Concerned that treatments will ruin my health
So many of us have been active and healthy before diagnosis. I felt 10 years younger than I am (age 51), no aches or pains, with enough energy to feel like I could conquer the world.
I have no problem accepting short term side effects of treatment, but I'm having real anxiety attacks over lingering side effects including those that may come from Aromatase Inhibitors and from the osteoporisis meds I'll no doubt have to take.
I'm really worried that I'll survive the disease but I'll never feel as good as I once did. I'm looking for some reassurance that there's every possibility that I will feel great again.
Comments
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Hi there
Try not to worry about "lingering" side effects you wont know that there will be any, and worrying wont stop them if theyre going to happen.
I was dx in 2002 (aged 30) and have had 5 lots of chemo, countless hormonals, and the only side effects I suffer are the short term chemo related ones, your energies will return and you will feel better.
Be positive
good luck
Sue xx
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Wow, that does make me feel so much better! Thank you Sue. I'm trying to do a ton of research before I start chemo, while my mind is fairly clear anyway
. I usually am a very positive, optimistic person. I think I've just had too much time to think and worry. Plus, with the surgery pain/lack of sleep, I'm finding it more difficult to keep things in perspective. -
Texas, I was planning to respond to your post earlier, but I didn't know quite what to say. My first reaction to the title of your thread was going to be something like, I'd be more concerned that a breast cancer recurrence would ruin your life.
I don't mean to be flippant about the risks and SE's associated with BC treatment. I had a mastectomy/SNB in February, and 4 rounds of chemo that were completed in June. Now, I'm on Arimidex. Every one of those treatment "choices" brought serious side effects, some of which I'm still dealing with.
Really, though, the SE's of these treatments are nothing, compared to what a BC recurrence would be like. Sure, I have some aches and pains that are worse than before my dx; and my hair is still awfully short (only about an inch); and I am flat on the left side of my chest, so I wear a prosthesis sometimes; and I did develop mild lymphedema this past summer...but it is under control now.
Like you, I had to weigh the discomfort--no, the misery--of BC treatment against the benefit it would provide. My risk of recurrence (distant recurrence = mets) in the next 10 years was calculated to be around 17%, assuming I did not get chemo but I did take Tamoxifen or an aromatase inhibitor for 5 years. I decided to decrease that risk by getting chemo, which isn't a guarantee but should bring my risk down to around 12% (after 5 years of Tamoxifen or an AI).
I see that your BC is a bit farther along than mine was. That gives you even more reason than I had, to "put up with" the SE's of treatment. If my experience was typical at all, it showed me that we can do this. Treatment did not ruin my health, but a BC recurrence surely will.
Hugs...
otter
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Otter
How was the calculation for the risk of recurrence done. Is it something your doctor did??
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Texas 357
That is the bummer of being diagnosed. Your life will never be the same again. The side effects I have had from chemo and radiation are doable. You just need to eat well and rest a lot along the way. Over time I would hope the side effects become less and less. I just finished rads last week and my breast will be sore for another two weeks and the only thing I have from taking the chemo is my energy level is not back yet. Otherwise, I feel pretty good.
Look after yourself
Karen
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I was just diagnosed second time in Oct 2008. The first dx was in 2003 at 39 yrs, I had a lumpectomy(left side), chemo, and radiation. It was a tiny tumor, clear margins, no lymph nodes involved. I didn't understand the need for chemo but listened to the doctors. Well it came back anyway. I just had a bilaterial mastectomy with lat flap recon last week. I know they are going to recomment chemo again. Again my lymph nodes and margins are clear. Chemo was absolute horror for me as I have such a sensitive stomach and nothing worked for the side effects. I didn't even make it through all of the chemo they planned. Originally it was 10 and only made it through 7. I am seriously considering saying no to the chemo this time and looking at alternatives, diet, stress, etc.
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Otter, I appreciate your straightforward response. I can see where my question might sound a bit shallow.
But I deal with bad news by taking time to absorb all the implications, wrapping my mind around them, and coming to terms with them. That's how I function. It generally doesn't take me long to bounce back to a very happy disposition once I've got all the facts.
In that respect, I feel justified in asking about real life experience vs. just reading the laundry list of side effects that the drug companies produce. I know I'll be taking these drugs ... if I have a good idea about what to expect, I'll be better prepared emotionally to deal with the side effects and move on with my life.
