiation and CHF. I have permanent neuropathy, CHF, zero  libido, chemo brain and chemo pause. My asthma has gotten worse and I spend a lot more time in bed - more fatigued than I ever have in my life. I live alone with 5 cats and the activities that I used to love and made me content to be alone are now nonexistent.  My quality of life has me on 3 anti anxiety drugs daily, methadone and percocet daily, in addition to the asthma drugs that have increased. I need physical therapy weekly due to the neuropathy.

I was an amateur belly dancer and have been told those days are over. I was a geologist and I needed my math skills which are gone, and I used to spend 30-50% of my time on the job in the field - another something that I can no longer do. Physically, I am not worth much. Mentally, my education was wasted. Financially, I amin a downward spiral. All in all, I am devastated.

So how am I supposed to adjust to my NEW NORMAL?  I am disgusted and have many days when I wish that I had never had the tx and had just let the cancer kill me. It might have been better than this SLOW agaonizing death that I am enduring.  

I know I sound depressed and to some irrational, but my life has been destroyed.  I may lose my house,  my cars, my motorcycle (I can no longer ride it anyway),  my livelihood, everything that I have worked years to attain.  My finances are shot. What once was a great FICO score is now that of a deadbeat.  I have had to fight non stop for my disabilty and my health insurance.  It is as though they think that this is the life I wanted. 

I never married, never had kids, and have always been independent.  Now I find myself dependent on everyone even total strangers to just help me get thru the day if I venture outside of the house. That alone is difficult since emotionally, I have recurring panic attacks that are manic in manifestation. They can last for days not minutes.

  Can I just say that cancer sux, but so does life after the life saving tx.  Was it worth it?  Ask me again in 5 years.  I doubt my answer will have changed much.

Mizsissy2

Firni, thanx for raising this important issue.  I think this should be a new focus of research in the medical community.  The prevailing medical ethic just seems to be to keep life going at all costs, whether those costs are to patients or loved ones.

 

Not only does breast cancer treatment have effects which result in body disfigurement, premature menopause, permanent brain damage, but it affects marriages (some break up during treatment) and the children of breast cancer patients who are extremely sensitive to their mother's problems and state of mental health.  I know of many instances where women have been abandoned by their husbands during treatment, and children are left to grow up in broken homes, cared for by mothers who are ill.  

 

This is just the tip of the iceberg...there is so much to talk about here.  I think you found a good place for the topic...another possibility would be to put it under the heading of BC research.

 

Miz 

Texas357

Thanks for starting this Firni. I was so used to being the healthy one in my family, plus being the active "health nut" -- I was determined that I was NOT going to get a chronic illness because I was doing everything right. So I was very P.O.'d to get breast cancer, and even more so to discover that my life would be forever changed -- despite those who swore otherwise.

My skin looks 10 years older, my sexuality has suffered, my stamina hasn't recovered, my nails keep falling off (they're now going for the 3rd time!) and now I've got an arm I need to baby. Ironically, the least of my frustrations has been the lost breast/reconstruction. THAT part is what I figured from the beginning I would have to deal with. In fact, I knew from the beginning that I wanted reconstruction because I didn't want to think about BC every day. I wanted a breast where I'd always had a breast. End of story.

The rest of these pesky and annoying side effects just snuck up on me.

But I refuse to allow this disease to claim the inner core of who I am. And I realized today as I was leafing through an old magazine in a doctor's office, looking at all the pictures of women in their pretty clothes enjoying everyday things, that I'd lost touch with my femininity and what it was like to feel playful and have fun.

Okay -- I'll add that to the list of things to work on. You know what they say: "Keep acting as if it's real, until it's real." Well, I'm going to start trying act as I did before cancer, trying to regain how it felt, and I firmly believe that some if that spirit will come back to me.

This disease has defined me for almost 9 months. No more. I am a wife, a daughter, sister, friend, co-worker, neighbor. I am an animal rescuer, a lover of chick flicks and chocolate, an avid reader of mysteries, and a nature lover. (And shhhh, I still intend to enjoy a glass of champagne now and then.)

