Well - here I am again.
Have seen the surgeon today and have to see the Macmillan nurse again tomorrow. The surgeon gave me three options - a simple silicon-type implant, a reconstruction using the muscle in my back or a reconstruction using fat from my stomach. Now I am not a very big person and I have three surgical scars across my abdomen so that was immediately ruled out (umbilical hernia, appendix and sterilisation) so my options were just the first two. I have opted for the reconstruction from the muscle in my back. Yeah! BUT!! As I have said, I don’t have a lot of spare flesh anywhere (:‘() but the surgeon reckons he can do the back muscle job (fingers crossed) so that is what we are working on. The operation is set for 23 January 2012. Another problem I have, mind you, is that I am a smoker, and have been for something like 30 years. This is complete no, no as far as the surgeon is concerned and I can see his point. However, the minute I realised/knew that I would have to have a major operation I immediately stopped smoking and got the highest nicotine patches I could - and I am USING them!! I reckon, as from today, that I have five weeks to clear myself of the nicotine and then, hopefully, everything will be alright at the time of the operation.
Doesn’t life just bring everything into perspective? :’)
So pleased you are gradually moving along the parth of treatment.
I had an mx and back muscle recon (often referred to as an LD Flap recon) back in January. I’ve posted several times with my experiences under the ‘reconstructive surgery’ section, but do pm me if you have any questions.
I also smoked, although not heavily, - but haven’t since a week before my surgery.
Really pleased you have a plan and a date now. Crikey, how far youve come in the few weeks we’ve been
Sharing experiences! how are you feeling about yesterdays consultation and the news? I was torn between thinking it was all hitting me too fast and then getting jittery about the waiting, so I think having a clear date not too close or too far off seems the best option, and all being well, you won’t need any more treatment after the op.
Hey, really well done with cutting out smoking…maybe a side benefit will be spending the ciggies money on a nice treat ŵhen this is over.? I have never watched so much tv as since my mx and recon but I suppose I’m also saving money in not going out etc etc and not using petrol! Lol.
Off to see my PS later to see how she feels I’m shaping up. Haven’t been able to wear the fortress bras I’m supposed to wear 24/7 because of an infection and swelling in the wrong place for a bra cup (maybe i need a three cup bra) so not sure if this will have made a difference. I’m getting there tho, can’t believe it’s over three weeks now.
Having had the surgery set for 23 January, I received a call on the Friday before Christmas Eve asking if I would be willing to go in for the op on the 15 January instead. Yes, yes! I replied - the sooner the better as far as I was concerned. YAY! So that was when it was going to be…until… another 'phone call later (well, about 1/2 hour later) to offer me the op on 10 January. So there it is. Next Tuesday. I’m going for my pre-op this afternoon, which had already been set when the date was 23 January. By this time next week I will be reclining in a hospital bed having had the operation and be on the way to recovery all being well. So wish me luck please, and I will post again on Saturday 14 January whilst watching James Martin on Saturday Kitchen Live…
Ooh so glad you haven’t got to go through a long drawn out wait now we are into the new year. Its amazing they have suddenly come up with these earlier slots…as you say, you’ll soon be on the other side!
I know it’s a bit late in the day for me to be posting having promised I would do so on 14 Jan, but here goes.
My op on the 10th went well and I was discharged from hospital on the 12th. Apparently I had four ‘odd’ instances during the operation and have to be referred to a cardiologist (not seen as yet!) I’ll just have to wait and see what that brings. I’ve been attending the hospital every three/four days as I have a seroma (huge!) which needs to be drained at frequent intervals. I have also been referred to the oncology dept., but - as they hadn’t yet had the path report - I have another appointment with them on 7 February. Yesterday, my breast care nurse at the hospital told me that I have a small area (5 mm) of invasive cancer (I think it was probably beneath the nipple as my surgeon told me I have Paget’s disease - why can’t anything be simple and straightforward?) so now I possibly have to look forward to chemo - or some such thing. They will let me know my options next Thursday. When I saw my GP last week she was very concerned as to how I was dealing with all this mentally…I was more than happy to tell her that I was dealing with it with no great problems at all :) and that I was having great support both from my breast care nurses, my family and from this forum - so thank you all.
How are you doing? Did you have the LD flap in the end? You were in and out really quickly!
Hope your seroma is reducing well. It’s really been quite a quick journey for you and you’ve done so well. Interestingly, like you, after my mx they found some pagets disease cells behind my nipple even though there had been no visible signs of pagets. Hey ho, good job I hadn’t been offered a nipple sparing mx as I’d probably have gone for that…then have needed to go back for it’s removal.
Yes indeed, I was in and out like a rocket!
I’ve been to Oncology twice -yesterday was wonderful as they told me I wouldn’t have to have chemo…what a result! However, I will have to have some sort of hormone therapy - seems the invasive bit is only 5mm and they (they?) say it can be treated this way, and it will only become ‘tricky’ after probably 20 years. At this point I said I would probably be dead by then in any case, and this lovely doctor said ‘Only if you decide to engage in extreme sports!’ Bless her
Going back to your posting - my Paget’s disease of the nipple was never discovered until the surgeon who was going to operate on me took one look at my breast and announced ‘Paget’s Disease’…WOW, was that ever a shock!
I did opt for the LD flap, and also said ‘take away the whole lot! I don’t need it!’
It’s been a tricky journey, but I have a wonderful daughter who has helped me through each step of the way - who has dressed my bruising, my scars, my body. Bless her, she has been a rock.
The seroma is reducing bit by bit…slowly. I have been visiting the seroma clinic twice a week for the last four weeks and I believe that tomorrow I will be down to about 100 mls if I’m lucky. Fingers crossed!
