Not Buying Into It
Comments
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Pompeed
Nothing but big hugs, lots of understanding, and again the question, how can we help?
You are indeed at the absolute "worst" part of the breast cancer journey at this point--while you may not realize it, we have all been there, some of us recently, some of us a bit longer ago, but we hear you, and while we may feel helpless as to who we can help, we are here for you!!
Please rant, rave, spit, curse--we do understand!! We have all been there!
I only hope you can receive hope and comfort from us, those ladies who who been "through the mill" and come out on the other side, enjoying our children, grandchildren, lives, and having hopes for many more years of this!
Even thought that inbetween times sucks--chemo sucks--rads such--reconstruction sucks--but hey! Look at how many of us have made it through in one piece and continue to enjoy life!!
Hugs to you my dear--let us know how we can help, in any way possible!
The whole BC thing sucks from start to finish but you know what? Those are the cards we have been deal, so lets make as much lemonaide out of the lemons as possible!
And as it I think it was Fitztwins who said, stuff your bra with the leftover rinds!!
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Pompeed, in your very first post you said ...
There's treatment and from what I've read in the last hour or so, after the treatment there's all of the permanent side effects of the treatment. Some of which are very likely worse than the disease. Pointless. Just pointless. False hope is a very dangerous thing.
Then in another post you said ...
I've said nothing about anyone's personal choice. Nor have I suggested that some choices are "wrong" and some are "right."
To me, what you said in your very first post was a judgement that those of us that have made the choice to follow certain treatment paths which may come with some permanent side effects were making a choice that YOU feel is pointless. You said it yourself ... POINTLESS. JUST POINTLESS. FALSE HOPE IS A VERY DANGEROUS THING.
So, some feel you just need to vent. Fine. Then I need to vent too!
I'm not a "regular" on this board. As I said, I joined after my diagnosis and started reading and freaked out a bit so I decided that I should just put my trust in my treatment team and seek the advice of some very close friends. I thought maybe that's what you were feeling too when I first read your post. That's why I responded as I did.
I just showed up out of nowhere when I first posted. Just like you. Unlike you, I was not referred to this site from one of the founders. My first post was to ask for input because I was considering stopping the round of chemo I've been going through. I went through four months of chemo before having a double mastectomy. I then went though 7 weeks of radiation and this last round of chemo included 12 infusions. I've had plenty of bad days. Some REALLY bad days. I have worked through all of this because I can not afford to lose my job and my insurance. I am the primary support for my family.
I've been going through treatment for almost a year now. It's not an easy path to choose, but it was the one that I felt gave me the best chance to live. I want to live. Your posts in this thread have seemed judgemental to me. Your posts have sounded like you were saying all that I and others have done to try and fight this disease was Pointless ... we're going to end up with more problems from the treatments that might even be worse than the cancer itself. We are just holding onto FALSE HOPE.
Can't you see how that could make some of us feel?
If you don't think treatment is the right thing for you, fine. Do what you think is best for you.
To rephrase your own words ...
My best hope for you is that you never be made to feel, at the hands of a complete stranger, that you've made the most pointless choices and are only holding onto false hope.
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Hi Pompeed
This board did not exist at my first go around with this beast. It was certainly shocking, the tests were not any fun at all, the biopsy was terriying and the surgery was awful - there was no reconstruction due to the complications I had - this is not to say you would have them. Chemo was a bear, I elected not to do the rads and did the Tamoxifin for only 1/2 of the time due to other issues. I lived through it. I learned to accept my external prosthetic and I spent 10 years living my life. It sucked but I got through it. I did accept medication for the anxiety and it was enough to keep the edge away. There was nothing pointless about any of it - I was in 'no evidence of disease' for 10 years. 10 years I likely would not have had doing nothing. I would like to help you see what lies beyond what you are presently experiencing. Short term pain for long term gain. While there is no 'cure', there is treatment and life without the disease - many live an entire normal lifetime without a recurrence.