I'm adding BC to my list. It's not my "cause" that I'll rally around -- in fact I'll probably lay low next October during Breast Cancer Awareness Month.  It's simply something that's made me more aware that every day is precious, that I am not in complete control over my destiny, and that I've got to take time each and every day to appreciate all that I do have.

(But I still reserve the right to bitch and moan now and then!!!!)

bettysgirl

i guess sometimes i feel guilty that i do feel this way when i see women out there who have been able to bounce back after dx and seem to have made a peace with it. OR maybe they just have  a braver face than i do. I hate what BC has done to me. I HATE that it took and continues to take so many options out of play for me. I also wonder as the post above what would have happend if i just kept ignoring the growing spot and let whatever be what it decided to be. MAYBE by some small miracle one day I will feel like this was a "doable" journey and life will return to be somewhat happy again. Right now i do not see that day coming. In fact as the days and months go by it gets worse that it does when i was having txs...at least then you had a reason to look and feel like total crap...NOW everybody expects you to be your old perky self. They don't realize that for me another little part of me has died. If I die I die but i hate feeling the way i feel, taking all the pills i have to take to make it through a day and you KNOW if you talk to a doc about thoughts like this they will surely suggest another car to add to the pharmaceutical express...

Firni

Some women don't have lingering affects.  They have strong family support, they breeze thru surgeries and chemo and just move on after all is said and done never looking back.  Not everyone is so lucky.  It's very hard to accept the changes.  It's hard to find new things to enjoy knowing they won't really replace the things you used to love doing and no longer can.  Sometimes I just think of people a lot worse off than me.  People with broken backs and necks confined to wheelchairs unable to even feed themselves.  People who have lost limbs.  I try to imagine their new normal and I don't feel so bad.  I have plenty of pity parties for myself.  But, like Texas, I refuse to let this cancer continue to control my ability to feel joy about something.

bettysgirl, I know what you mean about the pharmaceutical express.  But I did tell my PCP that I was depressed and he did Rx an anti depressant.  And I do feel more positive.   I don't like taking the pills, but I hated hating myself and my life even more.  Besides, the anti-depressant helps with the Tamoxifen hot flashes from hell.

Texas, I don't want to be involved with Oct. either.  No one understands that.  They think I should be volunteering and marching and crying and screaming Warriors live on TV or something.   Just not feeling that.

mke

Really good points Firni.

I've had to face some hard truths and I do not like them.  My feet are numb and they are never going to get any better.  I have no balance, I won't ever have balance again, I don't dare dance.  My hands are numb, if it gets any worse I will have to give up crossword puzzles and what will I do with my Sunday afternoons?  I certainly can't write a note in a sympathy card without the recepient thinking I must have some palsy.  I have the stamina of a 10 day old kitten.  Should I get down on my knees to clean around the toilet, it is going to take some doing to get up again.

But, I'd probably do all the same stuff again because I wanted my best chance to live.

Texas357

It's okay to get angry. That's part of the healing process. My hands are starting to hurt from the Femara, and last night I discovered I can't help my husband do the raking any longer. Yes, I am upset by that. Remember: we didn't do anything to get this disease but we DID take action to live through it. We've fought too hard to give up now.

I saw something the other day that I think applies. I'm paraphrasing but it said, "I don't mind my scars because without them, I wouldn't be here."

We don't have to be heros like Helen Keller or Christopher Reeve, but we do owe it to ourselves to push ourselves to be the best we can be with what we've got.

Bettysgirl: have you spoken with your oncologist about how you're feeling?

bettysgirl

all this has reared it's ugly head only recently. I think that it is problably all the anniversiaries as d was june , snb and mx in July and this past monday was the 12th anniversary of my mom's death. It has been rough at work, rough at home and the stress levels are out of the roof....I go this week for a port flush and my next follow up with the onco is sept....I have always just needed some time to be quiet and work through stuff like this but with the grandbabies living  in the house quiet is a very scarce thing....it will pass i am sure. I just have to come to terms with some stuff. He does know however that i am a skeptic when it somes to research, and he knows i don't like all the meds and he knows that i hate the flashes and he also knows i am not a weeper. I just DON'T cry. Never have been one don't intend to start now. I tend to turn everything inward. BUT if it continues to a point where I don' think i can handle things anymore i will let him know. Not being happy in my skin came long before BC it's just that the BC made it worse.

