Low Oncotype, node-positive and chemo decision
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Ckat - I'm late to the thread. My diagnosis was similar to yours. Low oncotype and 100% ER/PR positive. I did unilateral mastectomy, 4 rounds of chemo and 35 radiation. My hair fell out 2 weeks after the first chemo; started growing back two months after the last chemo. My wig was stunning - complete strangers complimented my hair in elevators. Stopped wearing the wig about 5 1/2 months after I started. Neuropathy from chemo was mild for me and came on very late and didn't last long. Overall, my chemo side effects were mild to which I attribute short duration and physical fitness going in. Radiation was tough - talk to your doctor about skin care. I slathered aquaphor 2x a day and believe that helped me avoid skin breakdown during the process. I'm 11 months past my last chemo and a have a full head of super curly hair (wavy pre chemo) that I just had cut for the first time. Good luck.
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Sounds like a great plan Ckat!! All the best during treatment!
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Hi- I'm new to the group! I'm 42, Diagnosed in October when going though a required updated mammogram to do IVF (we have a 3 yo and want a 2nd child) Obviously the ICD diagnosis stopped my IVF (but we were able to do a quick egg retrieval cycle before my mastectomy surgery and will be looking at a surrogate and adoption later this year.) I also was diagnosed with a CHEK2 mutation.
My path report said cancer was found in LESS than 1mm clear margin. My IDC lump was right on my pectoral muscle sheath. They removed the sheath in the surgery. Had small node involvement- 1.7mm (micromets) in 1/3 sentinel nodes. It sounds like the cut off for chemo recommendation is 2mm. I'm about to start radiation. My low oncotyope score 10, so my MO said no chemo, but recommends shutting down my ovaries over the next 6 months then removing my ovaries and being on AI for the next 10 years.
ER+ (100%) /PR+ (90%) HER2- (yes, I know I'm lucky with this)
HOWEVER, I've heard/read some stories (here and in my CHEK2 support groups) where oncs said NO to the need for more node removal or, NO to the need for chemo....and yet sometimes it turns out there was more cancer somewhere and months/years later diagnosed with late stage advancements! I am young and healthy and i want to be aggressive to have the best chances of making this go away. I'd rather deal with it now (already having time off of work) than after we expand our family again! Has any one had this experience and how do you know your MO is doing the right thing by just doing RADS?
In 10 years I'll have a 13 yo daughter (and hopefully a 9 yo child, as well!) so talking 5 yr outcomes is frustrating. I'm talking 50 yr outcomes!
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calidani, curious what the grade of your tumor is? If it's 1 or 2 that's another reason to possibly not do chemo - these are slow growing and less likely to spread. Did your MO show you the Oncotype report? It should list the actual percent of gain from chemo. Strong ER & PR means you will respond well to hormonal treatment and it really sounds like the risks of chemo might be greater than benefits for you but I totally get the desire to throw everything at the cancer.
Have you looked yourself at the Predict calculator? This is the type of calculations the MOs consider. http://www.predict.nhs.uk/predict_v2.0.html0 -
calidani- Sorry you find yourself in this situation. I had a very similar situation, and went to Dana Farber for a second opinion, and they said no chemo as well. Even if there are rogue cells hiding, with low Oncotype, they won’t respond well to chemo, so we’d be making ourselves sick for very little or no gain. That’s my understanding. My score was 14, and chemo would have been a net negative for survival. I have a toddler, 5 Years puts me at kindergarten...I understand the fear.
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I am in an almost identical situation. Stage IIa, 4mm tumour removed by lumpectomy and sentinal removal showed macromets 3mm tumour in one node. 100% receptor positive and her neg. Grade II. Waiting for onctotype score but drs are saying depending on the score, possibly no chemo and no rad on the nodes. I am nervous. I feel like I want to throw everything at this. 47yrs old with one daughter. I am so stressed about this decision. Oncotype is not yet validated for node positive, nothing yet published. Did you have any regrets? I would be willing to do cold caps also on chemo, likely 4 cycles of Taxol unless onco come back high. Thx
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Hi Ldc1, I'm so sorry you're facing this. The Oncotype score will help with the decision. If you're feeling like you want to do everything you can, then chemo may be the right choice for you. I don't have any regrets. It was no picnic, as they say, but it was do-able. You will get through it. The main issue I have struggled with coming out of it is that it threw me into menopause at 48. So now I'm struggling with hot flashes and interrupted sleep. Regarding cold caps, I used Penguin caps and kept all my hair. I just posted pics in the "Cold cap users" thread if you are interested in seeing the before and after. Feel free to send me a private message if you have any questions about chemo or cold capping, should you decide to go that route.
