Share with others who have ER-/PR-/HER2- breast cancer.
Posted on: Feb 13, 2016 09:07AM - edited Feb 13, 2016 09:08AM by KPittman
I'm 44 years of age just recently diagnosed with cancer. My oncologist recommends carboplatin & paclitaxel chemo. After much research, I'm looking for alternatives to chemo. I am a PALB carrier and I'm not sure chemo would add any benefits to my situation. Is there anyone else that could shine some light on this for me? I know every individual is different, I'm just curious as to how many (if any) triple negative individuals did not do chemo.Log in to post a reply
Posts 61 - 89 (89 total)
Feb 1, 2018 12:04PM VLH wrote:
Trubanoel, did you decide about chemo?
Feb 17, 2018 11:14AM Trubanoel wrote:
Thanks, 53Nancy. I've completed 13 of 20 rad . treatments as of today. I'm still thinking no chemo but am conflicted. I was told by RadOnc. that my decision would be respected but that I'll need to make that decision within a few weeks, though I'll have to ask her why. It just seems too aggressive and I am worried about long term side effects.
My dx sounded the same as yours and I'm only a couple of months behind you as far as treatment. I'll be following you. I also will try not to worry about recurrence right now. I'll deal with it if or when it happens.
Glad to hear that you are doing well and are happy with your decision. Hope all goes well in the future. Best wishes.
Feb 18, 2018 06:14PM 53nancy wrote:
Trubanoel, good luck with your rads. If I had said yes to chemo, that would have been done first. Radiation would have been considered the "mop-up" afterwards. My tumor was 1.2 cm but the DCIS was 2.2 x 2.1 cm. the tumor was within the DCIS mass. They told me they got it all out with clear margins so I have to base my decisions on the info they gave me. That said, my MO told me that no surgeon would ever admit not getting clear margins!! My narrowest one was 0.1 mm. So, just taking things one day at a time
Feb 22, 2018 06:13PM - edited Feb 23, 2018 05:33PM by VLH
Trubanoel, it's a difficult decision and there are obviously no "right" answers. It might be helpful to guesstimate how much benefit chemo is likely to provide, statistically speaking. This site might prove helpful: http://www.predict.nhs.uk/predict_v2.0.html
I'm very grateful to be alive and have no evidence of disease thus far; however, if I could turn back time, I wouldn't do chemo myself. The estimated benefit in five-year survival for me was about 6%. Unfortunately, I have developed neuropathy in my hands and feet. Even after a month of extensive physical therapy, I flunked all three of my balance tests. I lost grip strength in my hands to an extent that I had to have someone open a bottle for me at work this week, I drop things often, I struggle to open the tailgate on my van & a rubber grippy must be at hand constantly in the kitchen for all jars. Lifting the little safety tab off a gallon of milk this morning nearly had me in tears. Although an echo and EKG didn't show anything alarming, throughout my entire chemo course, simply walking down the hallway of my small home would elevate my heart rate to 100 bpm accompanied by shortness of breath. I basically lost six months of my life because I was so debilitated during and for a month after chemo. I'm still not at my former level of fitness in terms of walking briskly making my heart race and my breathing becoming labored despite being nearly a year out from my last chemo treatment. I should see a cardiopulmonologist, but I'm broke and so sick of doctors that I can't make myself do so. I should note that my experience is NOT typical. My friend had TC chemo with minimal issues & was able to to return to her work and leisure activities in the expected timeframe. Note that anyone who has chemo will have an increased risk of cardiac issues and an elevated fall risk for the rest of their lives. On the other hand, one can't discount the improved odds of survival with chemo and the chances of many severe side effects are small.
Your personal situation will make a big difference . For example, if I had a grandchild due to graduate from college, I would likely risk congestive heart failure in order to increase my chance of being at the ceremony, even if it was in a wheelchair. In my case, the ability to be self-sufficient and live independently was paramount, yet I felt compelled to have chemo since there is nothing available to the triple negative community in terms of targeted therapy. My oncologist, who had the most to gain financially, never pressured me about chemo. In contrast, the nurse of the breast cancer surgeon I saw at a major NCI cancer said the doctor wouldn't even do my surgery if I didn't do chemo since it, "wouldn't be in my best interest." The surgeon who actually performed my lumpectomies also made it seem like I would be giving up hope if I didn't have chemo.
If you have chemo, you'll know that you've done everything possible to avoid a recurrence and there is value in that. You just have to balance that versus possible side effects. I wish you peace with your decision, whatever it may be.
Jun 26, 2018 08:15PM cmandtp wrote:
hi my identical twin just diagnosed triple negative, stage 1, 8mm tumor no lymph node involvement, not braca positive.
does anyone know the ASCO.ORG guidelines for chemo recommendations for triple negative breast cancer? it is so confusing to navigate the site. I want to have all the scientific recommendations/information before we do the lumpectomy. thanks in advance for your replies.