Mizsissy2

I'm concerned about the alcohol studies.  They are so *NEW*...wasn't it just not too long ago that we were told that wine was GOOD for you.  And now it's bad?   I think behind all this research there is some kind of Protestant ethic that whatever you enjoy must inherently be bad.  The good life is the suffering, tortured life.  No pain no gain.  You *must* suffer to gain, you must have chemo, you must stop having sex (Geez isn't sex nothing but sin anyway!!)... I'm skeptical about these new studies...don't know what to think.  There were some very alarming studies about a year ago that many of the chemos were ineffective (particularly adriamycin) but the doctors paid no attention.  They just kept on giving new cancer patients adriamycin despite the heart risks.   What does this tell you? 

Texas357

Small amounts of wine and to some extent beer has been shown to have cardiovascular benefits. So does dark chocolate but it's not good for diabetics. I don't think the news about alcohol and BC is all that unusual.

Speaking of quality of life, I'm getting progressively achier from the Femara. So far, Advil keeps me going okay but I'm concerned about it getting to the point where I have to consider doing something different. I'd planned on splitting the next 5 years between Tamoxifen and aromatase inhibitors because I am concerned about the long term effects of complete estrogen removal from my body.

More than anything, I don't want to regret stopping the AI because of the pains  and then getting a recurrence. I sure wish the future didn't seem like such a roll of the dice.

mom2two

When I was first diagnosed with breast cancer I spent hours upon hours trying to research every aspect of this disease and its treatment options. One article in particular hit home hard. It was the history of breast cancer treatments throughout the decades. Beginning with the first surgical patient given a mastectomy (no anesthesia) and her beloved dog by her side as the surgery was performed (ie infection guaranteed). From there it went to whatever the going thought was: surgery alone, large doses of radiation, chemo alone, chemo and radiation combo, lumpectomy alone, lumpectomy with radiation etc. The treatment was given and the doctors could only watch and see what the results would be. If it didn't work something else would be tried. It made me understand more that its not a "them" against "us" kind of thing. The medical world doesn't have "the answer" for breast cancer so for now they can only tell us what they think will help and if you read the history what we have today to help fight bc is much improved from what our sisters of yesterday had to endure. Hopefully what we endure today our sisters of tomorrow will be spared with something better. For now the researchers will be watching the trends of our results and tomorrows treatments will be developed upon that trend.....and on it goes.

ktym

Mizsissy, I'm with you, skeptical of anything that smacks too much of if its women having fun we must make them feel guilty about it.  Much easier to tell us if we recur it's because we drank alcohol and didn't get enough aerobic exercise each week, or ate inorganic grapes, then it is to admit the treatments weren't good enough.  

I wasn't excited about the SE's I was told to expect while going through chemo, really wish I had known how the next several months off of it would be.   I always thought you'd have to give me a large absolute benefit to get me to take chemo.  Then I got cancer and that number shrank when I was really facing my recurrence risk and mortality.  Have to say, my original estimate was probably better.  When I weigh in the continued fatigue, neuropathy, lymphedema, effect on my career, how many months they estimate for me to recover based on how bad my neuropathy is...   I have a wonderful family so maybe I'd make the same choices again I want to spend so many years with them,...but I don't know, don't think I could take chemo again if I recur.  Not knowing what I do now. 

I like exercising anyway, so plan on doing a lot more of it.  Never liked meat, so getting in all those fruits and vegetables is easy.  Love green tea, especially iced, so I'll drink buckets of it. But, refuse to give up sex and alcohol.  I don't need a lot of it (alcohol that is) but I enjoy both and took the stupid chemo and am putting up with the stupid tamox to have years left to do both.  If some of the decisions about how I exercise or what I eat or drink are making that much of a difference and shortening my life that drastically...sure wish someone had told me because I would have kept on with the fun and skipped the lousy chemo. 

Mizsissy2

For those of you who don't read the mojo thread, I will summarize what I've been posting over there on the recent alcohol research.  It has been widely reported in the media that for every alcoholic drink a woman drinks, that she is increasing her risk of recurrence by 11%  When I went to the original research as reported in JNCI (the Journal of the National Cancer Institute in Britain), it was:

 

Each additional alcoholic drink regularly consumed per day was associated with 11 additional breast cancers per 1000 women up to age 75.

