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I had a mastectomy 7 weeks ago with 2 sentinel notes removed. One node was positive with macromets, so aftet lots of staging scans which came back clear, I had an axillary clearance (all 3 levels) last week. All my other nodes were clear, and my surgeon said that I had optimal control and it was extremely unlikely to have spread. My cancer was 8/8 ER, 7/8 PR and HER2-, 27mm and my oncologist has put me forward flught the Optima trial.
Have all of you with only one positive nodel had chemo?
Forgot to say that I'll also be taking Letrozole for 5-10 years and Bisphosphonates for 2 years.
I had neo adjuvant chemo with one node tested positive at biopsy. I had chemo. Only had a partial response to chemo and had mastectomy and full clearance and found i actually had 4 node affected.
My oncologist did say that he considered the Letrozole to be the most important part of treatment after the surgery. More important than chemo.
I also know of a lady who had 12 nodes affected, refused chemo and is still here some 15 years later. She has the occasional local reoccurrence and has surgery but is adamant she won't have chemo. She had Letrozole.
I was not in this position as most of my lymph nodes tested positive for cancer (14 out of 18) so no brainer, I had chemo. But I just wanted to say to you that chemo was no way as bad as I expected it to be. It was completely 'do-able'. It all depends on your personal circumstances, but it isn't that bad as you may think. Most side effects can be managed these days. I used the cold cap, so didn't lose all my hair. I don't know how old you are, but I was 43 when I had my dx, and I was going to throw everything I could at it.
I am taking letrozole too - 8 years left and counting!
I had a Mastectomy beginning of March had two sentinel nodes removed.One node was found to have have Cancer cells under the microscope so a further three were taken and all clear.I really didnt want chemo from the start.I too done the Optimal trial but unfortunately it came back that had to have chemo.I was not happy but had to do as I felt I may regret it in the future if I didn't. I started Chemo on 22nd last month every three weeks for six sessions.
If they say Chemo do it,It's your life.
Hi everyone and thanks,
It's so hard, isn't it? I've been trawling through research papers from the last five years in the hope of being better prepared for next week. SU47, you might still be low risk as women who are low risk are randomised either way. I don't know if I'd want no chemo, even though I want no chemo as a choice! Good luck with all your treatments:) xxx
Just wondering how you getting on,I just had my second session of fec-t and it has not been to bad this time around.What was the out come of your situatation,?xxx
I was told I'd be pulled from Optima if more than a couple of nodes affected, so wrongly thought the tissue was being tested in the interim. It's currently being tested and I find out on 26th June. I'm still not sure about either choice to be honest, though my oncologist also said that the letrozole was more important. Oh, for the simple days of surgery where there was no choice and you didn't feel ill/ go bald!
I had mastectomy first, I’m in the Optima trial, I had 7/21 nodes affected. I got chemo, I really didn’t want it so was going to pull out of the trial but I thought I’d throw anything at it as I want the best possible chance of living as long as I can.
Chemo was pretty straight forward for me, no real SE’s from EC, felt well, but then lost hair, eyelashes etc with Docetaxel, got hand, foot Syndrome, some aches and pains, felt very tired last 2 treatments as not sleeping well, due to taking 8 steroids a day for last few sessions.
Now 7/15 Rads Done, I’m taking Letrozole as well.
All my nodes were clear, so it was down to the type and grade of tumor for me. I had Chemotherapy, Radiotherapy, Hormone - the lot.
I hope this helps x
I had one micromet in the first sentinel node, all the others were clear (although I didn't have many - they only found 5 nodes!) . I had mastectomy first (10cm tumour area) then chemo and radiotherapy.
The oncologist said he was as sure as he could possibly be that I was clear and that would be it, but 3.5 years later, I was diagnosed with secondaries in lungs and bones.
I think it's really difficult to make decisions on the treatment from the experiences of other people as it seems to be almost luck of the draw whether it returns or not!
Good luck with your treatment OP, whatever it ends up being...
I'm so sorry to read about the mets and I really admire your strength with something that we're all living with as a possibility every day.....
In your case it came back despite the chemo, and only one of the nodes taken being positive. That's such bad luck:(( I was reading about vascular spread (where it goes into the vessels then bloodstream without the nodes) and internal mammary glands (which they can't sample but are a likely route for some inner quadrant larger tumors). Everyone talks about the lymph nodes, but there's little mention of the other routes. I also was told and read that sometimes the cancer can slip through some nodes undetected and show further on, even in level 3. My macromet node didn't show on an ultrasound scan so they can be sneaky! There was nothing visible in my lymph or mammary nodes on thr ct scan (which they sometimes see with other patients, and would have picked up my sentinel node) and I only had 11 axilla nodes in total including level 3 (surgeons usually stop at level 2) and i read that 10 is the minimum number usually so I had a small number.
It was my surgeon who told me he thought it unlikely to have spread based on his pathology. I only had 2 sentinel nodes, so that would make 5 or 6 levels to clear undetected. He had good clearance of the chest wall too. I trust him as he's been amazing, changing his schedule to fit me in the week after I was diagnosed, pencilling me in for anxillary surgery before the oncologist said I could have it, as I had a liver scan booked to check something the radiologist and her both agreed was not related and minor, but it meant another 2 week delay after the staging scans. The day before my provisional surgery the results of the liver scan were still not back, but he thought it didn't matter as it wasn't anything to worry about and we went ahead with the surgery anyway despite her wanting to wait:)
I have still to build up trust in my oncologist, who I'll be seeing from now on instead. She's lovely, and really, really thorough at her job, but I've not seem as much of her yet apart from in relation to staging scans and the liver one She even uses the Predict test on node negative hormone cancers to check risk and advise chemo or not when women would simply not have chemo elsewhere due to nodal status!
If only I could see into the future!
I did indeed have LVI (lymphovasculr invasion), which made the disease higher risk, even though the oncologist was as positive as he could be after all the treatment.
Interestingly, the main concern with the spread to my lungs is the fact that there have been no measurable tumours, although I do have some nodules now - I have lymphangitis carcinomatosis, where the cancer cells are in the lymph/vascular system. It's not particularly common and has a relatively poor prognosis (you don't want to google it!!!) Good thing is, at the moment, it seems to be responding to the chemo and steroids, so hurrah for that!!!
Good luck for the rest of your ride on the rollercoaster...
I'm so sorry to hear about the lymphangitis carcinomatosis....:(
Thanks, this ride has been two lots of surgery followed by 4-5 years worth of background radiation in a week , 2 weeks solid in 'fight or flight' mode during staging and now by either the worry of chemo SE or the danger of no chemo. I don't think that I'd come on this ride again as it's too scary, and I want off now!
This whole roller coaster is not a lot of fun that's true and having to make life changing decisions is so hard. I'm at the same point as you in starting on the chemo (or not) but with different circumstances. I'm ER and PR negative but HER2 positive. Had only one sentinel node removed which was clear but the tumour was a whopping 117mm and had grown from not detectable to this in just 2 months and was a grade 3 with limited margins. Had a mastectomy on May 10th. Yet to have my first consultation with my chemo consultant and have so many questions.
For me, I'll probably have the chemo, which goes hand in hand with Herceptin which is specific to HER2, and understand that I have the choice ultimately but deep down I know I'll throw whatever I need to at this to try to see it off for good. I'd like to know more though about the percentages, risks etc to make a fully informed decision.
Hope you are able to come to the right decision for you and hope you get the information you need on the 26th.
Either way it's nice to be in this place where there are other people on this crazy ride ready to lend a supporting hand when needed.
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