It can come back - it has for me. Oddly, it is only in my bones and if it had to come back, it is the best possible place for it to do so. There is no organ or lymph node involvement so once again, I am treating. Not chemo but homonally and after a year, I am still here, feeling pretty good and still doing some very kind treatments once a month. I was more impacted with depression this time around so I am 'living better through pharmacueticals', I am working, taking care of my home, gardening, traveling, dating, and adjusting to some minor limitations. I do not wake each day and concern myself with my disease but instead, seek the joys and wonder all around me.
I did get my affairs in order - only so I would not have to stress about it and could put that behind me - I could get run over by a bus tomorrow or I could celebrate 10 or 20 more years living with cancer.
You are in control. Keep that in mind when considering treatment. I watched my father die from cancer during the time I was going through chemo. He died, I lived. Each and every person that ends up with this disease does through no fault of their own. It does not care who it picks - it just does. Now that it has touched you, it is up to you and you alone what you do. I did the chemo but refused the rads. Did that cause my recurrence? Likely not. You do not have to do everything they suggest. If you don't like a treatment teams course, find another - keep looking until you find a place that is more aligned with what you want.
On the reconstruction - I just had mine done after years of being told I would have to endure 3 surgeries and more scars from my back. It ended up, a brand new plastic surgeon to me had another idea and I liked it. A small implant for the missing breast and a reduction from a D to a B and quite frankly, I love it. My shirt buttons and my shoulders love me and I can shop at Victoria Secret!
I did not experiencing any weight gain either time during treatments.
Please keep in mind, the folks that come here are experiencing issues and looking for solutions so you will see all the possible problems that can occur - this does not mean everyone has them. I sense you are very angry that this has happened to you and totally justified! We all are and depressed and not happy that we got 'picked' but I, personally, have to play out these cards I was dealt, like it or not and I will NOT become a victum of this disease but rather a cancer patient who is living with the beast - accent on the word LIVING.
Sending you a hug...LowRider
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Pompeed- I hope that you dont feel like you are being picked on, we only care about you, we are not trying to persuade you one way or the other of what to do, there are a lot of ladies here who have either opted out of tx or not done any thing at all, I think our point was not to make us feel like we are doing it all wrong, I went to the dr today for some problems and being sent for a mri i told him i was almost afraid to find out anything i keep losing body parts and i will jsut be a stub walking around, just kidding of course, if there is anything else going on with me i will do what ever it takes, on another note, my uncle and 2 other men in his computer office got esphagus (sp) cancer my uncle decided to go the holistic route and the other 2 did the chemo and what ever there tx was, my uncle passed away with in a year of his dx and the other 2 men are in remission, not saying that every time you will be healed but who knows if my uncle had done tx would he still be alive, we will never know, i hope you know we just want to help you in anyway and what ever you decide is your descion and no one will judge you. Hugs,
DEbbie
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Hi Pompeed-
I can totally relate to much of what you are saying and I pretty much feel the same way. I feel like I got on the breast cancer train and after I realized where it was heading, I decided to jump off. My early stage cancer was found by mammograms (I never felt anything) which led to biopsy and surgery to remove my breasts. I know that I have been traumatized from this because I don't plan to ever go to a doctor again. They wanted me to do a blood test and chest xray as a follow up to my treatment. I figure that I have been treated enough and I am done. My life was much happier before all of this happened and I personally believe that if the surgery did add any years to my life it was offset by the stress, depression and anger which I am sure has taken years off of my life.
I admire the strength of the women on this board that fight so hard and suffer thru all of the treatments that are prescribed for them. I just know that it is not for me. If I am sticking my head in the sand, so be it. I just know that I don't want to be poked or tested ever again. I hate all of the "pink" bullcrap and it makes me sad because I don't feel like I am part of the "sisterhood". At first I embraced the pink but now I feel like a black sheep because I am so anti-medical, anti-mammogram, etc. I just seem to see things so differently than the majority of women. I feel sort of lonely in my beliefs.