 

How do they get 11% from 11 out of 1000?  11% percent would be 11 out of 100.  Looks more like 1.1% to me. Also, when you take about risk rates, you are talking about occurrence over time, and the authors do not adequately describe their time frame.

 

I have also looked around and found at least one example of research that contradicts the Naomi Allen study, for example, this is a direct quote from an article called "Alcohol Consumption and Breast Cancer Risk in the Women's Health Study" by Zhang et al. in the American Journal of Epidemiology 2007.

 

Higher alcohol consumption wasassociated with a modest increase in breast cancer risk [emphasis mine] ; the multivariable relative risks for 30 g/day of alcohol vs. none were 1.32 (95% confidence interval (CI): 0.96, 1.82) for total breast cancer and 1.43 (95% CI: 1.02, 2.02) for invasive breast cancer.  

 

This would seem to corroborate the idea that that Allen, or at least the media people quoting her, have miscalculated the risk by a POWER of ten.  Also, when I read the original article, I found that they had eliminated all women with a prior cancer dx from the study, so there this data was based entirely on new cases of BC.  Perhaps there are some other studies out there that are a little more concrete in their findings, but the data from the Allen study are very ambiguous.

 

The overall point I am trying to make is that I don't think enough research on BC is being directed in the area of humane treatments vs. medieval, ridiculous and just plain silly treatments.  This latest research on alcohol really bugs me because damn it...I enjoy that glass of wine at the end of the day and I look forward to it, and I am going on a vacation this summer in Quebec where wine is regulary drunk with meals and I want to ENJOY it.

ktym

OK Mizsissy, had to go back and find this from where I posted before on the mojo thread:

Sorry guys, my browser is annoying right now. Not sure if the link will work. Anyway it is a publication on line ahead of print from 6-2-09. I'll paste in the whole abstract

1: Alcohol Alcohol. 2009 Jun 2. [Epub ahead of print] Links

Cancer Incidence among Patients with Alcohol Use Disorders--Long-Term Follow-Up.Thygesen LC, Mikkelsen P, Andersen TV, Tønnesen H, Juel K, Becker U, Grønbæk M. National Institute of Public Health, University of Southern Denmark, Copenhagen, Denmark.AIMS: The aim of this study was to compare the cancer morbidity in a large cohort of patients with alcohol use disorders in the general Danish population. METHODS: We included 15,258 men and 3552 women free of cancer when attending the Copenhagen Outpatient Clinic for Alcoholics in the period from 1954 to 1992. The cancer incidence until 1999 of the patients and the general Danish population was obtained through linkage with the Danish Cancer Registry. The incidence rates were standardized (SIR) according to sex, age and calendar time. RESULTS: A total of 2145 men developed cancer compared to 1140.8 expected cases (SIR = 1.9; 95% confidence interval (CI) 1.8-2.0), while 601 women developed cancer compared to 239.1 expected cases (SIR = 2.5; 95% CI 2.3-2.7). Highly significant and strongly elevated incidence rates were found for cancer of the tongue, mouth, pharynx, oesophagus, liver, larynx and lung. A higher incidence rate was seen for renal cancer for both men (1.4; 1.1-1.8) and women (2.1; 1.0-3.8). The incidence of breast cancer in women was non-significantly elevated, but significantly elevated incidence rate was found for cervical cancer (1.8; 1.2-2.6). We did not observe increased incidence of colon, rectal or urinary bladder cancer. CONCLUSIONS: In conclusion, this study confirms the well-established association between high alcohol intake and cancer of the upper digestive tract and liver. In addition, the results indicate a significantly elevated occurrence of renal cancer, but not of breast cancer and colorectal cancer, in patients with alcohol use disorders.

Mizsissy2

W O W !

 

Even women who are alcoholics DO NOT have a higher incidence of BC?!!!  Veddy veddy interesting!!!

 

Maybe I can enjoy my Quebec vacation after all!!! 

 

Thank you Kmmmd....you just saved my summer!

 

lovemyfamilysomuch

Hello my dear friend Firni!