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Calidani- I had posted my story on this thread early on back in October 2017. Not sure if you’ve read through the entire thread but go back and read my story as it was a long post. I had 2 of 4 sentinel nodes with micromets less than 2 mm’s. My surgeon and oncologist both told me odds were so slim any further nodal involvement. I was not comfortable not knowing the status of further nodes. I made my surgeon go back in and do ALND. Surprise 2 of 14 more nodes were fully positive and as my MO said on he phone to me bursting with cancer more so than the sentinel nodes. He said now with four nodes involved chemo is a given and set me up for A-CT. He had ordered Oncotype between my BMX and ALND and after second surgery we got those results and they were a 3. He was encouraged by this and changed my chemo regime to four rounds of TC. I then had 25 rounds of radiation as well. If I didn’t have the axillary node dissection, my Oncotype would have come back the 3, I would’ve skipped chemo as no one would’ve suggested chemo for an Oncotype of 3 and just micromets and I would’ve skipped radiation as it would not have been recommended as I had the BMX. I would’ve been sent on my merry way with those two positive nodes still there and no treatment except AI’s. That thought makes me ill. I am one of those stories... I had to trust my gut and push for the ALND. I’m so glad I did. Do what you feel you can live with and are comfortable with. I knew I could deal with an additional surgery, lymphedema risk, chemo, radiation...but I knew what I couldn’t live with and that was not knowing if anything else was lurking. Best of luck to you.0
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ckat
It is a very hard decision to make and very personal. I had lumpectomy in November and received my oncotype report in Mid December. My score was 21, in that “grey zone” making it even harder to decide. It’s in the area where it really ends up being a personal choice. I got 3 oncologists opinions and one took it to the Timor board to ask other opinions. Most responses were the same, really not sure. 2/3 oncologists I saw did say they would recommend one saying he would want his wife:daughter to get chemo with same score and pathology. My tumor was 2.7 cm, lymphovasculsr invasion, 2b, grade 3 and highly ER/PR positive and her2-. I had my first of 4 infusions yesterday. Was talking to penguin cold cap people until Monday evening, but decided to let it go. Still a very hard decision, but right for me. In all of this I think everyone chooses what’s best for themself and I support everyone’s decisions. I’ve been checking out wigs online and plan to go see some in person today. Hopeful afternoon reading about runcrb’s wig
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Teri1975, the grey area does make it exceptionally difficult--and we are faced with so many decisions all at once during such a traumatic time. Congrats on making your own decision. I found that after I made mine, I felt much better and prepared to undergo treatment. I hope that is the case for you as well.
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thx for your reply. I can see from rereading my original message my state of mind from all the typos:-) I am going ahead w the chemo. Use of oncotype on node positive women to predict recurrence is new and not yet validated. The acience is there but not yet published,I am told. And standard of care wothout that score would be chemo and full rad. Still waiting for my oncotype but my decision won’t change.
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Ldc1, I'm glad to hear you've made a decision you are comfortable with. Out of curiosity, I have been checking every so often for the RXponder study results but it doesn't seem like they'll be in for a while yet. Wishing you the smoothest of sailing during your treatment and if you have any questions about chemo or cold capping, feel free to DM me.
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Thank you. Just got my oncotype and it was 14. Which means I will likely go w 4 cycles of taxotere.Forgot to mention earlier that the node was macromets as well. Thx again for replying!
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Don't know if you ever got any replies to your questions. I was staged at 2b with one positive node and due to the size of my tumor the Drs told me chemo was really not a choice. I had the TC and my hair came back very dark and curly but boy did it ever come back thick and full .
I did have some numbness issues that went away by week 2 of each treatment . I never did rad as the dr's said not needed with 1 positive node and since you can only do Rads once in a specific area they did not want to over treat .
I hope what ever decession you made you are happy with and things worked out
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Hi, I'm new here and posting for the first time. I'm 50 yr. old, pre-menopausal. Biopsy on 5/16, DX on 5/22 with stage IIa IDC, about 2cm, grade 2, ER+/PR+, Her2-. Two nodes appear abnormal on ultrasound, node biopsy positive. Third node looks suspicious on MRI. On 5/24, met with MO and he prescribed AC/T chemo followed by surgery, radiation and then Tamoxifen (or something) for ? years. He said I'm not a candidate for oncotype testing. But when I was at Dana Farber for 2nd opinion, the MO there thought I am. I got hope that maybe I don't need to do chemo. Local MO initially scheduled my chemo to start yesterday. The local BS and MO (who both have stellar reputations and I really like them so far) disagree pretty strongly with the Boston doc and are urging me to get started on chemo. They ended up agreeing to the oncotype testing and to wait two weeks to start chemo. I need that time for my mental health more than anything. I've been overwhelmed with how fast this is all happening. I am scared, though, that waiting two weeks is a bad decision for my health, and/or that the oncotype testing will just muddy the waters, even if it's fairly low, because of my node positive status.
