Hello, I read multiple people who had not all margins clear having 2 or even 3 to 4 re-excisions.
I had a lumpectomy , invasive grade 3, fast growing. My tumor nearly doubled in 2 months. Cancer is present on one margin plus a DCIS with <1m from 1 margin.
Is re-excision at least a must if a margin is not clear post lumpectomy? IN such case is a choise given for a mastectomy?
Is anyone in such scenario left with a choise not to go for re-excision and have radiation instead?
The DCIS never showed up prior to surgery. I’m worried there are more yet not found.
I get no dialogue or options. I’m simply told what will or will not happen.
So sorry to read your post, with so much going on was wondering if a chat with your breast cancer nurse, as I feel you must be allowed to have your say in this, I know we need to be guided by our team.
You may well get offered radiotherapy, which should clear up anything left behind (so I understand) this is what I was told after my lumpectomy.
Also, our breast cancer team on this site are extremely understanding and caring you can always call them for a chat, I’m sure they will point you in the right direction.
Please come back and let us know how you’re getting on. Wishing you well with lots of happiness ahead.
Thanks Tili for responding. I will get radiotherapy but given my tumor has grown by 7mm per month before removal I have the idea this tumor will keep running away from it and i understand from here on the forum that radiotherapy makes you sick.
Happy e(aster)gg day!
I think the position of the cancer in the breast decides if re-excision should be done. My 35mm tumour was close to the top of my left breast and after the lumpectomy I was told another operation could cause the release of more cancer cells. Radiotherapy was recommended and the oncologist programmed it so that I was radiated close to the neck which should mop up any strays.
Of course I was worried about the possible recurrence especially as I had to have axillary node clearance due to cancer being present in four nodes. There was no offer of a mastectomy because this would not have made a difference to the situation. I was also told that my age (almost 81) and fibromyalgia were also a factor.
I would press your surgeon and oncologist for further details because you need reassurance. I too questioned their decision because I was concerned about the less than required 1mm clearance but I now know why they came to this conclusion. I had both DCIS and IDC plus lymph node involvement.
As regards radiotherapy it is a matter of pot luck with side effects! Mine resulted in breast lymphoedema for which I am having some successful treatment and increased neuropathy which could be due to Letrozole. However my breast surgeon commented that any side effect is better than having cancer!
I hope you find some answers to your questions.
You should be given the chance to ask those questions and I would advise writing them all down so that you don’t forget any of them and contact your BCN. You could also ask your Hospital switchboard / operator for your Consultant’s Secretary’s number and tell them that you need to clarify some things . They may suggest that you email the questions back to them to pass on to the Consultant.
Occasionally people have been given a choice between having re excision and radiotherapy but I doubt that would be the case for you the way you have described it and I think radiotherapy would be part of the plan for you anyway .
It’s natural to be scared of having radiotherapy - there are a lot of threads on here about it we use it to get practical support and help if we need it. I had fatigue and redness / some swelling and itching but 3 years down the line I don’t regret my decision to have it . Xx
Everyone responds differently to treatment however I didn’t have any sickness at all I was very tired I think you’re travelling back and forwards to the hospital didn’t help me other than that, I found this was, in fact, the easiest part of my treatment.
Take one day at a time at the moment, try not to worry too much (easy for me to say) be kind to yourself,
Oh wow bless you. I’ve got a ways to go to 81 but I don’t wanna miss it.
Thanks for your input. I have requested to speak to the surgeon already so waiting for response and given radioT experience from just the few of you here hopefully one potential possible relief for radiotherapy for me too. Still I think I prefer to have it all removed. Mine is inside under, I mean anything left is. I also feel a lump to the left of incision but I understand that may be scar tissue
@JoanneN thank you so much I’ve read many of your responses to other peoples worries I did get his secretary’s number but no luck on emailing them with my questions, they referred me to my BCN so sent her some.
More hugs to you Tili, I think I’ll go in a bit less worried on RadioT
Hi, as I understand it, if the end of the margin coincides with the end of breast tissue, then they dont take you back as there is no more to take in those directions. I had zero margines in 2 directions as it was as high up to the end of tissue one way and up to skin on the front. They dont then go beyond and into surrounding tissue - which would of involved skin removal. Instead, I got given radiotherapy boosts to the area - had 19 in total. And no, I was given no choice in that, was just told by oncologist that that was the plan after being told by surgeon there was no more to take - he did do a cavity shave in one direction which was totally clear that was reassuring.