You are the one who helped me get through chemo.  I had such a horrible reaction that I felt like dying.  Firni and others supported me through it.  Now I done with chemo and rads and am deciding whether or not to do arimedex.  I am so much stronger that I was this past winter, but still feel the lingering effects of it all, and feel so connected reading all of your posts.  Thank you.\

Ellen

Firni

Ellen, It's so good to hear from you!!!! I'm so happy you got thru the chemo and rads.   And that you are feeling stronger as time goes by.  You had a pretty rough time.  A lot of us are still feeling the effects too.  I would say give the Arimedex a try.  Some women don't have bad SEs.  If you do, tell onc you need to try something else.  I'm taking Tamoxifen now even tho onc wanted me on Femara.  I just don't want to eliminate all the estrogen from my body.  I'm not having any problems with the Tamoxifen.  Well, ok.  Some hot flashes.  But we're working on those.  Keep in touch.  It's just so good to hear that you've reached some light at the end of that long dark tunnel of last winter.

SoCalLisa

I am a long term survivor..now almost nine years...it would be nice to have been given the foresight to  know just what my permanent side effects of treatments would be...my liver was fried during treatment...and now I am a breast cancer survivor with severe liver disease and neuropathy..and others from the five years on tamoxifen and arimidex.

If only I had known..but now I can't dwell on that and be a Monday morning quarterback..my new normal is very different from what I had envisioned..but I am alive...and the quality sometimes is

not good...who knew??

Mizsissy2

As someone said to me, it's all a matter of choices, we had choices to make, but did we really have the best choices?  I think research should focus on better choices, like for example, the oncotype test.  That genomic project was focused on helping to identify women that would benefit little from chemo to spare them the ordeal.

 

I think we need to have an area or a focus of research that is more oriented to solutions that do not destroy quality of life, like treatments that do not kill good cells, that do not destroy the functioning of our sex organs, that allow us to enjoy the same things that other people enjoy.  And I think it is possible.  If you do not define the problem adequately there will be no solution.

 

Ellen, on the question of Arimidex:  I did a good deal of research on this a couple of years ago when I had a decision to make.  I read the research and questioned women who were on the AIs.  Femara seemed to have significantly few side effects than Arimidex.  The worst SEs--apart from hot flashes--are the bone problems.  I had lots of aches in my bones, but these disappeared once I began a regieme of supplemental Vitamin D, calcium, and glucosamine-chondroitin.

 

anne26

I am abreast cancer nurse and I have breast cancer. I understand your frustration with lack of support and lack of truth about how this affects your whole life. I thought I was giving patients support. understanding what they were going through. I was so wrong. this whole experience as shown me where we are missing so much that patients need. I have been go lucky that I did not have to chemo or RT. only surgery and AI. I did not appreicate how many SE come with a simple pill. I hope that when I return to work, I will be able to help patients with this overwhelming change in their life. I am struggling to find some peace, I have been lucky that my onc is very holisic and understands how this disease changes your whole life and how you deal with other and yourself.  please continue to look for for a balance and surround yourself with people who understand. anne

ktym

Anne, don't say only surgery and an AI.  I swear only a breast cancer survivor would say that.  We know what else is there so we minimize what we go through sometimes.  That is still a load. Very good advice for everyone in your post.  Cyber hugs to you today.

ktym

Mizsissy this one is for you:

Breast Cancer Res Treat. 2009 Jul 12. [Epub ahead of print] Links

Low level alcohol intake, cigarette smoking and risk of breast cancer in Asian-American women.

Brown LM, Gridley G, Wu AH, Falk RT, Hauptmann M, Kolonel LN, West DW, Nomura AM, Pike MC, Hoover RN, Ziegler RG.

Division of Cancer Epidemiology and Genetics, National Cancer Institute, Bethesda, MD, USA, lindabrown@rti.org.

