Triple Negative, Stage 1 Thinking NO CHEMO
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Hi,
I've learned that it is better not to offer advice, but to relate facts and once a decision is made, only look forward --- no regrets. I was diagnosed with TNBC in June, 2016. I had a lumpectomy, told there were clean margins and no lymph node involvements ... early stage 1 ... I forgot the size, but it was right at the borderline of whether I should have chemo or not. I did NOT want to have chemo. I got 3 different opinions .... all pointed to chemo w/radiation as proper protocol. The oncologist that I finally went with said I was "right on the border" of not having to have it. However, he upped my chances significantly of non-recurrence if I had it, so I did. I had 4 rounds of AC followed by 12 rounds of Taxol. I am currently on radiation treatment 8 of 20. I tolerated chemo well, but my biggest fear of a side effect of heart interference was realized with an EKG last week .... now I'm on my way to see a cardiologist. It may be something that improves with time away from chemo, but I did have chemo-induced heart ramifications. Would I do it all again? Yep -- I'm not looking back. Seek support, do everything they tell you, and find any little helpful hints to get through it .... my life savers were taking Claritin D with my Neulasta during AC and taking L-Lysine to avoid mouth sores throughout chemo. I had a little neuropathy which already seems to have disappeared. My hair and eyelashes are growing back but, thankfully, painted on eyebrows are "in" because I'm still having to do that!
Good Luck --- feel free to contact me ... I'll help with anything that I can!
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had a lumpectomy in march2017 when my surgeon put the dye in to check the nodes it stopped. He pulled out another tumor.I had to go in a week later for mastectomy, pathology came back as 2.7cm triple negative and a her2 nu 1 cm no nodes involved. Went to fox chase in Philadelphia to see how to treat, they said if I don't do chemo I have 80% chance it won't come back, if I do chemo that number will come up to 90% that's a 10% difference. Putting piosen in my vains is just not right.Robin Roberts of abc news had tnbc and ended up with bone marrow cancer from her chemo treatments for tnbc, and you can get cancer of the blood a bad heart from treatment down the road..if your nodes are involved then go all the way with chemo, but no node involved maybe, ask for a pet scan like I did, that was fine to.I have to make a choice soon scary!
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had a lumpectomy in march2017 when my surgeon put the dye in to check the nodes it stopped. He pulled out another tumor.I had to go in a week later for mastectomy, pathology came back as 2.7cm triple negative and a her2 nu 1 cm no nodes involved. Went to fox chase in Philadelphia to see how to treat, they said if I don't do chemo I have 80% chance it won't come back, if I do chemo that number will come up to 90% that's a 10% difference. Putting piosen in my vains is just not right.Robin Roberts of abc news had tnbc and ended up with bone marrow cancer from her chemo treatments for tnbc, and you can get cancer of the blood a bad heart from treatment down the road..if your nodes are involved then go all the way with chemo, but no node involved maybe, ask for a pet scan like I did, that was fine to.I have to make a choice soon scary!
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how are you doing now? Still trying to decide what I'm going to do as far as chemo.
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I have the palb-2 gene I wonder if I do chemo if it can activate more cancer in me! Scary!
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i am on the borderline and half of the docs in my practice leaned to chemo and half to no chemo and left the decision to me. I had a 4mm TNBC with no nodes. Had BM. Anybody have thoughts. I am scheduled to start chemo Monday but sitting squarely on the middle of the fence!!!
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I am new to posting. I am not one to like doing this sort of thing but I have found these post so helpful to me in this new position. So here goes.. I had a mastectomy left side last month. Path came back with Stage IA no lymph node involvement and clear margins. I thought I was pretty well satisfied when I was told no other treatment. Talking with the Oncologist she checked with lab and said PR/ER negative so no hormone therapy. At the time I knew of the HER2 but thought if she didn't mention it I should not either. I think I understand TNBC a little better than I did before this all started and although I have the specific question in to my care manager, I think the fact the oncologist did not discuss any other treatment with me, indicates I most likely have my answer. I am thankful for an early stage diagnosis but any information left out makes me anxious.
I see that even in the early stages many on this forum have done, or are doing,or have been recommended Chemotherapy. I am concerned this was not discussed with me and would like input on seeking more test, more opinions or general. Just really don't know where to go from here. Thank you all for posting such good information.
