I'm considering refusing chemo

With your heart history I would be concerned too...



Look, I'm a person who declined several parts of the suggested treatments because I felt that for me the risks outweighed the benefits (full lymph node dissection and radiotherapy). However I did not refuse everything, and in fact went back for a full mastectomy after refusing/quitting rads.



If you are truly basing your refusal on concrete reasons then stick with your decision, but know that you'll likely have to explain your reasons to all the drs and can't expect them to all think you are right. Going against dr recommendations requires a bit of guts :-)



Jenn

Hello....this is a huge decision. I can only tell you what I did...as a "medicine hater" I certainly didn't want all the poison in my body(since tylenol was even toooo much in my book!) But, this is cancer...mine is very aggressive...I was 39 and I didn't want to look back and say "I wish I would have _____." For me, I didn't want to miss out on what the experts told me and what treatments would (hopefully) get me to old age. None of us really know...we can't say for sure...its cancer. Its a friggin' nightmare. But we can make this our journey...uniquely our own. Yes, oh yes, chemotherapy was brutal for me...radiation fried my inners. But, if I was able to go back and do it again, I would. That's how comfortable I am with the choices that were made. I just really feel its so important to do it your way and have no regrets.

Best wishes. XOXOXO

On the one hand, you have valid health concerns for wanting to opt out of chemo, and the only thing I can think of suggesting is getting not 1, but possibly 2 other opinions from additional MO's.  Because on the other hand, your current MO has valid concerns and reasons for wanting you to have chemo (age, size, grade). 

I don't know how close you are to major cancer centers, but if you are, perhaps, you could also have a consult with a cardiologist used to working to with chemo patients, to maybe also give you some ideas of what you can do to protect yourself, if it is a unanimous agreement that chemo would be important. 

Have they discussed radiation with you as well, or just chemo? 

You still have another 50 years ahead of you, and had an aggressive cancer removed from you - and it had already spread to your nodes.  Please go get additional opinions - it's a big decision to make, and maybe hearing doctors express their reasoning with you will either confirm your decision to you, or make you reconsider.

Good luck.

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According to the criteria for the Oncotype DX test, YOU ARE ELIGABLE TO RECEIVE THE TEST.  Not having the test is MORE confusing.  Inform your SURGEON that you want the test done.  Women who are Stage 1 or 2, and are lymph node negative can have the test.  If your surgeon will not follow up, nor will your medical oncologist, then find another doctor who will do the test.  That is of course, if you are still considering chemotherapy.  Your physicians should be helping you make your decision with the best available information.  Without a doubt, a Grade 3 tumor is considered aggressive.  The good news is despite being Grade 3 and being LARGE at 4 cm, you are lymph node negative.  Few Grade 3 tumors have LOW Oncotype DX scores.  If you do have the test and find out you have a low score, then you might be more comfortable deferring chemo, or choosing a chemo that is "lighter."  However, MOST Grade 3 tumors have HIGH Oncotype DX scores and in that situation, it would make chemotherapy worthwhile.  You need to make an informed decision.  Not having the information from the Oncotype DX test makes your decision all the more difficult.  Also keep in mind, despite being node negative, your breast cancer can recur down the road.  Again, you are very young and have many years ahead of you and your age is also an important factor as to whether or not you should have chemotherapy.  Finally, because you are young, you should also consider having BRCA testing as well.

Good luck.

I second the second opinion suggestion as well.  It's ok to get second or even third opinions. The two medical oncologists that I saw suggested different chemotherapy regimens so you may get a different suggestion.  Also, as far as I can tell from what I have read and heard, doctors can't really know if a one or two cancer cells have escaped from the original breast tumor.  That is the whole point of chemo.  Chemo is supposed to kill any cancer cells that might have escaped from the original tumor either by traveling through the blood or the lymph.  I don't think anyone or any test can tell if there are a few escaped breast cancer cells lurking in another part of the body somewhere.  It won't show up on a scan.  Chemo is there to kill them.  Grade 3 tumor cells also are pretty messed up as cells go and are very suseptible to chemo - which means chemo works good to kill them.  Get a second opinion from a doctor not associated with your current doctor even if you have to travel to a nearby town. 

Insist on the Oncotype DX test AND keep an open mind.  Your Oncotype DX score might persuade you otherwise....  Happy Holidays and good luck!

Amyi, I am a little late in finding you, but wanted to put in my 2 cents, but I also don't want to scare you. I want to support you in whatever you decide, but I think my experience may be not as common, but there are several women who have had difficulties similar to mine.



I WISH I had refused chemo and done only tamoxifen. I had lots of health issues prior to chemo, was most worried about heart damage from adriamycin, so MO went with taxotere, which gave me permanent neuropathy so I am now unable to work with my hands much, including piano playing, typing, gardening, etc. Personal hygiene was difficult for a long time, still tough to wash my hair. She discontinued taxotere after 3 doses of the planned 4, then had one dose adriamycin that hit the heart and elevated cardiac enzymes, even though that one dose was not supposed to do that. So now I have to be monitored for heart failure the rest of my life.



My first question to my MO before chemo was "just how good is tamoxifen and would that be enough?" and she beat around the bush, pushed the chemo. I wish I had done ONLY tamoxifen, and would have stuck with it even with the side effects if I had not done chemo. As it was, I had severe SEs from tamoxifen, so have discontinued that now. Did not do rads - was and AM terrified of the damage that does. I had initial lumpectomy, then chemo, refused rads. PET scan was clear one month after chemo, then couldn't tolerate tamoxifen, couldn't tolerate a succession of drugs that were supposed to help the neuropathy and tamoxifen SEs, had recurrence 6 months later, did BMX and ALND, tried tamoxifen again, still couldn't tolerate it. So recurrence again a year later, more surgery. I lost all trust in my MO because she underestimated the harm from the chemo and overestimated its benefits.