Sorry, Nonsuch - I have given you ‘bell, book and candle’ about me…but how are YOU?? I would really like to know, since we are walking the same road.
Take care, and please let me know
Very, VERY best wishes,
Duel
XX
An addendum, Nonsuch.
It would appear that Paget’s is a pretty rare form of cancer (all my friends have Google’d it) so we are in good company, eh?
Love,
Duel
XXXXX
What? an honour!? Paget pair…! I wonder if anyone has pagets on its own without any other form of BC?
It’s odd that yours so was evident to one person and not to anyone before that?.. But then the surgeon who did my mx called me in early, as soon as she had the path report. Said once she had the report said she had checked my photos, mamms and scans etc because she was sure there’d been no outward sign of pagets.
I do wonder if or when the early stage cells would have morphed into anything else, but hey ho I’ll never know though maybe they will use my tissue try to find out in the lab…it sounds as though it’s another area where knowledge is very under developed.
Cant believe you were in and out in two days after a LD flap, what an example to others you are!!! So pleased you don’t need chemo and you’re now on the right road, over the hill in the best sense, things are sorting themselves out. At the time of drains, seromas etc it all seems a horrid whirl doesn’t it?
As for me, My DIEP went well, no complications in the wounds, just a stubborn bit of infection in the boob tissue from wks 2-4 but that responded eventually. I suspect it was connected to having the boob drain out a bit early when it was still draining 50ml and possibly some seroma building up …but what do I know? So,
My tum is flat, my scars are ok, my boob is stuffed, I would prance in a bikini but it’s a bit chilly. I don’t need chemo or rads or anything, so I’m just doing my exercises, rubbing all my bits and waiting for my appointment to discuss the fancy bits…
I still loiter here because people were so helpful for me after the shock of diagnosis so the least I can do is to offer my experiences where they might help. I wish we could get consistently good info for everyone around the country.
I was diagnosed on 10th February with DCIS and calcifications. Like most of the women on here I found a lump just above my aerola in my left breast. After the mammagram came the shock of hearing “radiologist feels that the lump is suspicious” plus calcifications. The lump is 5cm and after having a biopsy on the main lymph node which looked enlarged on the ultrasound was found to be affected too.
So far I have seen an oncologist, a plastic surgeon and the surgeon who will be performing the mx. I’ve been advised to have chemo first as my surgeon would like to shrink the lump as much as possible so that he can save the skin around the aerola. As I type this I can’t help feeling how matter of fact I have become of my situation and people are incredulous to how strong I am being. I have no intention of this blip in my life get in the way of living.
Like everyone I am scared but prepared for everything that will come my way in the next months or so. I have a CT scan scheduled for next Tuesday and am praying results will be all fine.
I am reading a book by Barbara Stone called Initiation to Cancer, Surviving the Fire. She is an inspiration and I would highly recommend this book to anyone who is newly diagnosed.
I wish you all the best for your treatment your positivity is wonderful to hear . My journey is now nearly over as i have been very lucky my DCIS was found early it resulted in a MX with LD reconstruction lymph nodes were clear so no chemo or rads !!! just waiting now to see about nipple reconstruction . I have found this forum fantastic .
Hiya Rachel
I’ve had same story as you s far, tho a DIEP. Got appt with PS at end of March to look at nipple recon and any other touch ups needed. don’t think I’ll have good side tampered with though!
Nonsuch
I have opted for DIEP but have to get through 6 sessions of chemotherapy first. I’ve read everything there is to read about DCIS, chemotherapy, radiotherapy and my head is full of all there is to know about side effects and benefits.
There is no history in my family of Breast Cancer so has been a total shock to me, my family and friends.
It’s good to hear of all the positive stories I have read on this forum and everyone’s journey is different. I am at the beginning of my journey and have the support and encouragement from all my loved ones especially my partner who has been a mountain of strength to me. He has been to all of the initial appointments and consultations, anything I have missed he has picked up on. Without him I’m not sure if I would be quite as strong as I am…
Dani it’s extremely rare to have positive nodes and need chemo for DCIS… In my unit we wouldn’t even check the nodes for DCIS as its in situ it can’t really spread to the nodes as its contained within duct. It’s only when it becomes invasive ductal cancer IDC that it has the ability to travel outside of the duct.
Very occassionally when DCIS is disgnosed on biopsy they find aa small focus of IDC on pathology… It is more common when somebody is diagnosed with IDC to find they also have an area of DCIS.
It doesn’t alter your prognosis or treatment but just sounds more likely that there is an invasive component as well as the DCIS hence the positive nodes and the chemo.
Btw it’s much more common to have no family history of BC… Only 5% of BC is genetic and a further 15% have a family history but 80% do not.
My surgeon has not mentioned the words invasive ductal cancer. He advised neo adjuvant chemotherapy to reduce the lump, I thought it was 5 cm but it’s only 4cm my partner informs me. There are calcifications in the breast tissue and 1 lymph node affected.
I will be having a CT scan tomorrow and will ask the breast care nurse for information when I’m there.
It would be very rare to have a positive node if you have DCIS and no invasive cancer… As I said we don’t do SNB for women with only dcis unless they were found to have a bit of invasive cancer at the time of surgery… Which is pretty standard across most of the uk… But it’s maybe something to do with the size of your lump although we still have ladies through screening with large areas but they wouldnt get an snb either unless some idc is found during their op in which case they would have a second op to have an SNB.
Also if you having neo adjuvant chemo this is given before the lump is removed so there is a possibility that a small focus of invasive cancer could be within the 4-5cm… It doesn’t change your outcome or treatment… It’s just that positiv nodes nd been chemo for dcis alone isn’t common.
They will have more info after surgery when the pathologist will look at it under a microscope… Most people don’t get the full picture till after surgery.
