I'm considering refusing chemo
Comments
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The oncotype test is now being recommended for node-positive women too - although it may be for slower growing tumors. That was not the case when I was dx'd but the practice has changed - whether it is part of the official guidelines I am not sure.
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Mg, that's not correct about the node. One can have up to 3 positive nodes and get the Oncotype Test, and possibly no chemo. It happened to me.
ETA: Athena it is very much the current protocol.
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Oh I didn't know that because my MO said if one was positive for premenopausal women they don't do it. I know the guidelines change seems to change at a drop of a dime. For instance now some doctors aren't removing extra nodes anymore if cancer is found because they feel treatment will kill it. Plus I think it depends on your MO and where you live. When I see my MO I will ask about onco test just so I can know. Don't want to give out wrong information.
Thanks ladies for letting me know -
Mg, I am postmenopausal so you may be correct about premenopausal. So confusing!
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I had a 3mm positive node and was able to have the Oncotype done back in 2010 but I did have to request it. If my score had been high I would have done chemo. It was a 20, and I decided not to have chemo after the onc said it would only give me a 3-4% benefit. I felt the risks to my health of doing chemo cancelled out that benefit.
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After a lot of research, I am also refusing chemo and tamoxifen. I am stage IIa, tumor 3.5 cm, and no node involvement. My Oncotype score was 21. If you would like to chat please private message me and I'll give you my phone number.
I feel that the long-term effects from chemo will outweigh the benefits and I am determined to focus on getting well after my surgery. It seems that the side effects of chemo are down-played by the doctors to avoid scaring people out of treatment. Also, I have a resource to help me with supplements and dietarty changes to reduce my risk of recurrence.
It's a difficult decision...many sleepless nights spent thinking about the statistics but i am very comfortable with my decision. Once you made up your mind either way, never look back! -
Moonpie39... the Oncotype test is done with the underlying assumption that you WILL be taking tamoxifen. So, your Oncotype test results are predicated on that fact. If you don't take tamoxifen, as well, then your risk of recurrence may be higher. Please check this information with your treatment team to be absolutely certain before making a final decision to not take the tamoxifen, in addition to not doing chemotherapy.
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Hi all, sorry for the late response! I got to see my MO finally last week for the first time since she suggested chemo. I went to see her by myself and we had a long talk about my concerns, weighed the pros and cons etc. She said she still stands by her recommendation for chemo however she does see where I'm coming from feeling so strongly against it and she won't push me into doing it. She did order the oncotype and we'll get the results in a couple weeks. In the meantime, she told me to move forward and get my MX scheduled and she just asked I wait to make a final decision on chemo which I agreed to do.
Last week I had a pet scan followed by a mri 3 days later. The pet showed a suspicious lymph node around my pec muscle (the mri didn't show it) and I'm having a biopsy for it tomorrow. I agreed to go to an educational class on chemo so I better understand it and I told her if either my oncotype comes back high or that lymph node is cancerous, I will reconsider everything. She said without the oncotype she estimates my risk of recurrence to be around 10% higher without chemo and tamoxifen only. She said sometimes chemo can cause more harm than good for patients that feel the way I do about it and 10% is relatively low so it's really a personal decision.
I'm very relieved she has agreed to oncotype me and I feel it will really help make the final decision. I truly admire those who have made the decision to choose chemo. It's really an amazingly huge emotional and physical commitment!! Just since my lumpectomy 5 weeks ago and endless appts for scans, test, and follow ups, I've barely had time to work more than 2 or 3 days a week and def not had time to do the hobby type things I love to do like working out and personal training that occupied most all my free time before this. It's so overwheming to consider 6 more months of treatment. There's a good reason they use the word survivor and I feel that the ones who chose chemo deserve that title most of all!
Has anyone else here tried the alkaline diet? I've been doing lots of research on it and trying to follow it but I've not talked to anyone else that's using it.
Best wishes and hugs to all of you!! -
amyi,
Nice to hear back from you. I am sorry to hear about that lymph node - fingers crossed that your biopsy goes without a hitch and that you get some good news soon. I think you are wise to put decisions on hold until those results come back.
It sounds as though your onc is a thoughful physician who cares about your concerns. That's great that she is listeing. Her care and counsel should help to make this so much easier.
Paws crossed for good biopsy results!
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Everyone's posts have been so helpful, thank you! I am meeting with my oncologist today and was set up for my first chemo infusion tomorrow. My decision is no chemo, no tamoxifen!