I think you need to have faith and trust in your MO. Your situation is different from mine in that you are a little younger. As a couple of folks mentioned above, there are less toxic regimens, and my MO now says the old standard cytoxan/methotrexate/5-fluorouracil would have been nearly as effective and much less toxic, but it is 6 treatments rather than 4. My mother had that 18 or 19 years ago, had only temporary SEs and is living a great life right now. I am not.



If I had a do-over, I would have been more aggressive with surgery (BMX right at the beginning rather than waiting for a recurrence) and would not have done chemo, but would have stuck it out with tamoxifen. Now that the damage is done, I don't use ANYTHING that will decrease my quality of life from here on out, even if it is allegedly treating the cancer, that is how bad the neuropathy has affected me and my life. And with the recurrence, my MO told me there is no more chemo available to me now because of the neuropathy and potential heart damage. If I had NOT done chemo initially, it might still be available to me if I progress.



I agreed to chemo because my family, friends, and entire health care team (with one exception) expected me to do it. None of them listened to my fears, and now I am resentful of every one of them. Most of the time I keep that anger and resentment quiet, but it occasionally flares when I am having a really bad day and I am unpleasant to those who love me. I know they pushed the chemo because they love me and want me around, but they had no idea how it has affected my life. Now that I am "done with treatment" they all expect me to get back to being my old self. That can't happen as long as I can't do those things in life that gave me pleasure.



Again, please know that this is MY experience only. I am extremely distrustful of medicines and doctors in general, but now have a wonderful PCP who is helping me with survival issues without doping me up on a bunch of meds that make me feel worse.



Please feel free to PM me if you have any specific questions. Best wishes, and know that I will support you in whatever your decision.

VR, yes, I know the BMX would have helped prevent the local recurrence that I had. So far, luckily, both recurrences have been local, and both have been theoretically removed. And yes, it doesn't make a difference between the two in a given population, but for me as an individual, I suspect that the MX would have reduced MY risk of local recurrence.



Yes, the chemo was supposed to prevent distant disease, so I am hoping it did, and I know tamoxifen is supposed to be really good to prevent distant or circulating disease as well - just wish I had chosen that rather than chemo to start with. The chemo alone was supposed to reduce risk of recurrence by about 15%, the tamoxifen alone would reduce risk about the same, and together they were supposed to reduce risk by about 30-40%, but what I didn't understand was that is RELATIVE risk and not ABSOLUTE risk, so in reality, the numbers they quote really don't mean all that much in an individual's case. So they usually recommend "the shot-gun approach" using all available treatments and hoping the combination works because they really don't know in an individual case WHICH one might work, so "better be safe than sorry" if you want "a cure." I really can't blame them - there is so much more to learn before therapy can be more individualized with better success rates.



Bottom line is, there is local disease and there is systemic disease. Both need to be addressed.



By the way, nice to see you here.... I have not been participating in some of the threads lately - just a few, trying to get my life back on track - but think about all of the wonderful women I have met here and hope they are all doing well. I pop in occasionally here and there and enjoy seeing familiar names.

amyi - I really wouldn't go into a meeting this early in your diagnosis without one support person with you or you run the risk of coming out and not remebering some of what was said, and maybe even having agreed to something on the spot instead of thinking about it. A support person is good for remembering bits of the conversation you miss and for chatting it over with afterwards.



Practice the words "Thanks, I really need a bit more time to think this over" and "I may want to get a second opinion".



I agree with many of the others here, if you qualify for the additional testing then insist on it - always get the scientific information not just a doctor's personal "experienced" opinion - they are not always right... And try and get an independent second opinion...



Jenn

Hi amyi, cancer is so random....yes their are %'s and whatnot, but there's always that margin of error, you know? Sometimes it works, sometimes it doesn't. I just hope and pray that whatever decision you do make, you make it and leave any reservations behind you. I was just reminded of the song Freewill by Rush. The lyrics: "Even if you choose not to decide, you still have made a choice."

(((((Merry Christmas))))))

I don't know if you have made a decision or not, but I second the suggestions to see another onco doctor at a center not related to your present one. I went to two for opinions and it was very helpful.

I also had the Onco test. I requested it and had to push a bit to get it, but the results made me realize that chemo was the way to go for me. I didn't have the Braca test as all of my doctors felt my ethnic background didn't warrant it and there is no cancer at all in my family. My cousin's wife definitely did need it - she's from eastern european stock, and her whole family is plagued by breast cancer.

Also, go to your cardiologist for a check up and a discussion. I did and it was reassuring. 

I have the added complication of having indolent Lymphoma which was discoved by my pathology, so it had to be taken into consideration as well. I went to a Lymphoma specialist.

The more you know the better you will be able to decide what is right for you. And, take notes in a spiral notebook as you go through all of this. These are especially good when you see a doctor or nurse by yourself, as I often did.

Good luck and best wishes.

Oncotype DX is used to determine if you will benefit from chemo. If you have a low score, then your risks of chemo will generally outweigh the benefit. Remember though, the doctor will carefully look at all the characteristics of the tumor as well as your health and age and then decide what treatment to recommend. Endocrine therapy, such as tamoxifen is systemic. That it, it works throughout your body. Together with your physician, you will be able to decide if endocrine therapy is right for you. Good luck!

Amyi, nobody can honestly say you are "cancer free." Even though you just had a few cells in your lymph node, cancer can get out through the blood stream, without going to the nodes. Many women on this board are Stage IV and had no lymph nodes involved. On your pathology report there should be something discussing whether you have "LVI", which is lympho vascular invasion. If this is positive it would be a sign that some cells got out and you would then really have to consider chemo.

Best wishes whatever you decide!