Jun 28, 2018 05:50AM - edited Jun 28, 2018 05:57AM by weimlover
Jul 3, 2018 03:45AM Vicki86 wrote:
hello, im Vicki 40 yrs old and just diagnosed with TNBC. Im wondering if chemo will do more harm than anything else.Im here for you but honestly i cant help because i just started myself.But i have an endless amount of questions for anyone whos been through this. Very scary and so many different opinions online it gives me an actual headache. I hope you get ur questions answered.Bless you.stay strong.
Jul 3, 2018 05:50AM moth wrote:
Vicki - some of the things which change recommendations are:
your age; the type of cancer (is it IDC or something else?), the grade of the tumor; whether there is lymphovascular invasion; whether there is lymph node involvement. If you give your details or post your dx in your sigline, we can offer more nuanced comments.
Breast cancer likes to come back. Not always, & in fact the majority of people will not have a recurrence but it's hard to predict who will recur, and tests such as Oncotype do not work on TNBC so all we can go by is large population stats.
I can post some of the statistical tools which can show the probability of it coming back.
Remember if it comes back in the breast, that's still potentially curable. But if it returns metastatic, that's not. TNBC have no therapies to keep it from coming back (like the tamoxifen and AIs for estrogen positive tumors). Chemo and rads are pretty much the only tools in our toolbox.
Jul 3, 2018 06:00AM - edited Jul 3, 2018 06:02AM by 53nancy
Vicki86, I can't help you with questions about chemo; I just felt I would do better without, but left the door open to reconsider.My radiation went well and so far I am good, after most recent scans. I have seen my oncologist in Apr, June and will again in Aug for blood work. I will keep you in my thoughts and hope you find the answers you need. There is a tremendous amount of support on this forum and I hope you will find some encouragement from it, as many of us have had. Sending hugs
Jul 3, 2018 06:04AM 53nancy wrote:
Moth, I would be interested in seeing those statistical tools, too. I was told numbers but never given material to read for myself.
Jul 3, 2018 06:34AM moth wrote:
or Predict 2.1 http://www.predict.nhs.uk/predict_v2.1/tool
(same results because it's all based on the same data set. The new one just seems to have more ways to visualize the results).
ps - - careful entering the size of the tumor. Predict wants it in mm and Lifemath wants it in cm. I scared myself badly entering mm by accident into lifemath....
Jul 3, 2018 07:25AM 53nancy wrote:
Mioth, thank you for the links. I was told in February that I only had 4% chance of recurrence, but the first time I met that doctor (RO), he said that would be with chemo, which I didn’t do, but risk was higher without it. Also, the first time we saw him, he said I would never be declared free of cancer because there would be cells too small to be picked up on a scan. Last time I saw him, he said I was cancer free. I guess I prefer the term “no evidence of disease”. It helps to remind me there COULD be recurrence rather than believing I’m “cured”.
I noticed your Oncotype showed you as TN, but it was different from your Oncotype, and you did chemo. How did that go for you? I didn’t do chemo but it is an option if there is recurrence. Oncotype testing isn’t done in Manitoba, I was told
Jul 3, 2018 07:54AM moth wrote:
I was told right away that triple negative is considered high risk to recur.
British Columbia only started paying for Oncotype fairly recently. Before that they told people they'd have to pay for it themselves if they wanted the test. I qualifed because at the time they thought I was still ER+. Oncotype of course doesn't work with triple negs anyway so my results all came back with a big black box saying "not validated" but I'm so glad we did it as it did change our treatment plan.
Fwiw, your Manitoba guidelines are here. P. 20 talks about risks. Triple neg & grade 3 are each risk factors that push us into the high risk to recur. https://www.cancercare.mb.ca/export/sites/default/...
My MO was going to recommend chemo even before the Oncotype came back, because of the Grade 3 and the single hormone receptor. Once we got confirmation that I was essentially TN, she changed the recommended chemo protocol and upped me to AC + T.
I'm not done with chemo yet. Three weeks of taxol to go, then rads.
BTW, I think I know where your RO got the ~ 4% thing. This is a separate calculator for benefit of radiation post breast conserving surgery.
I think ROs are looking at a different set of data and that might not be the whole picture. The other calculators are broader.