I just wanted you to know that I understand what you are saying and that you are not alone. Good luck to you, whatever you decide to do. You will be in my thoughts.
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wishing you peace Pompeed. Hopefully things will look up for you.
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baywatcher you are a cister in my book. Just because you have limited your treatment doesn't mean your are not one of us. You know what you can and can't do. It is your life and no one should judge you for the choices you have made when it comes to cancer treatment.
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This thread is beginning to sound more like a group therapy session than anything else - I find that refreshing. We need some more introspection on BCO.
Baywatcher - you are not alone. I, too, have circumstances and took paths that make me feel as though I have little in common with other bc people, though they are different from yours. Ultimately, we humans don't change; only our feelings do. We come to cancer as we are, with our prejudices, pre-existing conditions and beliefs and hopes and strengths. And we die that way.
We all seem to see this beast so differently, even though there certainly is a broad swatch of consensus (and it can seem oppressive at times). And those of us who do not share the consensus can feel lonely. Nice to know there are many of us "lonely" people here, many posting on this thread. Even if we do not see eye to eye with Pompeed on some issues, we welcome the refreshing difference in her post.
What always astonishes me is not how much changes but how little does. I just hope that cancer brought out some of the good in me along with whatever else. I found freedom and felt galvanized and energized when I was diagnosed. I had the power to make life-and-death decisions based on my principles. How often does one get the luxury of doing that in life? Usually it is: this little black dress or that one. I hate doldrums; I hate pussyfooting and fear, and I embraced the challenge. I also insist on being called a patient and not a "warrior" or a "survivor" - I have no time for play-acting.
I was sick of feeling powerless, of having no decision-making power, and even a chance to weigh in on a deadly wager was welcome at that time in my life. Cancer took and gave to me at the same time. I don't expect anybody to understand. It is just refreshing to be able to express this, here, right now, without fear of the consensus-enforcers, who have probably had their attacks of shock at anything different on page one of this thread and died and left us all alone, thanks to Pompeed's welcome foray.
I don't know how to help you, Pompeed, but I think you have unwittingly helped me and for that I thank you.
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baywatcher--- I don't like all the pink bullcrap either. Nor do I feel like a true "sister" much of the time, since I don't buy in to so much of the October rah rah pink parade.
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Pompeed,
The stress that comes with a cancer diagnosis is unreal. I believe that every lady on this board cares what happens to you, I know I do. No one is trying to pick on you, I can see nowhere that you were expected to sit in a corner or that you are judged unfairly. You are seeing things in our writings that are not there. New people come here everyday and are welcomed with open arms. I am very sorry that you feel rejected by myself or any of these wonderful ladies but no one is rejecting you. Maybe we didnt respond as you expected and it made you defensive...I dont know. When someone posts here its usually to get others opinions to help make decisions etc. We were just following our normal protocol. Part of my normal protocol is to share my story and give that very real hope. Aromasin has saved my life and I think thats worth sharing with you. I'm walking talking proof that these drugs can give us life where once there was no hope. What kind of people would we be if we sat back and said " oh cool...I agree you should just wait to die cause the treatments are pointless and will only make you sicker than when you started."...??? That would kind of make having this site pointless if that were true. I truly care about each member of this site...even if they dont like me. I hope you will read back over these posts and realize you have made an awful mistake by misjudging all those who had come to your aid. Goodbye...Mazy
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Funny but I have this pink shirt I won't wear anymore because it's Komen pink. I'm tired of the pink stuff too yet I'm only 4 months from initial diagnosis.
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Pompeed, I think we all feel anger at different stages, and about different things. Personally, I was angry I had to work full time and angry that I had to go it alone (all my treatments, appointments, etc). You have every right to feel as you do. But I hope things get better for you - things will slow down and resume some sense of normalcy, I promise.
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Ladies-
Oh please please choose kindness..
