Hi everyone
First of all thank you so much for all your comments on this forum - it makes such a difference to hear from so many people who are going through the same thing as you and are being positive and encouraging about it all.
I am 39 and was diagnosed with invasive ductal carcinoma at the start of Dec 09 (huge shock), then had a wide local excision and sentinel node doodah on the 13th Jan. Found out yesterday that my lymph nodes are clear (hooray!) and I am only Stage 1, but they found a second very small cancer at the edge of my margins so they have to operate again.
They have given me a choice of a second WLE + recon with tissue from my back, or a mastectomy + recon of some sort. I have quite small boobs so the WLE would involve a fair bit of recon, and of course is not guaranteed to result in clear margins, and if it didn’t I would have to have a mastectomy anyway.
I just can’t decide which is best. At least the mastectomy would definitely get rid of everything with no further operations, but I really really want to keep at least a bit of my breast (and nipple!). But I keep asking myself if there’s any point, if they find more cancer and I have to lose it after all, and have yet another operation, more time in hospital and feeling crap afterwards, etc etc…
I’m going back to the hospital on Friday to discuss it some more but just wondered how you decided if any of you have been in a similar position.
Hi there - big decision indeed, wanted to say whatever you come up with it’ll be the right one for you. I guess its important that you give your esteem and your self belief a big boost and confirmation that you’ll make the right call whatever that may be! This thing (from my very limited recent understanding of it ) seems to be such a personal disease on so many different levels, that its important that its you that’s happy with the decision. My only advice to you would be to go with your instinct - on some intuitive level you’ve maybe just not verbalised yet.
Hi Electric Landlady
Sorry you have to make this decision. I was also diagnosed in Dec and had a wle my margins were clear but narrow because mine was a grade 3 the Consultant was not happy and said he would do a further wle. I went in as a day patient and the results were good all tissue removed was clear. The 2nd op was much easier to get over because there were no lymph nodes involved. I think you have to do what is right for you. If you really really want to keep your breast then I would go for the 2nd wle (at least you will know you gave it your best shot). I wish you luck in your decision and also for whichever op you choose. If you want to ask anything you can PM me. x
I was dx very shortly after I turned 39. I had WLE and axilliary node sampling (they took 7, of which 5 were affected)I said at the time that I wanted a full mastectomy if there was any doubt, and I stand by that now getting on for 2 years later. If it were me, I’d have it all taken off. In fact, there have been times in the intervening period that I have wished they had taken it all off - I was hospitalised last July with cellulitus in it and had antibiotics galore to take on a holiday with me. It is still pink and sore. Have had chemo and 30 rads.
That’s a bit more of a ramble than I intended, but you will make your own decision. How about writing a list of pros and cons for each procedure? This might crystalise things for you. Good luck whatever you decide.
thanks for all your comments and for understanding. My OH is lovely but just keeps saying “it’s your decision, I’ll go along with whatever you want” which of course is all he can say, but i really needed a bit more input than that so it’s brilliant that you are all here. (in a way. Obviously it’s not brilliant that any of us has ended up having to use this site…but you know what I mean…if we have to be here it’s good that we are…)
Anyway…I have made a pros and cons list. Unfortunately both options have come out about equal but it still helped me to think things through. Also for some reason it hadn’t occurred to me that they wouldn’t need to take more lymph nodes so thanks for pointing that out, it has made it seem a bit less daunting.
I have also made a list of further questions to ask them tomorrow which has helped too. I am 90% towards deciding on the WLE and keeping fingers crossed that they get it all, but we shall see what they say tomorrow.
Well I went along armed with all my questions etc. The surgeon examined me again and said it will be much better to do a WLE first and wait for the results and then decide whether to do recon or mastectomy + recon later on. This sounds much better to me too.
Then he said they they can operate on MONDAY - wow, a bit sooner than I was expecting but so much better than hanging around waiting.
They are also going to sugically remove the haematima I had after the first op as it has not gone down despite two lots of draining. This is a big relief s I was beginning to think i would always have one A cup and one DD cup.
Finally they expressed concern at the amount of bruising I have and said they want to test for blood clotting disorders…great, something else to worry about. But they should have the results of this by Monday.
So progress has been made!! Thanks again for your input girls.
Onwards and upwards
love and peace and have good weekends xxx
Well I’m back home now, the operation went well, except for the 3 attempts it took them to get a drip into me (ow). I am feeling pretty sore but not as sore as the first time around. I’m soooo relieved to have got the haematoma dealt with and to have a boob of a (nearly) normal size again. Oh and they didn’t mention any terrible blood diseases so I’m assuming the blood tests didn’t show anything out of the ordinary (forgot to ask).
Glad your home and sort of sorted, should be more comfortable now without that hematoma dragging you down.
I’m back at the city tomorrow for my rads planning…
Just out of hospital a week after my mastectomy and I had 2 wle ops before, just like you. Unfortunately I had to have the third final operation but when my sister said I should have gone for the mastectomy after the first op when they offered it, I was adamant that you have to try and conserve your breast as a priority. I suppose everyone is different but I’m glad I tried the second wle despite finding out the margins were not clear.
I really hope your results will be positive.
Hope you are ok and feeling you made the right decision.
Loads of luck for the future from Welsh girl.
Well everything continued to heal well after the second op, and yes it’s been a huge relief to get rid of the haematoma!
Unfortunately they found another 2 very small cancers, so now it’s mastectomy time after all as although they got them all out, it’s pretty likely that there are more. But I am really glad that I tried breast conservation first - as you say at least I know I gave it my best shot.
So the mastectomy is on Monday and they are doing a LD flap at the same time, plus a small implant as they don’t think I’ve got enough tissue back there to make a whole breast. I am spending the weekend saying goodbye to my nipple…I will really miss it! Sounds wierd I know but it’s been through a lot lately and I feel it deserves some sort of recognition.
Hey ho. Hope you ladies are all doing well and having good weekends. Tally good luck with the radiotherapy!
xxx
Hi Electric Landlady Sorry the 2nd wle didn’t give the result you wanted. I’m glad you feel as though you gave it your best shot though I would have felt the same. Wishing you good luck for Monday hope your op goes well x
Hello all
Well the surgery went well, I didn’t need an implant after all and the surgeon even managed to reconstruct a nipple at the same time so I now have a lovely new nipple almost as good as the old one.
I am stiff, sore, knackered, covered in scars and have a seroma (yuck) but am definitely on the mend. Find out tomorrow what follow-up treatment I need. Thanks again for all your input and hope things are going well xxx
Well it turned out that there was no more cancer in the rest of my breast after all However I’m glad I did have it all removed, as the fact there were 3 small bits growing showed that the tissue was unstable, so it would probably just have been a matter of time…
My surgeon now says I don’t need any more treatment, not even Tamoxifen (which I am soooo pleased about). So that’s that. It’s the wierdest feeling - I was all geared up for weeks or months (or years) more of treatment but now apparently I just need to go off and live the rest of my life. Yes, it’s that simple. Well, apart from the yearly checks, the tidying up surgery I might need, oh and and the fact it might come back.
Back to work next week and already I’m looking forward to all the “so you’re cured now” comments. Sort of feels like an anticlimax, although obviously a very good one.
I will still be popping in here no doubt…thanks for all your help and best of luck to everyone out there, keep smiling and hope you all do well xxx
Fantastic news! please be very kind to yourself and remember that you have gone through the rollercoaster and your mind needs time to take everything on board - oh, and celebrate!!
hope you never look back
love, monica
However I’m glad I did have it all removed, as the fact there were 3 small bits growing showed that the tissue was unstable, so it would probably just have been a matter of time…