Do you regret doing Chemo?
Do you regret chemo? If so, why? Anyone here with ZERO long term side affects? And if so, what was your regiment?
I'm 37....I'm not ready to have major side affects and not sure what to do to try avoiding them should I decide to do chemo.
Comments
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GreenEyes, I was 53 and felt the same way you do. I was in excellent health, teeth skin nails everything good. I refused chemo but I really wasn't informed. All I knew was chemo was poison and seemed barbaric but there are many people out there that have gone through it fairly unscathed. I felt very sure chemo was not going to help me with bc recurrence and I still feel it was the right decision for me.
The idea is to blast the cancer cells and because you are healthy you have a good chance of not having health issues as a result. Get an oncodx test or mamoprint and see what it says.
I took aromatese inhibitors thinking I would not have permanent side effects and I found out that wasn't true. Luckily it isn't interfering with my life that much. I do miss how I used to feel before bc.
I am sure you will soon hear from others that have been through chemo.
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No regrets about chemo here. But, I was diagnosed at Stage III and was Grade 3, triple positive. Personally, I've had no long-term side effects except for sparse eyelashes. I am more likely to have permanent side effects from my aromatase inhibitor (Aromasin), which has already blessed me with osteoporosis.
I did Adriamycin + Cytoxin (X4) and Taxol (X12).
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stage and risk factors play a huge role. I went through the ac/taxotere. I don't know of anyone with Dcis only who did chemo. Yet i have seen a few dcis onlys come back a few years later stage iv which baffles the mind.
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No regrets. I had a positive lymph node, and intermediate Oncotype, did not want to take any chances. The only permanent SEs for me is that one of my toenails is wonky (growing thick instead of long), and it threw me into menopause (I was 48 at diagnosis).
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I don't regret my four rounds of TC, and side effects weren't bad at all. That said, can you get Oncotype testing? My number was high--that's the only reason I did it for my small tumor.
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I am 3 out of 4 in on TC so I can't answer to long term effects of course. Agree, with okkate, no regrets. My number was also on the upper end of intermediate is why I chose chemo. I'm very, very fortunate with no side effects
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No regrets, no se. Wanted to do everything I could to kill it. 6 years later, still ok.
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I’m 38, was 37 when I had chemo. No regrets. So far I don’t have any long term side effects that I’m aware of. My body is weak and stiff bc it’s been through so much and is still going through so much, and I need to get back into a regular work out routine.
I get the occasional tickle/twinge that may be neuropathy, but it’s not constant or painful. During chemo I had very little nausea, mostly fatigue and body aches.
My tumor was big and grade 3. It had spread to some lymph nodes. I have no regrets about throwing everything at this cancer
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No regrets at all. I also did four rounds of TC and had minimal side effects.
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no regrets at all. At the time, i was really worried about my hair coming back, but eventually it did come back, and with more curl than before. It looks good, though it did take me a while to admit that to myself....chemo itself was no fun, but it was definitely doable. I worked all through the process. And the best advice I got was to keep exercising during chemo: it helped tremendously even though some days I didn't feel like doing more than walking around the block!
I've had more permanent side effects from the AIs than I did from chemo for sure. AIs probably hastened the inevitable knee replacements I've had due to osteoarthritis (have had both knees replaced). I had a full cardio workup before my knee surgery and know that my heart is fine, which I worried about...
As others have said, you might want an oncotype or mammaprint test before making a final decision, given your profile. Also, I noticed you are supposed to start rads right away: just fyi, most MOs want to do the chemo before the rads, I believe.
Best wishes to you.
Octogirl
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No regrets here. My cancer was at first deemed "garden variety" IDC, stage 1 ER+/PR+. After the lumpectomy it was discovered taht the tumor was slightly bigger than they first believed and it changed to PR-, a somewhat more aggressive type. Coupled with a high intermediate Oncotype, my MO recommended 4 rounds of TC.
Chemo wasn't fun, but it wasn't nearly as difficult as I thought it would be. I looked pretty great, other than my hair falling out. My energy was fairly good, never had any vomiting. Fatigue was my biggest issue, and taste changes. But that all reversed itself within 2-3 months of finishing up chemo. Hair came back. As for long-term side effects, I still have some memory and concentration issues. How much of that is age-related is hard to say. I'm 61. It mostly affects word recall (can't think of the word I want to say) or very short term memory. But I remember the important stuff--bills, birthdays, doctor appts, etc.
I would totally do chemo again.
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mustlovepoodles, our experiences are similar except I don't even have the fatigue. Before chemo I worked 430am-1pm shift. Got up at 3:15,am .didn't go to bed till 10pm. Shame on me and that has changed. So my baseline tired beforehand was off the charts. Slap me for saying this but just piggybacking off what u said. I would do it again too. I know some get 6 rounds of TC rather than 4. I would gladly go 2 more if there was evidence to support it could possibly decrease my chances of recurrence.