Of course a BC recurrence would be worse. I never meant to imply otherwise. I've got my mom and sister contending this is "no big deal" and everything will be exactly as it was before just as soon as I complete treatment. Meanwhile, my doctors are throwing bad news at me each time I go into their offices.
I'm just trying to sort things out and adjust to the possibilities.
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If you want happy reassurances, you probably don't want to read this. But personally, I feel as if chemo and radiation aged me about 10 years, maybe a little more. I was a pretty healthy 50 year old when I was diagnosed a year ago. Went through chemo until beg. of May, surgery end of May, and rads from mid-July to end of August. Still getting Herceptin every 3 weeks.
Joints started hurting as soon as rads started. Digestive system is still somewhat cranky. My face looks much older than it did a year ago, I believe that was the chemo. Sitting still for more than a few minutes results in pain for the first 5 minutes of movement upon rising. I have a lifelong risk of lymphedema now in the 20% range, maybe more.
This doesn't mean it's how you will react. Just how I did. I think younger women may bounce back from it all a little more quickly.
And I don't mean to complain. I would do every bit of it the exact same way again ... I believe my treatments were very successful, and I'm grateful not to have cancer any more. But ... I didn't know I was going to hand the universe any semblance of being or feeling a young 51.
Emotionally, things will never be the same as before. Some people may be able to blot the whole cancer thing out. I can't, and I'm not sure I would want to.
And by the way, if any family member suggested to me that this is "no big deal" I'd literally smack them, and hard.
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Chemo definitely had aged me. But I am healthier for it now. (Knock on wood). Towards the end of my chemo I remember getting out of breath quickly (I could not hike). Going for walks my hip bones hurt, could not walk very far. I gained a lot of weight. My cholesterol went up. I fought hard back to get my health back, and yes it was a lot of work. The upside is I feel healthier now than I did 10 years ago.
Depends on your genetic make up and your chemo regimen, rads, et al. The human body can heal itself. You cannot get osteoporosis unless you are genetically predisposed to get it. (correct me if I am wrong here anyone). People get osteo without chemo treatments.
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The aromatose inhibitors I have had no experience with.
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KKing, I got the recurrence risk figures from the report of Oncotype DX testing on my tumor. That's a test that can be done on tumors that are ER+.
There are other ways to obtain similar information. One on-line source that estimates recurrence risk and mortality is a website called "Adjuvant!Online": http://www.adjuvantonline.com/index.jsp
Many oncos use Adjuvant!Online to estimate risk of recurrence with or without chemotherapy or hormonal therapy (Tamoxifen or aromatase inhibitors). There is another website that works similarly, but gives estimated lifespan: http://cancer.lifemath.net/breastcancer/therapy/index.php
Texas, I sure understand. I joined this site the day after my biopsy in January, because I saw a chance to talk to women who were going through the same thing I was experiencing. I also read everything I could find, about all the treatment options. You always need to ask yourself if you will be better off with, or without, a particular treatment. That's true every step along the way.
otter -
Texas, I'm not sure how my experience compares to what yours will be. I was 41 when I was diagnosed, generally healthy,not a couch potato but not an athlete either. I echo what LJ said -- I felt like chemo aged me 10 years. However, radiation was not nearly as debilitating -- I had some fatigue but I worked through treatment and drove 3+ hours to a wedding the day after I was done! Now I am 6 months out from chemo and trying hard to get my body back in shape. I did gain weight, but not everyone does, so maybe you will be lucky on that front. I am taking Tamoxifen and have no side effects -- it may be slowing down my metabolism a bit but it's hard to tell.
At this point, on a daily basis I feel perfectly healthy and normal. True, I have 15 lbs of extra weight, short curly hair instead of my long wavy hair that I always had, and a slightly swollen hand from mild lymphedema, and oh yes, I am missing a breast -- but really on a daily basis I feel pretty normal, believe it or not. I recognize that my body is very deconditioned every time I take an aerobics class -- but I know that I CAN take an aerobics class and I feel good about that. I truly believe that if I continue to work at it, the long-term effects of having gone through bc treatments will be minimal.