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In my opinion, the oncologist should provide you with a copy of your pathology report and explain specifically why she didn't recommend chemotherapy. For example, in addition to being Stage I, your tumor may have been Grade 1, indicating it wasn't very aggressive. The doctor needs to consider the risks and benefits for your unique situation, but it's very reasonable for you to ask what specifically led to her recommendation and why she didn't think more aggressive treatment was appropriate. For example, if someone had existing heart issues and diabetic neuropathy, chemo could easily exacerbate those conditions. You could also get a second opinion. It might give you more peace of mind, but it will create inner conflict if the two opinions differ. This stupid disease doesn't offer a lot of easy answers, darn it!
Lyn
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Thank you Lyn. Yes, I guess I didn't say the tumor was grade 2 and maybe that makes a difference, still I would like to have the recommendation discussed in detail. I have a request in to have another appointment with her, but would really like to find someone that is interested in the TNBC aspects that has experience treating people with this condition.
How do I find someone maybe in my area (I am in Oklahoma) or maybe some other area, that I could get a second opinion from? After I had my biopsy results I call a few places and discovered it is very hard to just call the main number of some center and accomplish much. I think I should do something I just don't know how to go about it.
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Hi everyone. I did my first round of TC today. I am so glad I made the decision to just do it. I believe it will ease my mind some in the future therefore giving me a better quality of life. So far I am wired from the steroids, sometimes nauseus, and this IV hurt a bunch (no port) otherwise I am okay.
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Dear all,
I am asking myself if the guidelines consider tumour size before or after biopsy. Biopsy takes away some mm of the original tumour size. And maybe these mm are important for therapy decision. My tumour was 10mm when detected. After biopsy they removed a 6mm tumour during lumpectomy and that is the size my path report states. With 10mm they will consider chemo for sure, with 6mm maybe not. In stage 1a this is maybe important to know on wich tumour size the decision is based.
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Bissa, it's not a substitute for a doctor's input, but you might find this site of interest.
http://www.predict.nhs.uk/predict_v2.0
If your oncologist thinks your survival odds are very good or she perceived above average risk from chemo, that could influence her recommendation. She doesn't make money from recommending against chemo so at least there isn't a financial motive. ;-) One thing I discussed with my oncologist is that she will (hopefully!) follow me for years so sees the long term consequences of patient's treatment while radiation oncologists mostly see the short term issues, then refer patients to a cardiologist or pulmonologist and don't deal with permanent side effects. That may make the former more cautious in balancing potential benefits vs. risks.
For a second opinion, perhaps ask your surgeon for a recommendation. Doctors often want to refer within if they belong to a group (for example, Texas Oncology, Baylor or Texas Health to the south of you), but they'll usually share outside names if asked. Your general practitioner might be another source.
Lyn
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so confused....just diagnosed with stage 2 TN..2.3 cm tumor...OC recommends 4 treatments of adjuvant chemo...then surgery. I'm leary of the chemo treatment. It's scheduled to start next week ....
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Margaret 67 I too start next week. Just got my PICC line in and had some scans done. I'm more worried about the outcome of the scans then the chemo
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I have PET scan and MRI with contrast in the morning... I'm worried too...hope my nods are clear
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My sister and I were both negative for BRCA 1& 2,. She had breast and ovarian cancer. I had breast cancer twice. In 2015 I found I was positive for PALB , so was my sister. When MRI showed cancer in other breast I opted for double mastectomy. Had chemo, had implants, but one got infected following year, so I had them both removed. Am living flat now.
PALB gene also has pancreatic cancer component, and male breast cancer. My genetic counselor said I should inform all of my first cousins about my PALB positive. I'm also triple negative.
I'm just living my life, make sure I'm monitored for pancreatic cancer, taking Arimidex, try to eat well, exercise, enjoy my retirement years at 65. Not much else I can do in life. I don't obsess over future.
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sunnyspot, I just read your post from January and you have encouraged me so much. I found out on Sept 8th that I am TN. July 18, I had a lumpectomy for Grade 3 Invasive Ductal Carcinoma, and High Grade DCIS with clear margins. On Wed., Sept 13, I had Sentinel Node Biopsy. Surgeon told me he fully expected it to be clear, and recovery room nurses told me he only took one node, so now it is a wait for results. I am fighting a battle about not having chemo, because I am in my 60s and a diabetic. Your positive approach will help me to reconsider. Thanks.
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Due to the size of my original tumor my doctor recommended 8 cycles of chemo [4 FEC followed by 4 of Docetaxal] Although the thought of chemo was a little scary I did everything my doctors suggested. I am now almost at 3 years in remission, and I have no regrets.