What one feels now can be entirely different in a week or a year. Sometimes, that's all a gal in pain (spiritual, emotional or physical) needs to know.
Let it be.
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Sherrie:
Many thanks.
I opened the topic thinking that reading the notes would help me figure out how to choose treatment options. Obviously, the process of "getting through" treatment comes later. But one has to choose first.
By the time I got through the notes, it seemed to me that deciding on treatment beyond what I've done so far, based upon what others were saying about their experiences with various options of treatment they have chosen, which have also been presented to me, would not make my life better.
There is support here. Clearly, there are very generous, thoughful and sympathetic people who give of their time and their thoughts. I did the same years ago when I was so ill and from my own experience, became an "expert" about that illness.
But it really comes down to exactly what you've said: the decisions are all individual and I see that process as one for which there is no "help" in the sense of sharing a burden and everyone carrying part of it to accomplish a particular result. It's a burden which has to be assessed and lifted and carried all alone.
And why wash the dishes and clean up the mess and all of that? Because we know the outcome and have control over it. We know that washing the dishes makes for a healthier and a more civilized environment.
A short tale: In the spring of '09, I finally had to give in to having surgery on my knee. No way around it: I realized while in Paris the previous fall that I did not go there in order to spend time in my hotel room with my leg up on a pillow and ice on my knee. I went to Paris to be able to enjoy my time there without pain. I was wasting some of my time in Paris taking care of a knee which i should have let the surgeon fix a year earlier. So a new knee was the ONLY solution to that never happening again and a new joint a complete cure for osteoarthritis of the joint.
How to get a new knee? Easy: see the surgeon, get the book, read it, start at the beginning, get a date, do the exercises for at least 90 days before that date and do them because they are determinative of the outcome, sort out post op rehab and so on. And what's in the book: this is what will happen to you the day of the surgery; this happens on Day Two, this happens on Day Four; this is where you should be at Week Two and Week Four and Week Six and 90 days post op. Etc.
Was four months of PT hell? Sure was. FAR WORSE than the surgery itself. but I knew that if I did the PT work, I controlled the outcome. The sucess of the surgery was more in my hands than in the surgeon's.
So I wash the dishes and take a shower and clean my horse's stall because I know what the result will be: better. Absolutely better than not doing these things. Perfect? No. Of course not: no guarantees. But certainly better and a very high probability of being substantially better.
With the breast cancer, I'm in the middle of a crap game, I am blindfolded, I am given statistics and probabilities like the game of baseball and I have no control over the end result at all. It seems all guess work. Do this and X might be the result. Do that and Y might get that result. Do something else and it's equally vague as to the consequences.
I'm right with you: life is ultimately fatal. So it's what I do with my time that's important. And right now, I do not see that spending my time with the white coats, who can't even decide amongst themselves what's the optimal course of action, and their needles and tubes and knives and drugs and ray guns and pills isn't a way to just waste whatever time is left rather than use it to do some valuable things. It's an existential question.
Thanks for taking time to write a note to me.
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Bec:
I read your note and I now understand. You are right.
I should have written what I was thinking -- pointless for me -- so the qualification was clear. False hope and airy fairy thinking do not work for me.
And I should have proof read my note before putting it up to make sure my comments reflected my views only.
You are right. Thank you.
Apologies.
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And thanks to Jane & Low Rider & Debbie & Bay Watcher & Athena & Lago & Fearless & Mazy & Jessica.
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I really wish there was a philosophy-themed forum on this board. I'm guessing most people come here looking for words of encouragement and/or information, but surely honest discussion about life and death issues can be had as well. This would have to be for everyone, regardless of stage, chosen treatment paths or prognosis. I'm guessing I'm not the only one who visits a certain forum here, not out of morbid curiosity but just looking for insight. This is a great place but clearly something is missing if some people still feel "lonely" - and I think I would include myself among them. I have also experienced the breast cancer give and take, and I think I've changed in a lot of positive ways because of it. I don't have the burning hatred for mine that some people have for theirs. Just knowing that others have or have had similar thoughts and feelings - the darker ones included - can be helpful.