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Hello Moon- it will be interesting to hear what your mo says about your decision. Please let us know. I'm one of th lucky ones that really had no chemo issues, thankfully, and so far, no residual effects.
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Momo,
So glad to hear you sailed through chemo with no bad effects. My oncologist called me last night on his way home with the idea that he has been 'too nice of doctor' who was not persuasivie enough to convince me to do the chemo. He is respectful of my position, but also concerned. However, he wants to help my with 'alternative treatments' and set me up with a dietician to follow the WINS trial diet. Google it--it outlines how to decrease fat intake thereby reducing change of recurrence. Also, he says there are several convincing studies that show one baby aspirin per day may be effective.
I'm also taking lots of supplements recommended by a researcher in pathology at UVa. Melatnoin, Vitamin D3. flax oil, etc, His wife was dx with stage III BC 10 years ago and his research has been extensive. After all, his wife's life was at stake. i trust him implicitly since he looks at cancer all day under his microscope and understands how everything reacts on a cellular level.
Can you guys not see my dx? I don't know how to fix it. For all who are curious, it's stage IIa, grade 3, no lymph node involvement. Tumor size 3.5cm. Double mastectomy on Dec 6th. -
I'll weigh in on the chemo argument. I simply wanted to know in my heart of hearts that I had done EVERYTHING the first time around to eradicate this beast. I wanted that 3-4% chance. Mine was ILC, which is harder to detect, and I had 6 positive nodes, 2 C, grade 1 stage 2-something.
Lumpectomy, chemo (2 months DD ACx 4) and 3 months taxol weekly, then 6 weeks of rads-- 33. Of course I'd have rather been lying on a beach in Hawaii rather than go through AC and lose my hair and a bunch of weight, plus feeling like I had the flu for about 3-4 days each time--but I got through it. The taxol gave me no problems at all other than low white count, causing me to delay one tx and get a neupogen shot or two. Rads were more of a grind since I had to go 5x a week than anything else.
I did so many things that were easy to do to allieviate side effects from chemo, and for the most part they worked, many of them I read about here.
I finished chemo end of March 12. Hair was already grown in enough I could stop wearing a wig. Now it's nearly 6" long. I feel great now. No ill effects. No, I don't have heart problems, but I might have gone forward with it anyway and asked for extra monitoring from a cardiologist.
Finally, I had to change my mind about chemo before I started: not to see it as poison, but to see it as a lifeline, my weapon, something that would be temporary but would give me every opp to cleanse my body of any hidden cancer cells. After I embraced chemo as best I could, it seemed to be the right thing to do.
Good luck to all of you with your decisions.
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AmyI - Something to think about.....how about asking your MO, (or get another opinion) regarding the type of chemotherapy administered. It sounds like you are going to have AC + Taxol (correct me if I'm wrong). Adriamycin is a pretty strong chemo drug (red devil) and is harder on the heart. I had a friend who just went through the same ordeal that you are going through. Did not want chemo. She is young at 35, grade 3, but negative nodes, larger tumor at 4 cm, and she ended up getting two opinions. The second oncologist was more open to her thoughts and misgivings about chemotherapy and ended up agreeing to give her four treatments of Taxotere and Cytoxan. Something to think about???
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Hi all, hope everyone is doing well. I saw my MO today and things got more confusing. I had a biopsy on a suspicious lymph node in my upper chest that came back as cancer which changed my stage from 2a to 3c. I also got my oncotype score today and it's low at 14! So now she's saying since my lymph node came back cancerous, my onco score is void because it was under the assumption I had no positive nodes. She wants to see me again in 4 weeks with a final decision on chemo.
In the meantime, I have my MX next week and they will remove that lymph node, she wants a CT scan of my brain, and she wants me to meet with a radiation oncologist to decide if I'll need radiation on the area of the lymph node after surgery.
I realize the positive node changes things a bit but I still don't think the onco score should not be considered at all now. At the same time...I don't want to be so stubborn it risks my life avoiding chemo. This is more confusing than ever now. My husband still strongly feels I should not do it but doesn't want to influence my decision.
I can't explain how much it has helped hearing all your stories and advice. Cancer is a different journey for everyone but it really helps to get a fresh perspective on things!! I'm back to square one praying for some sort of reasonable decision with all this.
Wildurama, thank you for your suggestion and I plan to ask my surgeon to connect me with another MO for a 2nd opinion. My onco type suggested CMF chemo which is much milder and than adriamycin and I might be more open to considering it.