Jul 3, 2018 08:08AM 53nancy wrote:
moth. thank you again for the links. I had repeat scans done in May and June because of a concern Regarding a rise in tumour markers which cropped up in my April blood work. I saw the medical oncologist on June 18, and the scans were clear. So, no evidence of disease. She did repeat blood work that day, and the tumour markers are slightly down, and she is repeating that blood work in August. She says that if they are up, she will order a PET scan. When I said to her that my surgeon told me I would never be considered for one because of my early stage, she said that it was high grade. That same day I met up with some of my nursing friends in Winnipeg, and they tell me that in their opinion she is the best oncologist I could have hoped for, and that if she orders a PET scan, I will likely got it She did re-iterate that she felt I should have done the chemo, but I am still comfortable with my choice not to given that I am diabetic, have osteoarthritis throughout my body (discovered in October last year), And a tendency to anemia. We did leave the door open to doing chemo in the event of recurrence, and I am doing everything I can to be as healthy as I can be, and can honestly say that I feel much better and stronger than I have for a very long time. July 14 will make it a year since I had my lumpectomy And September 9 is when I found out about the triple negative status. My oncologist tells me that she will repeat the scans at least once a year, and that her year narker it’s October 30, which is when she first saw me.
I do hope that you get through the rest of your chemo journey without difficulty. How long will you have to wait for radiation, and do you have any idea how long that will take. I was on the short course of 16 treatments, but was told that what made me eligible for it was my Stage, my age and the fact that I did not do chemo. Wishing you the best of luck in every way.
Jul 3, 2018 08:34AM moth wrote:
53Nancy, that's so interesting that you're getting tumor marker bloodwork and scans. AFAIK, in BC we don't get that unless there's clinical signs of metastatic disease.
My RO has recommended 16 regular + 4 boosts to the tumor bed so 4 weeks total. There apparently is a waitlist for rads in my area right now so they said it might not be until September. At this point, I just wish they'd tell me one way or the other. I'm tentatively planning a camping trip in Aug and I'm going back to school full time in September so either way I'll have to juggle things & figure out scheduling.
Such a personal decision whether to pursue chemo or not and with health comorbidities it really changes the calculations. On paper I was the model patient for chemo - fit, healthy with no other probs.... but it's absolutely decimated my bone marrow & I've struggled all along to keep my counts up & ended up hospitalized twice (5 days each) for febrile neutropenia. I don't regret doing it but it's not been easy. I read advice on these boards that really we need to make a decision and don't look back. Eyes forward, hope for the best.
I'm counting the day of my lumpectomy as my cancer free anniversary day - since that's the day they cut the sucker out & dropped it in a steel bowl. Congratulations on your upcoming one year anniversary. Wishing you good health as well!
Jul 3, 2018 12:15PM 53nancy wrote:moth, I feel for you. It was such a long drawn out process for me last Year, with an abnormal mammogram in April, a needle biopsy in May which said benign, lumpectomy In July with six week wait to confirm cancer, lymph node biopsy in September and finally the triple negative status. I did not see the oncologist until the end of October, and I didn’t start radiation until November 20th. My radiation therapist told me that I was pretty far out for starting radiation and should have been in at least a month earlier. Like you, I consider my surgery date as my anniversary day. The hardest thing was waiting so long to get the estrogen/progesterone/her status and I do feel that that added to the waiting. I do not regret Refusing chemo, and I don’t know what I will say if there is a recurrence. I No longer put all my faith in the medical system, because I fought so hard to get results when it was taking so long to do them,, and now I am very proactive on my own behalf regarding my health, and I do not hesitate to question results when my doctor brushes off my questions.
Jul 3, 2018 01:24PM VL22 wrote:
Vicki - the recommendations are anything over 5 mm for TN should get chemo.
I agree with Moth however - I’m truly one of the healthiest people I know and not only did I get cancer but chemo was very hard on me. It wasn’t during the actual process so much as after - I’m 6 months outcand still having issues, which can be disheartening and scary. I envy those that just bounce back. I also had a ER+ tumor, so I think the tamoxifen is making my recovery slower
All that being said, I’d do the chemo all over again.
Jul 4, 2018 02:02PM 53nancy wrote:
Familywoodson1, hello. I myself and did not do chemo But I did do radiation. Another 10 days will bring me to my one year anniversary for my lumpectomy and at this point, I am considered as having no evidence of disease, but right now I am going through blood tests About every two months to check for tumor. My oncologist keeps stressing that triple negative will recur earlier rather than later, But there is not much I can do about it until it happens. If there is a recurrence, then I will consider her chemo at that time. If I can remain calm, instead of worrying about it, that may help me in the long run. It is not easy for everyone to look at things that way, and I certainly didn’t year ago. I was so stressed all I could do was cry.