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Interesting...I rather like the thought of a group therapy thread. It isn't about issues with treatment or se's or family or friends or onc's or any of that medical stuff - how are we each looking at the crap and what are we going to do with it?
I can say that after the initial dx - I made choices. I elected a 30% chance over not losing all my hair for a 2% increase of the chance of recurrence. Didn't lose my hair but ended up with recurrence after 10 years.
I did chemo for 8 months but refused the rads. It was a deeper tumor and close to where I had broken my sternum years before and they wanted to do rads to that area. It did come back in my bones - in the spine, not the sternum or locally and the rib that has a spot is on the other side. Did I make a bad choice?
I only took the tamoxifin for 2 1/2 years. At 22, I had what they termed a 'pre-cancerous lesion' on my cervics - it was frozen off and the dr. had laughed and said it could have developed into cancer in 30 years. It scared me that the tamoxifin was then stating an increase in risk of ovarian cancer - hell, that was too close for me so I stopped.
Did these choices doom me to have the recurrence I do now? Do I wonder? Sure do, everyday - what if, what if...and then comes the guilt, the depression, the 'do I bother', what is the point and the anger. It is always there under the surface. I just don't allow it to rule. I rule. I control. And I live with it.
So, here is the rah-rah in a different light...I just happen to prefer to be the rah-rah and I suppose that is what D'Nile is all about!
Hey, gang...I'm learning!
Hugs...LowRider
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Pompeed- you have horses? What do you do with them? I have horses also (4) and live in Delaware. I go into PA regularly (Lancaster area) because that is where many of the carriage shops are.
PM me if you ever want to chat ... about horses. All this BC stuff gets tiresome after awhile--- though I have one thread in here where we sound like a bunch of old hens sharing war stories and life experiences and it is... well.. fun. Who'd a thunk it!
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And just think how much money we are saving from seeing a shrink!!
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pompeed- Dont know if anyone told you but you are only allowed 5 posts a day untill you get some where around 40-50 posts not quite sure the exact number, just wanted you to know in case you tryed and couldnt after 5 posts and wondered the heck was going on, you may also pm any there is no limit on that.
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Pompeed,
I don't think that it is uncommon for Dr's. to disagree. Your reaction seems similar to my initial reaction. You want facts on outcomes that do not exist. My team was from the Mayo in Rochester and disagreed on unilateral vs. bilateral with ILC in only one breast; differed on more chemo or less. You are correct, you can do everything and possibly suffer from the treatments long term to buy life now-it is the risk vs. benefits scenario and what you are willing to live with. I understand what Western medicine calls "best practices" for today's treatment---my hesitation comes from the lack of long term studies on the treatment "du jour." I see the stories posted here about the people who knew women years ago who only had surgery and nothing else and lived 50 more years, and other about women with very low grade early stage cancer with 0 nodes who did everything and unfortunately relapse and leave the earth far too early. It just is not an exact science. It is flawed I think, by the influence of skewed data by big pharma,the unknown and by the genetic differences in each of us.
If all of your Drs.had agreed on the treatment would you have been any more likely to have it?
I have a low grade, slow growing but stage 3, invasive lobular cancer, a huge tumor and many positve nodes. I would love statistical data on the odds of an ILC slow growing low grade estrogen positive recurrence vs. more aggressive estrogen negative cancer risk with prolonged use of hormonal drugs. That data would help me decide if I would be better off stopping after a few years instead of the standard 5 years. Would it be easier to treat an ILC + recurrence in the bones than a grade three negative IDC in the breast? Until it comes out, or I find it, I just keep up on what I can and pester my Oncologist, and try and make choices that I can live with.