You ladies are such a blessing and I really appreciate all the great feedback. I'm also so happy to see this thread is helping others in similar situations. Please keep us updated on your progress and decisions!!
Hugs to everyone!! -
amyi - So sorry to hear the bad news about the lymph node. That really does put a confusing spin on things for you.
I am curious as to why they want a brain MRI - do they have suspicion of cancer there? If so (God forbid) it might make sense to wait until they can rule that out. I would imagine rads would take on greater importance now.
Ugh....what a big drag. For such a serious illness as cancer you would imagine they would have developed a fast-track way to fully evaluate people, wouldn't you...
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Hi Amyi - I've recently decided to go ahead with chemo treatment after constant vehement and direct persuation from my family not to. They are supporters of eastern medicine and believe that diet (juicing), acupuncture, change of lifestyle, etc. would cure any potential cancer cells that escaped. I had a BMX, no lymph no inolvement and feel that chemo is the next step. I am 33 years old. I have decided to also use alternative medicine along with heavy juicing to prep my body and assist with the chemo. I wasn't a crackhead or anything like that but my diet was off and I am a high stress person.
I discussed chemo with two MO and they both suggested TCH. Since I am a believer that most MO's would want to pump me full of chemo because of my age, I researched and discussed dropping the "C", which is the more toxic of the two chemo agents, and now I will be starting Taxol and Herceptin (TH). What I'm trying to say is do your research. It is your decision and you have to live with it. Things can be modified and they can't force things on you. I believe a good MO will work with you vs. you not getting treatment at all. Good luck and keep us posted on your decision.
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Thanks Athena. I think they didn't order all the scans etc in the beginning because I didn't have insurance till Jan 1 :-/ they've been running every test and scan imaginable since my insurance started! It has something to do with where the lymph node is that made her want to order the brain scan and she said it's just a precaution. It's the only area that's not been scanned yet too because my pet scan didn't include the brain.
She said radiation is usually recommended for over 5cm but since my tumor was 4cm plus this node now, it will prob be recommended. I'm ok with a little radiation if needed so I'm preparing myself that it will probably happen.
I did finally get some good news! My plastic surgeon says he'll be able to do immediate implants without expanders since we're skin sparing and I have existing implants so that's one less thing to worry about yay!
And yes, I agree you would think they would have an easier way to evaluate people!! These scans are not fun and you would think they would be able to do a proper evaluation with one only. In the course of 10 days I had a pet, mri, ultrasound, and biopsy geees lol and now a CT and praying it's the last one for a while!!
Great to hear from you and hope you're doing well!! :-) -
I am doing well - thanks for asking.
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I was told radiation can warp the implants\skin which is why they prefer to radiate with expanders. I would discuss this with your PS if you plan to do radiation after your mastectomy.
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after being diagnosed in 1996 I said no to taxmoifan
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I refused chemo due to existing health issues and allergy / drug intolerance issues also - I was only given the choice of FEC-T or nothing........ had a gentler chemo been available I may well have opted for that but as i am a lobular cancer person (or rather was) I think the hormones are almost more important....I also had 7 nodes affected but no LV infiltration
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Amyi......just having a node does not invalidate the oncotype, but, the postition of the node may or may not be significant. If it's not a sentinal node, the prognosis might be different.
14 is on the low side, but not so low that chemo would have no benefit.
I did opt out with a 22 and one node, but it was the sentinal node.
I feel like asking for some chemo options that don't include A is a pretty solid choice. It seems like they are slowly moving away from giving that for early stage cancer.
Good luck...
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Amyl - I went direct to implant too. I had neoadjuvant chemo, and before I had surgery, I wasn't sure if I was going to need radiation therapy either, (I had no evidence of nodal involvement on US, CT, MRI and PET) so I wanted to proceed with direct to implant. My PS said that he would go ahead with the direct to implant if that is what I wanted, and I knew going in that if I had 3 or more positive nodes, I would more than likely be recommended to have radiation. In the end, I had two positive sentinel nodes (one micro and one positive) with a full ALND. Because I had the ALND, I opted out of radiation therapy. I had two consultations regarding radiation and one said "Yes" he would radiate me with two postiive nodes and the doctor from my institition said "no" that the risks outweighed the benefits. I went with the RO from my team, and decided not to do radiation. I had no other negative prognostic indicators for radiation other than those two positive sentinel nodes.