Don't shoot me for this, but I do think having a positive attitude makes a difference in this area (not that it's going to prevent a recurrence, I'm in the same 12-15% risk category as Otter). As soon as my hair started coming back and I started feeling better after my mastectomy, I decided that I was done being a sick person. For my psychological health, I need my life to be as "normal' as possible. Not everyone can or wants to deal with things in this way, but it is working for me.
Lauren
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Hi,
I'm 52. I finished 6 rounds of chemo with many SE and completed rads at the end of August. It was a long hard year but worth it. My hair has grown back, curly but it's thick and healthy looking. I'm not tired anymore. I put in a full day without needing to nap. I lost weight during chemo and rads and have put it back on. I still have tightness in my chest area. I had a bilateral mastectomty with reconstruction and one side failed. My shoulders at the end of the day are soar but I'm grateful. I feel stronger every day. I find my skin is dryer than before and it seems thinner. Chemo does alot to the body, but if it didn't the cancer would. Chemo or rads isn't a pleasant experience but thank God there is something to fight this awful disease. I wish you a great holiday and many more. Good Luck, and hang in there.
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MAMHOP (well..everybody, really..) probably sums up well what all this means for me. Physically, I am feeling pretty damned good seven weeks out of chemo. I can breathe. I can think. Most days I feel pretty sharp mentally. What I really hate is how it has affected me emotionally. My life BC (before cancer) was gritty, physically hard as nails, full-on and pants-pissingly funny. I was the blindest optimist (pig-headed???) you ever met. In my life AD (after diagnosis) I am weak, I have lost my confidence (I have tested this in all my usual habitats), I have no long list of hair-brained projects
basically because nothing seems so important anymore. I am very pissed off with cancer because of my losses. BUT I remember a few important facts (like my mantra: all things change) and I am exercising (despite my 'broken' AI feet and 'busted AI wrists and fingers) because I REMEMBER the endorphins. I also REMEMBER that my pig-headed approach to things will defeat this fecker and I WILL be bigger that I was BC. (And I am NOT just talking about the BF weight-gain!) All things change. All things change.... -
I can't really say if your health will be ruined. I didn't have chemothearpy and only a minor surgery.
I can say that you need to be attentive to your teeth! Cancer treatments do a number on your body tissues and a dry or inflamed mouth is a bad situation for dental health.
Don't let cancer ellipse your dentist!
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Roseg...You mentioned dental health and I had read earlier about not having dental work during chemo as you are more prone to infection. I'm going to be on chemotherapy in the near future and I already have dental issues. Right now they're not major in terms of discomfort to me, but now I'm concerned that they could become major and I won't be able to do anything about it because of chemo.
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I have a question. I am not in the best shape as it is now. I have rheumatoid arthritis in both knees and in my right hip. I have a hard enough time walking now as it is. I have my surgery Dec 15th so I'm a while away from chemo.. but I think about it so much how it is going to affect my health. Will it make it worse?
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Joy, it's nearly impossible for anyone here to accurately predict how chemo might affect your health.
First, do you even know whether you'll need chemo? With such a small tumor and ER+ HER2- characteristics, you might not find an oncologist who thinks you'll need it. So, don't borrow trouble (to quote a useful phrase I read here awhile back).
Second, even if you do end up needing chemo (like if you have your tumor Oncotype tested and the result comes back really high), the type of chemo may influence how it affects your RA. Most of us with ER+ tumors are put on aromatase inhibitors or tamoxifen after we finished chemo (if we needed chemo). It's those drugs, and not the chemo, that makes many of us ache. How might those SE's affect your existing RA? This is something you'll need to ask your oncologist.
Exercise is good. You already know that, right? It seems like it would be really difficult to maintain a regular exercise routine while on chemo or an estrogen blocker. It is important, though. For one thing, it makes us feel better. For another, it's healthier.
So, please don't worry at this point about how chemo might affect you. There's plenty of time to worry about that--and find out the answers--once you get all the facts.
otter
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Otter,
The doctor said I would only have to have chemo if the lymphnodes were affected. If not, then just the mastectomy. He did say I would need the hormone drugs, or whatever they are called. I know I shouldn't be worried about things I'm not sure of. It just crosses my mind.... what if....
I know I just need to take things one day at a time. But some things are easier said than done. I'm trying though. I'm trying.........
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