It is a volatile and imprecise disease that gets us on mental as well as physical levels. I think that for those who like "control" of a situation - - - it is at times excruciating. I often wish I could just take the treatment, ask no questions and go on with my life...just not me....I was taught at an early age to question absolute authority, much to the dismay of my treatment team
.Long may you run, whatever you decide.
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Whatever choice you make, it will be YOUR choice and it will be the right choice becasue it's YOURS. Good luck to you!
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Pompeed - My heart goes out to you. I don't think there are many of us here that have not felt at some point that we wished the whole cancer thing would just go the heck away. And for some making it "go away" means rejecting treatment. I mean, who wants to lose a breast...feel lousy for months on chemo...get burned by radiation...deal with the effects of the AI's? No one. But at present those are the options we have.
I finished treatment last April and frankly I feel my life is back to normal. BC does not define me and I spend very little time thinking about it. While surgery, chemo, radiation were decidedly not pleasant, they only lasted for nine months out of what I plan will be a long life. If it comes back, I'll do it all again in a heartbeat.
Sunday is my mother's 88th birthday. She's a 23-year survivor of BC (MX, chemo, rads) and an 11-year survivor of liver mets (chemo, AI)...and still going strong. If someone told her this disease is not curable, she'd have a lot to say to the contrary!
Patty
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Pompeed .. thank you. Whatever you decide will be the right choice for you and I do wish you the best!
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Heidi: I have horses and I have been involved with them all of my life. I've been very fortunate in my riding life and at one time, I was a professional. I make my living doing other things so I am no longer in that game as a pro. But I continue to teach and train. Have a lot of students, travel to teach clinics and give seminars and so forth..
I've already been told that if I agree to more treatment, I'll have to give up riding for something like six months. No good news there. That will not be good for my head. I will be much worse off, if I agree to treatment, trying to get through it without the horses. And it seems that the chances of riding really well again after all kinds of surgery and therapy are very, very slim.
That's what's in the balance: ride now for as long as I can ride, enjoy it and know that by making the choice to ride, I will not live to be my mother's age. Or do the recommended treatments, which are likely to get me to my mother's age, knowing that if I do what is recommended, I risk never being able to ride well again.
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pompeed.. don't count it out.. at all. i'm pretty darn active at 55.. i coach diving and accompany on the piano, which is actually fairly strenuous... don't do as much housework, but hay.
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Pompeed, I'm sorry your treatment hasn't been smooth. Mine hasn't been either and I empathize with your frustration and anger. (I had a lumpetctomy, two re-excisions and am told I will need a mastectomy. And maybe radiation. No guarantees! I'm pretty furious.) But I want to talk about you and how you feel.
I see that horses mean a great deal -- maybe everything -- to you. Are you certain you'd have to give up riding for six months? Is it possible you could ride less vigorously? Probably after some surgery you might have to give it up for a week or two, and I don't know your dx or treatment options but ... is it possible to push for a better fit for your life?
I would feel frustrated and angry too if I had doctors who didn't agree. That makes things much harder. I wish only the best for you, and perhaps a different doctor to help you find an acceptable course - one that includes much more riding.
Best, best wishes.
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Shirley:
I see you are in Wilmington NC. I'm on Pleasure ISland.
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pompeed, I really question the 6 months of giving up riding if you agree to more treatment. To recoup from surgery is typically 6 weeks of laying low. Whoever said 6 months may have misspoken and meant weeks, not months. If not, get another opinion. You are an individual. Doctors deal with every kind of patient imaginable, including people who think they're made out of tissue paper. Doctors deal with statistics, and you are an individual. No wonder you've been in a dark place, thinking you might not be able to ride in your future. There's plenty of us who just flat out say F--- what the doctor says and we do what our inner wisdom is best for us. In my case, it was tamoxifen. I took it for 26 months and got so tired of feeling like crap every day, that I stopped. ...I continued feeling like crap for quite a while and haven't felt like myself again til recently, but hey, I'm still here and able to complain about how much doctors don't know and/or don't tell us.
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- 11 Info & Resources for New Patients & Members From the Team