I could take it that my tumour grew by 50% in 1 month since scans as it was 50% bigger than thought in surgery and also surrounded by unseen DCIS, but I doubt thats the case and more likely that it was bigger than the scans saw it as. Surgery is more accurate, you tend to hear that lumps are a bigger from surgery than on scan. Given that I had a grade 1, slow growing lump, on balance I think it just didn’t show up well - I actually asked to see the mammograms and it wasn’t the white speckles of calcification often seen, more of a whispy cirrus cloud. Some tumours are harder to spot or see the full extent of.
Hello @kellya
I had 15 sessions of radiotherapy in February and it has been fine for me. My skin was a little sore at the end and it turned darker but I moisturised well and now it’s only still a bit sore right at the end of my scar towards my armpit and the patch of darker skin has disappeared. I still moisturise the area thoroughly though.
I got very tired by 2/3 of the way through the 15 sessions. I still have days where I feel tired but I think it’s an accumulation of everything and not just the radiotherapy.
I hope it goes well for you and wish you all the best xx
Hi Kelli’s
I had the same thing with DCIS 1mm and the surgeon told me they go by the IDC which is the principle cancer, so no, re surgery is not required with this situation.
I had to work today. Focusing is becoming harder. Thanks for all your input!! Very helpful @entropy@jayesse@Flan. Thanks to this forum I can learn and research as at this point I still know very little about the radiotherapy. Before this forum I thought that chemo WAS radiotherapy.
Hi, kellya–I had to get a re-excision a week after my lumpectomy. My surgeon said the margins needed to be wider since 3 out of 5 tissue samples showed microcalcifications. I agreed to whatever he wanted to do. I found the second surgery to be so much easier than the first one. I knew exactly what to expect before and after the surgery.
I had 16 rounds of radiation a month after that. I worked the whole time. I was lucky to have a very understanding boss. I was fatigued and she scheduled me for shorter days and only two days a week. Some days were harder than others but I got through it.
I just had my first mammogram 6 months post surgery and I got the all clear. I had a lot of swelling that had to be drained but that was a breeze. In 6 months I get a full mammogram and I’ll either be relieved with the results or I’ll have to get back in the fight. Cancer is part of my life now. It sucks but I’ve learned to accept it.
You get to make the decision that is right for you. This is your one and only life and you’re the boss. You may want to get a second opinion. If you have a nurse navigator you can talk to her/him. We’re all here to support you. Blessings to you.
Thank you!! and that’s great your all clear 6 months post surgery. Wow you got re-excision 1 week later. For me every step has weeks added to the wait with no testing in between. 4 weeks after surgery I think I also need a re-excision but not offered to me. Only sentinel node taken w extracapsular spread no testing about any next nodes.
Since your all clear It means no cancer, don’t think about what could. My grandfather had throat cancer, surgery 2 months later, lived almost another 20 years
Hang on, your seninel lymph node had extra-capsular spread? Are you sure, as just mentioned that? Were you told that in your post op results meeting and also told not for further surgery? What exactly is the plan going forward? Are you down for chemo? I’d of thought with lymph node extra capsular spread the options would be either back for a total axillary clearance, or chemo to kill any remaining cells, or at the least radiotherapy to your lymph node area. Its not the margins that are the focus here, more the extra-capsular spread, that will dictate future plans. It sounds like the main tumour has been dealt with, now the lymph node is the next consideration.
It’s in the pathology report which l asked for at the end of the consultation.I was only told there was a small aount of cancer in the sentinel. She said it as if no other nodes had anything and they would not do further tests unless at least 4 lymph nodes are positive but they haven’t tested any other nodes.
An oncotype dx test would be ordered they said.
Its good that they are doing an oncotest on it. Sounds like you haven’t finished all the tests and results yet to get a total plan, rather than the plan is a done deal.
The onco test should indicate if chemo is needed. Perhaps it would be good to also talk to and confirm with your BCN that the path results are ‘extra-capsular spread’ as ‘no extra-capsular’ spread would fit in more with a description of ’ not much cancer in’, so I can understand the confusion there. That would have me confused.
My bcn is not helpful at all. I have the pathology report. It’s macrometastsis edit:2.5mm extracapsular spread of 1mm 5 weeks ago with no further test to this day.
I would be starting chemo not before 3 weeks. I’m looking fr a 2nd opinion now.
@entropy. If the sentinel node is macrometastasis w extra capsular spread what sort of tests would be the next? Isn’t it at least an ultrasound guided biopsy if suspicious other nodes?
If your BCN isn’t helpful you could try ringing the helpline and speaking to the BCNs here on 0808 800 6000. If you read them your pathology report and talk it through with them they may be able to clarify things for you a bit . Xx
I did get his secretary’s number but no luck on emailing them with my questions, they referred me to my BCN so sent her some.