Are you able to post your details. Was your tumor small? What was your grade? Keeping you in my thoughts and hope your accessing this forum will encourage you
May 14, 2019 12:59PM 53nancy wrote:
Hello everyone. I hope this finds you all having a good day. It is a while since I have been on but all I can say is life has been busy! The months go so fast
i saw my oncologist on Thursday last week and, to my surprise, she has terminated me from Cancer Care MB and I will see only my GP in future. She is sending his office a care plan about what she feels should be done over the next 3 to 5 years, but apparently he is under no obligation to follow her plan. So, after a year and a half under her care, with three series of scans and other tests, I am done. I am pleased to be considered cancer free, but still a little concerned about recurrence. If anything comes up, my doctor is send me directly to the surgeon. But now I feel that I can move forward and, not forgetting the last two years, be thankful for how things have gone.
Spring is slow to come this year, and it has been very dry, so the farmers are out seeding and keeping their fingers crossed for rain. We have crocuses blooming in our flowerbeds, with tulips and lilies now between three to seven inches high. Hubby is planning to mow for the first time this year.
Now must go but wishing you all the best and will be back soon. Hugs,
May 14, 2019 05:10PM VLH wrote:
Congratulations, 53nancy! Do you know what the care plan is so that you can identify any deviations?
May 14, 2019 05:35PM - edited May 14, 2019 05:36PM by 53nancy
VLH.They said they would send my care plan to my doctor and the nurse said it may be two months. I think the oncologist is slowing down. She is well into her 70s, and the nurse commented that things are getting to be too much. I know it is suggested I have a physical exam of breasts and chest wall, check lymph nodes, lungs, bones, abdomen (takes all of five minutes) every 3-6 months for 1-3 years, 6 months for years 4 and 5, and yearly starting from 6th year. I will be in my 70s by then. I am to have a mammogram every year. A lot of things - like bone pain, cough, body changes - I will have to watch for, and then probably have to fight for checking further. At this point, I don't think my doctor would do a complete blood count even once a year, so I plan to look into finding an independent lab to do it.
May 14, 2019 05:57PM VLH wrote:
It sounds like you have a good understanding of the plan and what symptoms would warrant further testing. I've been having a mammo of my affected breast every six months with the other breast included once per year.
May 14, 2019 06:25PM - edited May 14, 2019 06:35PM by 53nancy
Lyn, I didn't know much about breast cancer before 2017 and nothing at all about TN, but I started researching, and breastcancer.org has been about 80% of my support. It took a month to get results of lumpectomy and another three weeks before I got the TN status. I was expecting it, though, because it was taking so long to get the estrogen/progesterone status, and by that time I was calling the surgeon's office every day to find out what the delay was. I am glad the recommendation is for a mammo every year, because it means I won't have to worry so long. I think really the oncologist’s biggest concern was slightly high tumor markers and this time they were the lowest I've had. I won't miss having to drive to the big city anymore. 😊
I do believe we have to be proactive on our own behalf when it comes to information, because I think breasr cancer patients are only a small percentage of a GP’spractice. We are probably the best ones to find that information and if we can’t, then ask and ask. This is also where breastcancer.org has provided so many answers for me.
May 15, 2019 12:15PM VLH wrote:
This forum had been invaluable for me as well, Nancy. The lengthy waits for information must have been daunting. I hope that all goes well for you.
May 15, 2019 12:19PM - edited May 15, 2019 12:33PM by 53nancy
Lyn, Yes the waits were nerve-wracking but at the same time gave me time to do my research, so that by the time I met the oncologist, I was determined I would not do chemo. It did not go down well with her but she acceptd our decision and we left the door open for future consideration. Now that I am considered clear, I am even more thankful that I did not do the chemo. I have heard so much about side effects
May 23, 2019 06:31AM MountainMia wrote:
For many people, chemo is an easy recommendation for their oncologists and an easy thing for the patient to agree to. A lot of us are in a more grey territory, though. My characteristics are TN (of course, since I'm here,) genetic test negative, DCIS and IDC, both grade 3, IDC tumor 1.5 cm and DCIS spread 2.9 cm, node-negative. And I have dense breasts, and my tumor was not visible on mammo or palpable. It was found because of the microcalcifications. If not for them, I'd have had no clue.
Small size and node-negative argue against chemo for me, but other things call for chemo. My oncologist did not make an effort to persuade me and said it was my decision. He said that we know on average chemo will reduce the risk. What we don't know is which patients are the ones that benefit from it and which don't. The personal cost is HIGH. Will the benefits to me, personally, be enough to make up for it? I have no way to know, from a medical standpoint. From the standpoint of my peace with the decision, it is definitely worth it.
Now, I say that not having had a successful chemo session yet. MO first prescribed TC x 4. I reacted on trying the T taxotere 3 times in two infusion attempts. Tomorrow I'll try again with a dose dense AC regimen instead. While I could also do taxol after the AC, the MO won't push for it. My guess is I won't do taxol. Since I had lumpectomy, I'll also have 20 radiation tx.
It can be a hard decision. I wish everyone excellent health care and good information, and that other random thing called luck.