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just curious..do those of you that had oncotype s find that it decreased the results from your path report? Meaning..i was 100% ER, and 3% PR at first. Then i looked at oncotype graph and for being 100% I should have been off the chart to the right but I was not. I was midway on the chart. So i take that as not as ER positive as first reported?. Of course it lowered me to PR neg which I expected. I guess it just gives a more detailed report or maybe it's a different form of testing than the staining altogether, I don't know. It doesn't effect my treatment it's just me trying to understand my disease!
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No regrets. TCx4 and I'm glad I did it. I have a couple of nails that still have some lifting, but 3 years after finishing, that's the only issue I can attribute to chemo.
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DebAl - Yes, I had what you're talking about - to the extent that it changed my dx and treatment plan as they're essentially considering me a triple negative based on Oncotype ... but still considering putting me on tamoxifen because I scored 10% ER+ on core biopsy
The tests measure different things and while there is a high degree of concordance, it's known that discordance can occur:
"As all discordant cases were positive for ER expression by immunohistochemistry and negative by RT-PCR and these cases were relatively weak to moderate positive immunohistochemically (mean H-score of 105.4), the immunohistochemistry methodology appears to be superior to qRT-PCR in detecting hormonal positivity in tumors with low intensity or heterogeneous ER expression."
" For all of these practical reasons, we conclude immunohistochemistry assays are superior to qRT-PCR for analysis of ER and PR status in the management of breast cancer patients."
https://www.nature.com/articles/modpathol2011219 -
Thank you all so much for the replies. It was really encouraging to see it is possible to do it and not have major long term side affects. A few things you ladies mentioned...I am not DCIS only.
IDC mixed with DCIS both times. I was dx with mulifocal last July-3 tumors. Onco came back as 15. I had surgery and was advised to take Tamoxifen. Due to several other surgeries and just scared of the stuff...I didn't consider starting it until January. Before I could, I had a new tumor. January I had my 6 month check up--all was good. Febuary I felt the new lump---no one knows if it was "missed cells" or if it is a new tumor all together. I am split betwen doctors in Idaho and Montana. The first time everything was done in Idaho (where I am from). Now...I did surgery in Idaho (no breast only surgen in Montana) and was looking at chemo/rads in Montana.
Idaho doctors say no chemo--rads only. Becasuse I didn't take tamoxifen and because the onco dx the first time was 15. They did not want to do another onco at all---I pushed for it and it was declined by insurance because they submited it as a "local recurrance".
Montana doctors- resubmiting onco dx as a new tumor--currently waiting for result. This 2nd time, my progeston is lower (though still positive), the tumor was NOT in the scar, Ki67 is much higher, it came back in 6 months--sooner than normal for a recurance, I am young, STRONG family history of bc-though negitive for genetic testing, and the belief that my "low 15" will no longer be low when the TALORx results come out---they recomend chemo. TC 4 times. My MO is also in touch/knows an MO that is working directly on the TALORx trials and got feedback from her- she strongly recommended chemo and NOT Tomxifan but a combination of lupron and letrazol---I don't much about those yet.
As for rads now....we are trying to close on a house and move back to Idaho mid July. I need to be closer to family and help as my husband is gone for work a lot- 2 weeks gone/then 2 weeks home. If I do rads in Idaho--I am 3 hours away from the closest facility however, I can do chemo 20 min from the house we are buying. My Idaho doctor said if the onco dx came back high he would give me chemo after rads, but recommended I start rads asap and not wait for the TALORx/onco dx results. I was comfortable with that plan and start Wednesday.
I feel like I am in this weird gray area. I can't find studies on treating multifocal, only how high the recurrance rate is which is out the window. I don't understand why someone with one tumor is treated the same as someone with 3.
Also, my husband is 100% agaist chemo....to the point I'm not sure what it would do to our marrage. I know he loves me, he just feels it is barbaric, will kill me and I should eat "dandelion roots"....little sarcastic but he did send me a artical on how it will heal cancer in 3 days. I feel like I should do chemo, hoping maybe as time passes he will come around. He didn't "research" the first time....he did the 2nd time....so he is a bit behind on the processing. I had all the full body scans and was beyond EXCITED when they were clear...he didn't understand why my family/I was so excited. He had NO IDEA they were looking for mets or what it meant.
Quality of life is more important than quantity.....but I feel like now is the time to fight...not when they tell you you have 6 months to live. Thats the time to consider quality over quantity....at least at the moment that is what I am thinking. Thanks for hearing me out...this is soooo long. lol
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OP - I'm still in the midst (8 more taxols to go!) of it but no, I don't regret it, even though I had a really hard time with AC & was hospitalized twice for 5 days each time.
the side effects of cancer - death - worry me far more than the side effects of chemo. I was all prepared to fight for chemo if I got an intermediate Oncotype score & if my MO didn't recommend it ... but then my Oncotype came back as triple neg & that changed the entire picture. -
What is barbaric about chemo, greeneyes?