So, I guess what I am trying to say is it is possible to have radiation with implants.....its not the best scenario, but it can be done. There is a very good chance that you would have capsular contracture of the implant - I think its like 40% risk of it happening. But, I have read and know of some docs that radiate with the implant.
Just one more thing for you to worry about it.....ugh!! I know the feeling. Hang in there. It sounds like you are getting all your ducks in a row though. One thing at a time......
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Hi Kayb, she didn't really tell me why CT instead of MRI. I "think" it's because she wants the full body included but I'm not really sure. And the node is not a sentinal, I'm not sure what she called this one but I only had a couple cells on one sentinal node which they removed during lumpectomy. They were really against the Oncotype from the beginning and assured me my score would be very high so there was no point in doing it so I was very surprised it came back kinda low!!
Wildurama, I'm not sure about the radiation with implants either. I see the RO the day before surgery so hopefully it doesn't change the surgery plans!
How did your MO respond to those of you that refused chemo? Mine was very strern about it at first but now she's saying it's still her recommendation but if I were 60 instead of 37 she would not recommend it for me and she wants it to be my decision. I've researched online and in Canada and Europe, they do not recommend chemo for pre menopausal, estrogen positive patients regardless of stage or grade and do ooph and tamoxifen instead. Tamoxifen and chemo is a US thing only. So confusing... -
Not sure but you might check on the Canadian ladies threads - an awful lot of them have received chemo...
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Thanks Kayb for the link. It was actually very interesting because my stats didn't change between tamoxifen only to tamox plus ooph!
I've been looking on the internet for info about how the onco score changes after lymph node involvement but can't find much useful info. Most articles are saying it can still be done with some lymph node involvement but I can't find much about if the same score is still valid if nodes are discovered afterwards. I'll let you know if I find something :-) -
gosh I wish I had my old report
the node positive chart is based on a much smaller study than the node neg, so you have to take the numbers with a grain of salt....
but basically chemo doesn't work any better just based on node status...in fact if I remember it's even a little clearer on the node pos chart that very low oncotype actually has a worse outcome with chemo---
look at your KI67...one theory is that women who get mets despite low oncotype have a high ki 67
but....the mortality numbers are kind of alarming with more nodes involved...I am trying to remember if it goes up to 10 or 12......
it's a tough call and I did turn down chemo, I think though with your stats I might have done it, but it is up to you
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Hi Cookiegal, what's my ki67? Do you know which type of report it would be on?
I saw my GS today. She said she can't get to that node during surgery and radiation will have to take care of it. She didn't seem very concerned about it. She also said she won't do the sparing on the right side so that's a drag... She said the reconstructed one will look almost identical to the other one but it'll be a while after surgery before they get to that.
She did tell me radiation after implants won't be an issue because they're using the aloederm skin graphs during reconstruct and that prevents most any chance of damage, infection, or capsular contraction thank goodness!
She looked at my oncotype report and I showed her where it said I would gain 0% benefit from chemo and she said she felt like I absolutely still need it because of my age. She said she didn't think the positive node would actually change my score but any patient she has under 50 and over 2cm automatically gets chemo. I may be naive or ignorant but I just feel that's not a good enough reason! I don't see what the point of the oncotype is if the Drs act like it's insignificant if it doesn't go along with their original recommendations. So I had planned to have her refer me to one of her MOs for a 2nd opinion then decided there's really no point since she pretty much already told me what they would say. I think I've really reached the point thru prayer and research that I feel at peace about choosing no chemo and will not have regrets regardless of what happens later on. I've struggled over the decision long enough and I have always felt when faced with tough decisions, to go with your gut instinct and move on
Do you mind if I ask how your team responded to your decision to not do chemo? -
Re treatment in Canada: When my path report came after my left mastectomy and SNB, I had one positive lymph node with micromets. (I am stage 1 grade 1). That changed the game completely, and 4 Taxotere/Cytoxan chemo treatments were recommended, as well as 25 rads. I was so upset that chemo was recommended, but my onc convinced me that it was necessary as a precaution, because the tumour was also lymphovascular, and rogue cells could have escaped. So I grudgingly agreed, and it was not so bad. No walk in the park, but I know that I've done everything available to me to prevent a recurrence. Did rads too, now on Tamoxifen, and doing well.
SpecialK, you are right. Most of the Canadian women on these forums have received chemo. If there is a positive lymph node and/or lymphovascular invasion, that is the current protocol.
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