Studies have shown that breast cancer incidence rates among Asian migrants to the United States approach US incidence rates over several generations, implicating potentially modifiable exposures such as moderate alcohol use that has been linked to excess breast cancer risk in other populations. The goal of this study was to investigate the effect of alcohol intake, primarily low levels, on breast cancer risk in Asian-American women and explore whether smoking and alcohol contributed to the breast cancer incidence rates observed among Asian migrants to the United States. Study subjects in this population-based case-control study included 597 incident cases of breast cancer of Chinese, Japanese, and Filipino ethnicity living in San Francisco-Oakland, Los Angeles, and Oahu, Hawaii, and 966 population controls frequency matched on age, ethnicity, and area of residence. The fraction of smokers and drinkers was significantly higher in women born in Western compared with Eastern countries. However, breast cancer risk was not significantly associated with smoking (odds ratio (OR) = 1.2, 95% confidence interval (95% CI) = 0.9-1.6) or alcohol drinking (OR = 0.9, 95% CI = 0.7-1.1) in this population of low consumers of alcohol (median intake among drinkers in grams per day was 0.48 for cases and 0.40 for controls). These data suggest that low alcohol intake is not related to increased breast cancer risk in Asian-American women and that neither alcohol nor cigarette use contributed to the elevated risks in Asian-American women associated with migration patterns and Westernization.

Texas357

I met with my BS yesterday about a prophylactic mastectomy. Next stop is the PS. I'm not looking forward to the drains but I'm hoping for some more peace of mind.

Mizsissy2

Kmmd, Thank YOU *VERY MUCH*        !!!!!

 

I am on a train in Quebec right now, WiFi is absurdly slow, but somehow I made it here today to receive such good news.  After reading the original research by Naomi * et al, and seeing the errors in her article, I sent a copy of the original journal article to my MD, who concurs with me that a mistake was made in generating the statistical odds by a POWER of ten.  This *mistake* has been corroborated by at least two other research articles that have been cited to me by my husband and women here....THIS IS HOW A FORUM WORKS.

 

Let me tell you that I just enjoyed a glass a wine with lunch on the train!!   I also made a visit to St. Joseph's Oratory this AM, the site of many pilgrimages in North America, and I prayed for my friends who have cancer.

 

I think this is thread where we need to be bold and daring, as bold and daring as Mena was, in addressing issues of quality of life, not just our sex lives, but our lives with chemo, prophylactic chemos, chemo during mets, and mets during endstage.  Many things about this disease and dealing with it, and even dealing with death from it are whispered and not spoken.  These things need to spoken and understood.

 

This should be a place where we can ask difficult questions and get answers, where we are not afraid.  If we don't ask for the answers, NO ONE ELSE WILL!  So ask your questions, deal with those difficult subjects, that's why we are here.

 

Thank you Firni for starting this thread.

 

XXXXOOOO 

ktym

well said, wishing you the best on your trip

EWB

I have been and continue to be frustrated.....yes I was "lucky" and have not had surgery, radiation or chemo but only because I was stage 4 at my intial dx. Those treatments are being saved for "some day". The little pill (for me Femara) and a shot of Lupron have kept the cancer stable for the past 2 1/2 years and for that I am extremely thankful. My frustration is that so many seem to wave a hand and pooh pooh or dismiss the SEs that I am not suppose to be having! I was not prepared ... no one told me the extent of the joint, bone and muscle pain, the fatigue, the loss of concentration and words and what the heck am I doing in the kitchen moments I have on a regular basis. No, they said it will be like menopause and you'll adjust.

I don't think the onc or nurses or social workers have a clue what its like --- I have been fortunate that mine are supportive and helpful and try but they do not have a clue. Where is the support for this new " we can manage this like a CHRONIC illness" cancer thing they are throwing around?

Sure this may be better than chemo but it is no walk in the park.  I apologize for this next part...I am not looking at doing this for 2-5 years and being done with it....I am looking, and god help me -- praying, that this will work for years and years.  Each morning I get up and put the pill in my mouth knowing what it will do. Just change to another they all say...with the wave of a hand, oh of course, I say...I never thought of that -- duh. Like I've never thought of that. There is no guarentee that another will work as well or that it won't have the same SEs. Since this is forever for me (and others) I want to get every last second I can from each drug becuse some day I might run out of options.....

lovinmomma

EWB...

I so completely agree with you. i am on the little pill also, and my brain is gone. I did not realize bone/joint pain could hurt so badly. This is my life also and I need every day out of every treatment that I can.

mason204

EWB - well said!

EWB

Oh thank you- I was feeling so alone about this and am so relieved that Its not just me.