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Better to wait 2 weeks and be sure of your choices. If nodes are positive chemo is usually the way to go. I had 2 nodes that were positive, but they were considered micromets. Back then some doctors considered micro positive, but there were other doctors said I could skip chemo. I believe my oncotype showed 21 so I figured I mine as well give it all I had. I am so glad I did since Tamoxifen caused me to have a complete breakdown and I stopped after a week. Surgery, chemo and rads felt like more then enough treatment. It's been awhile since I had been though this, but I always feel fortunate that I went ahead with the chemo.
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Hey LoveMy4Kids,
I'm so sorry you're dealing with this. And so frustrating to have such different advice from what sounds like two very credible sources.
I'm not a doctor so take this with a grain of salt, but I think you're smart to wait on the Onco - and also smart to prioritize your mental health. I found that this whole thing has been as much of a mental/emotional challenge as a physical one.
The thing about a large academic center like Dana Farber is that they are much more likely to be super up to date on the research, and actually seeing it as it's coming in. They're also much more likely to have more data from more patients over the years, a mix of outcomes, that they use to inform their judgment.
ER+/PR+ is somewhat notorious for not responding well to chemo - that's often reflected in the oncotype score. I've seen on these boards that some women are now being prescribed neoadjuvant *hormonal* therapy for this type of cancer.
I think that some women have also gone for 3rd opinions, especially when the first two are conflicting. Is that an option for you?
Good luck! Whichever way you go, it sounds like you will have smart, conscientious doctors supporting you.
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Thanks Rockym and Salamandra, for your helpful and kind responses. I really appreciate hearing your thoughts and encouragement!
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hi, I saw your post and wish you luck, you sound like me two years ago, only difference is that I did not have the oncotype test offered. I had a fast turn a round with everything. I had a mammogram in July and told them I felt a lump, she marked it on my breast, but couldn’t see it. They brought me back for ultrasound ONLY because I felt something. It took them a little while to find the lump and two suspected lymph nodes. Due to my dense breasts it made the breast cancer hard to find, the doctor figured it had been growing awhile!
I had chemo 1st, knowing that it may not affect the cancer, but after my 3 rd dose of taxatere/cytoxan, I had a ultrasound and it showed the cancer had shrunk, by my 6th and last dose it had shrunk again. So sometimes chemo can help with HR positive cancer. Unfortunately I did not have a complete response, but it did help with surgery and my partial mastectomy. I had a few SE but still worked and exercised each day. Yes I lost my hair, but it did come back, I did lose my eyebrows and eyelashes but they came back too. We never know what life brings, but only pray that the lord will be there for us when we need him.
Good luck
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i learned a lot about decision making and cancer over the course of my husband’s stage 4 prostate diagnosis in 2013 (yes he is still with us). When I was diagnosed in late January, I resisted being rushed (certainly screwing up clinic and doctor statistics!). Had a lumpectomy in March after a cruise to Australia. Waited for oncotype even with two nodes positive. Got a second opinion—one oncdoc said chemo, the other no, based on a score of 12 and chemo “of no apparent benefit”
Thought about it, researched it. Opted for radiation in May/june, no chemo. And started Arimidex last week, again waiting to fully recover from the radiation and researching pros and cons. I am content with my decisions based on my age (66) and quality of life goals. Will I be among the 25% of women who stop Arimidex due to severity of side effects? Maybe. Day by day. One thing at a time. And I have 5 cruises booked.
Live your life. Live your life. Good luck to all.
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Thought I'd update - My oncotype was supposed to come in by June 24, but it was delayed for some reason. I had already scheduled some important summer events around starting chemo that week, plus all my doctors were just so adamant that I needed chemo, so I agreed to start on June 26th even without the oncotype results. By then I felt I'd had time to prepare mentally and practically and I felt as ready as I could be.
I didn't find out my oncotype until the following week. It is 14, which is pretty low, but in my situation is not low enough to forego chemo in my doctor's opinion. But it became a moot point because once you start chemo, you need to follow through.
Since then, I've had to have more biopsies because of things that showed up on the MRI, and it turns out that I have more cancer in a separate ductal system of the same breast. That makes it multicentric, which explains why it got into the axillary lymph nodes so early. I really think I made the right decision to have chemo even though it's definitely not a fun experience. Now my surgeon says I'm not a candidate for lumpectomy anymore, but will need a mastectomy after chemo is complete. I'm really disappointed, but I have time to wrap my mind around this new reality and make reconstruction decisions.
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Hi Lovemy4Kids,
Sounds like a rough week! It definitely sounds like you made the right call about the chemo. I imagine otherwise you'd have to wait to hear back on an oncotype of the cancer find anyway. It sounds like your doctors are on the ball and I hope chemo goes as smoothly as possible.
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