I would do all of it again, without hesitation.0 -
RTChris, Hello, fellow Canadian. I live in S. Manitoba. I am so thankful to read your post today. I saw my surgeon today and, though there is still one test to be done on my Lymph Node Biopsy, he seemed confident in telling me that I am Stage 1, Grade 3, NO Node Involvement. He didn't specify A or B for Stage 1, but the best I was hoping for was Stage IIB and I really expected it to be Stage III. The referral to Cancer Care will be sent tomorrow, and I don't know how long I will have to wait to go to Winnipeg, but apparently the Triple Negative Status will require that, though I have been told treatment will be in Brandon. Meanwhile, I will be booked for an Abdominal CT Scan and a Full Body Bone Scan, also in Brandon, so it sounds like a busy time ahead for me. I am glad you are close to three years' remission and have no regrets; it really gives me hope that maybe I can get through Chemo after all. i wish you all the best of luck for the future and hope the cancer NEVER comes back. Hugs.
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hi our diagnosis sounds similar. Are you still cancer free?
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Motherofall6. I agree that our diagnoses are the sam. After all tests ordered by the surgeon and the oncologist came back negative, including bone scan, chest – abdomen – pelvic scan and MRI, I was declared NED Or no evidence of disease. I did refuse chemo but will be starting rads next week. The radiation oncologist told us that it doesn’t mean I don’t have cancer cells, but they have to be at least a half centimetre in size before they will show up on a scan. My surgeon had told me I would not be eligible for a PET scam because my tumour was very small and my stage is one. I know that triple negative is harder to treat, but if the cancer recurs and depending on where, I can always change my mind and do the chemo. Are you going to do chemo? Or just riads? What ever your choices are, I hope you will do well with them And I will keep you in my prayers.
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my os said I should do both chemo and radiation 😒 when will they send me for those scans , I want to know that nothing is in my brain lungs etc tc I will keep u in my prayers too
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Motherofall6,
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Hi 53nancy I am so happy you found my post helpful! Wondering how you are and what you decided to do about chemo? I am nearing my 5 year cancer free anniversary and I just can't believe I am here, I made it and I can soon consider myself "cured". It is such a scary, out of this world experience and I wouldn't wish it on ANYBODY!!! It is easy to breathe now and feel more secure but it is a bumpy and stressful road. I can relax and not spend most of my time obsessing about cancer. Yes, we spend lots of time worrying and coming up with all kinds of horrendous scenarios but then the 5 year mark comes along and you realize that cancer hasn't been the main topic of thought and conversation in a long long time and how GREAT is that?! Life goes back to some kind of new normal and continues. I wish they could find a cure so nobody has to suffer and go through this. Especially something needs to be done about recurrence and metastatic BC because that is the most frightening of all......
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Congrats sunnyspot
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sunnyspot, I am so glad you are doing well. I am too. In the end, I refused chemo, but did 16 radiation therapy treatments from Nov 20 to Dec 12. All my scans had been negative for cancer and I have no regrets about refusing chemo even though many of my family and friends thought I should. On Wed I am to have a bone density scan to check fior Osteoporosis. On Tues I have bloodwork done and Mon the 29th we will have a telehealth conference with the Medical Oncologist and I am hoping for all good news. On Feb 1st I see the Radiation Onc and he will sign me off back to the Med Onc. I am following a healthy diet and walking, mostly on the treadmill these days. I will try not to worry much about recurrence but be prepared and deal with it if and when it happens. Take care!
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Triple negative, grade 3, stage 1, clear margins, no lymph node involvement! 70 years old.
Why such aggressive treatment? I am so afraid of chemo. I decided to start radiation next week and I'm hoping that will do it. But two doctors have recommended chemo as well.
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Trubanoel, I don’t know the reason for aggressive treatment either, and I did not go with chemo. All tests and scans were negative for cancer and when I saw my medical oncologist and she told me there was no evidence of disease, I told her I would not do chemo. She accepted my decision, and asked me if I would leave the door open to reconsider if there is a recurrence, and I said yes. I did do 16 radiation treatments and am almost completely healed from that now. It has been six weeks since I finished. I had blood work done this week and will have a Telehealth conference with the oncologist on Monday. At this point, I am not expecting any negative news. Do your research, go with your heart, and do what is most comfortable for you. I am following a higher protein, healthy diet, keeping my calcium and vitamin D3 levels up and lots of walking. I am not worrying about recurrence until it shows up, if it does, and I will deal with it then. Good luck in your decision making.
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Trubanoel - how big is your tumor
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Tumor is 7mm.
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