Chascat, so glad your WLE and ANC worked out for you. It was obviously the right decision for you to make.
Linda, I hope they have managed to get a good margin for you now. I agree, that lumpectomy and rads can be a good decision for some, but reading experiences of others such as Featherbird, mandy and Zeppa, I can't say I would want to take the risk of everything being ok, so as always, it's a personal choice and depends on what you are prepared to deal with if things don't go well at first.
Jen, I too hope our treatments finally get rid of the b****r. Also hope they can make their minds up about bone mets/not bone mets. It can't be very good for you, not knowing (hope it's no bone mets).
Megsmum, although I'm not having recon (too long an op for my lungs to cope with) I'm very glad I had Mx. I know I only had one node with cancer in it, I haven't been told whether i had vascular invasion, but I notice my blood tests are checking tumour markers.
Thank you all for your posts and good luck for the future.
I regret not having a double mx. I am very overweight and so they removed over 600g from one breast. One reason for no mx (I had said I would be happy to have one) was my weight - it would have made me even more lopsided, but the other, I think, was that hospitals here in Germany are sometimes judged on the number of mxs they avoid.
Anyway, I had a lot of radiotherapy and as a result I got lymphoedema in the breast and trunk. It took me a long time to get used to the fact that I will need treatment for life. My tumours were not large, but multiple, hence the biggish operation. It's 5 years on now and I still have trouble with the breast. I can't help feeling this could have been avoided if I hadn't needed that radiotherapym, although of course I don't know what lymph problems I might have got with an mx.
The weighted prosthesis I eventually got (after 3 years) makes the lymphoedema worse. Wearing a bit of 'spaghetti' - a sort of foam sheet with ridges in it - helps a lot, but there's no way I could wear a prosthesis on top of it.
My tumour was 15mm. Grade 3 invasive ductal with some high grade DCIS cells mixed in with it, HER2+++ and hormone negative.
I had a WLE and SNB. My sentinal nodes were clear, and no evidence of vascular invasion. The invasive tumour was removed with good clear margins. However, the DCIS cells extended into one of the margins leaving only 0.5mm of clear tissue, so second excision required to shave off a bit more tissue from the side of the cavity.
I am still awaiting the results of this second excision and whether clear margins on the DCIS were obtained.
My initial WLE and SNB operation took less than 45 minutes. I went down to theatre at 12 noon and was home in my reclining chair by 5pm. No drains and no discomfort. Painkillers not needed. Full arm movements from next morning. Boob bruised and tender.
My second excision took about 20 minutes (no armpit messing involved). I went down about 9am and was home by 1pm. Surgeon went in through the same excision as the first time, so no extra scar. No drains and very little discomfort - took a couple of painkillers on first night. Boob bruised and tender.
From a prognosis point of view there appears to be no difference at all between a mx and a WLE + rads. Everything I have read points to this being the case. The vast majority of WLE's are successful first time, and of those needing a second attempt, the vast majority are successful. It is uncommon to need further surgery.
I haven't yet got the results of my second excision. I will let you know if I have any regrets when I get these!!!!!!!!!!!
I have a WLE and ANC in January 2012, it was a small tumour with clear margins, for me it was the right decision as there were no further complications. We have to put our trust in our medical teams and accept their advice and recommendations but we all know that this decision can sometimes be unclear, for me personally it wasn't and I have no regrets.
I had wle & ax clearance in jan 2012 margins were clear but pathologist found 2 tiny new tumours undetectable to the eye in the sample, my option was to watch and see if anything developed over time in remaining tissue or have a mastectomy. I chose mastectomy, that was the right decision for me i would not have coped with the wait and see method, even though i hate my scar now and cannot wait for reconstruction. Incidentely no more cancer was found in the breast tissue but i still know mastectomy was the right way for me.
Hi Kathy, Mandy and Jenanne, i finally had my radical masectomy and full axillary clearance in Dec 12 after being diagnosed in July. Had 1st lumpectomy august with unclear margins, had 2nd lumpectomy and 2 sentinel nodes in october again unclear margins and one node positive. Am now one week into first chemo cycle then rads and tamoxifen. Life seems to have been on hold since my first appointment (routine mamogram) in May, but they kept saying all ok nothing to worry about. Asked for double mx at my pre op interview for the mx (so i won`t have to go through it all again should the need arise) but they said no, have to wait until recon where they will do it then. With the choice, I would most definately go for masectomy in the first instance. Once you have had time for healing it`s no big problem with mx and anc, and keeping up the exercises just takes a few minuites a day
Kath and Mandy, I really hope that the treatments we're all having at the moment will get rid of the dxxn BC for good!
I am looking forward to the end of my chemo/rads and being able to enjoy the summer!
Mandy, my m/x and ANC went very well - surgeon did a good job. I do my arm exercises and have no arm problems at the moment. The underarm area is numb, but less than at first & I've gotten used to it. I've got a silicone prosthesis to wear when I want to and not having the breast hasn't bothered me much.
I suppose whether it's surgery, chemo, whatever - the less we have to go through, and take our time up with, the better.
They say what will be will be - but, I agreed to a breast conserving WLE following a 'routine removal' of a 'cyst' that turned out to be IDC. Am about to start chemo after which I have to have op number 5 (BC now been found in both breasts, mixture of IDC, DCSI and Tubular). I wish I'd had a double Mx right at the start in October. Surgeon is going back in to look for clear margins but has agreed in she doesn't get them she will do double Mx with immediate recon. In the meantime I have to postpone my post chemo rads! What a mess!
Mandy (grumpy and still hurting from WLE number 3)
Thanks for your post here Kath. Well, first, none of us wants to have ANY surgery! What the medical people recommend depends on so many factors. In my case, in Oct.09, I was told a radical m/x due to tumours in different parts of R.breast - they can't just do 'melonball scoops'! (ER+, HER2-, Grade 2).
It would take a little time to explain my BC route (profile has details). But basically, I was told after initial '09 scan I had bone mets, so no
m/x - 6xFEC, hormone therapy & Zometa for bones instead.
Breast tumour back in 2012 (ER+, HER2+, Grade 3). Also told they think I haven't got bone mets, and have questioned this since July 2011!
Now had m/x and on 4xTCH, rads, then herceptin for a year. Livid. I wish so much they had offered me the choice of m/x at the start. There is discussion going on in medical circles about whether/not women with mets should be offered one.
I went along with what was recommended by the surgeon/onc, not ever being told I could choose to have m/x at the start - even tho' it's not generally done at the moment, some women have it who are d/g with mets.
I am where I am , but things could've been so much better??
Just thought I'd throw this question out for discussion. For those who have the choice. would you choose to have mx, or lumpectomy? And what would your reasons be?
I had Mx on 12.12.12 and my reasons were, I have a lung condition and the surgeon (or rather anaesthetist) didn't want me to be under the anaesthetic for too long. It only took about 1 hour to do Mx, which I'm told is the same length as lumpectomy. I was aware that having lump removed might not be as simple as it sounds and further surgery might be necessary and I wanted to avoid that. So went for the Mx and SNB.
Also, has anyone regretted the decision they did make, and why?
I'd be interested to hear other decisions/reasons.