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Star---I feel like chemo has came a LONG ways...so not barbaric. My husband.....he is stuck reading the history of chemo (which is bad), found some article that said 80-90% of people die from chemo (i tried not to laugh at that one) and that it "causes" cancer. He's leaning towards the homopathic treatment. He dosn't like rads either....but feels the "negitive" is not as bad as chemo. This is why I am hoping over the few months of rads he will process and come around. I can respect he would never do it, I just need his support for my decision what ever it ends up being.
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greeneyes - for your husband, I think sometimes some people need a cold bucket of water dumped on their heads.
Like this first sentence (of an otherwise very positive article which outlines the evidence based lifestyle interventions that prevent recurrence)
"Although more than 90% of patients with breast cancer have early stage disease at diagnosis, about 25% will eventually die of distant metastasis"
http://www.cmaj.ca/content/189/7/E268
I swear many people don't realize that you don't just cut it out & go merrily on your way. 1 in 4 is way more than I'm comfortable with. -
I agree. It dosn't help that my husband "liked" the doctors that are not recommending chemo. lol
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Just be aware of the risk vs benefit, there can be unwelcome side effects that may or may not be permanent. There alot of angry people out there who had permanent hair loss especially with taxotere. Educate yourself before getting treatment. I was very naive about hormone therapy before I took it. Do you what you think is right consider your oncologist an advisor not the decision maker.
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I was diagnosed at 39, and did dose dense AC+T (4 doses of AC, every other week followed by 4 doses of taxol also every other week). I don't regret it at all, but I do have some long-term side effects. I finished chemo 9 months ago, so I think it's too soon to say if they are truly permanent.
I still have some mild neuropathy in my hands and feet. It isn't bad, and really doesn't have much impact on my life. It's just a vague numbness in my fingertips.
I was premenopausal prior to chemo, but my periods have not come back. It is likely that chemo has made me infertile, but I knew that was a risk, and I didn't want to postpone chemo while waiting to see a fertility specialist, dealing with insurance, etc. I'm sad about not having children, but I still don't regret doing chemo. Since I was diagnosed at stage III, it honestly didn't feel like I had much of a choice, anyway.
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moth, thanks for the link to the article, very interesting. Wow, having that additional info did change things for you. Glad you could understand what i was asking lol. Green eyes, first of all a big hug and I'm sorry you are dealing with this again. No apologies for a long post, that's why we are here! Moving is stressful but I'm glad you will be closer to family for support. I can tell you are scared and it is a decision that isn't always easy. Lean on those around you that support your decision.
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Green Eyes, so sorry that you're dealing with this. You are very young to have BC, and to have a recurrence within 6 months! Are your docs breast cancer specialists? Perhaps your husband would be more reassured if you got a second opinion. I'm a bit shocked that you didn't have rads after your first lumpectomy, that is the standard of care. There are many different types of chemo regimens, I suggest searching breastcancer.org for information about all of them. Some are harsher than others, and there is the possibility of permanent side effects. That said, if I were in your shoes, I'd throw everything I could at this beast. You don't say if you have children, you can have eggs preserved if you want to have children after treatment.
My MO is great. I had so many meds to counteract the SEs of the chemo. Meds to prevent nausea, Benadryl in case I was allergic to the meds, meds to boost my immune system. It definitely wasn't as bad for me as what you see on TV and in movies, but it wasn't pleasant either. Good luck with your decision and your treatments
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No more kids for me...that would be more stress than cancer. lol I do have two boys, 12 and 14. I actually has uni mx---thus the no reason for rads the first time. I have had 2nd and simi 3rd opinions. lol At this point....waiting for the onco dx and TALORx results. I think they will give me more peace either way. I have been to Huntsman in Salt Lake, I'm thinking I will go back once I have more details.
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Greeneyes, you are doing well getting all the info you can.
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I hugely regret doing Taxotere. I was 47 at DX - 6 years ago, and the hair on the top of my head never came back, so it's been 6 years of covering my head, and will be forever. I was never warned of that risk, so to say I was shocked, is a huge understatement. I also have permanent neuoropathy in my feet, which is pretty crippling. I cannot wear closed toed shoes or stand on my feet for very long. I gained about 40 pounds on chemo, and in 6 years, have only been able to lose 15 of those. All things i did not know could happen. Taxotere is some serious stuff, and had I known all of these possibilities at the time, I never would have taken this particular drug.
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I was recommended the "standard" 4 A.C. and 16 Taxol. I have one more A.C. to go and opted our of Taxol due to my severe neuropathy from 42 yes diabetes and 20+ MS jyst don't think I can handle risking getting worse. I can't wait to get rid of the metal mouth/rotten egg taste and for the life of me can't understand how so many can have fairly normal routines.... I am dragging! But this too shall pass! I think you need to do what is best for YOU and only you can know that. Blessings
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I am not open to the risk of no hair growth. lol I have asked to have Taxol instead but have not got a solid answer if they are willing or how it would change the schedule.
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