Hi ladies
History so far, dx July 07 aged 49. 35mm tumour on right breast. Had WLE, Epi&cmf, rads, herceptin, finished Dec 08.
First mammogram fine, then recalled July after 2nd mammogram, was told there were some calcified cells in my right breast, advised to have a mastectomy. Had my mx on 3rd September with a strattice recon at the same time, results of mx showed tissue ok but some cancer cells on my old scar under the microscope. Went back in on 27th Sept to have some extra skin removed around the scar. Returned for my results yesterday only to be told they werent happy with the margins around the skin so advised to go back for a larger piece removed from my breast and some skin grafted from my back. Was quite shocked as the surgeon said this was quite uncommon and as the cells are on the skin they are more difficult to monitor. Apparently these cells came from my original cancer and went through the scar which I am finding difficult to comprehend, does that mean all the other treatment didnt work then?
Would be grateful if anyone who has had this happen to them could give me some more information. Also suggested by the surgeon was
that I had 6 Tax cycles of chemo which I just dont need. He said I could just walk away and have no further treatment as they could have already removed any extra lurking cells, I think that just made me more upset! Anyway, meeting with the ps in a fortnight to discuss the new surgery.
I am so sorry you are having all this worry. I haven’t been in the same position, so I’m afraid I can’t offer any advice, but just wanted to comment on the chemo option. I know the idea of having more chemo must be horrifying after all that you have been through, but Tax is third generation chemo and considered much more effective than the combination you had first time, which would appear to have left a few stray cells behind - so maybe it would be worth considering?
Thanks ladies,
I am seeing the plastic surgeon on Tuesday and he will be able to explain the procedure re the operation and skin graft, hope I will be more settled after the appointment. Cant really think about the chemo until the operation is over… little steps!!
I’m really sorry to hear you have a recurrence, it hits hard (I have one too).
Re Tax, I was wondering if you could go for just a couple of cycles instead of a daunting six? I think it’s difficult not to take the latest and most effective on offer to us, but much of the benefit comes from the first hit of drugs apparently.
I asked my onc about planning for just a couple of cycles of Tax (I’ve had 4 AC) and he said this wasn’t standard and so no, he couldn’t ‘plan’ for just two sessions but I was quite entitled to stop whenever I felt I’d had enough. I have 4 Tax lined up but we’ll see how many I get through.
Anyway, just a thought. Hope the plan for surgery goes smoothly. xxx Jane
I was wondering if you had any change to your scar? I was also 49 when diagnosed (Sept 08) and had exactly the same course of treatment as you, finished my herceptin July this year. I have had two clear mamos, but my scar has a “hole” which developed about six weeks ago. It weeps a little, clear but not very pleasant odour. I am due to go into hospital for what my consultant breast surgeon described as a “tidy up job”. I am wondering if I should ask him about having part of the tissue examined. It just seems a bit strange for this to have developed two years after surgery.
Anyone had the same?
Good luck with your plastic surgery appointment today.
Hi girls
Thanks for your feedback on this thread. I saw my ps a couple of weeks ago and he has suggested I have an ld flap operation so he can remove as much skin as possible from the sight and replace it with the muscle and skin from my back, so I will have actually had two reconstructions when its all finished.
I go in tomorrow morning and they have said I should be in for 5-7 days, although this time I am so nervous, I think its because this op is bigger than my first one in September.After a nervous week, my ct and bone scans are clear - phew, sweating on that one.
Sue, if you are not happy with your scar, you have nothing to lose by having some of the tissue examined,and if there is a problem, at least they can do something about it before it gets worse. I know I have been really down with all my results, but at least now I will be getting treatment and in the end its all about life, isnt it.
Good luck if you havent already had your tidy up job.
Jane, I will speak to the oncologist when I have made some recovery from the operation, have to get my results from that first.
Had my “tidy up” op last Thursday. Went to see Surgeon yesterday to get steristrips removed (also had op to left inverted nipple at same time) and got the news that they had send the scar tissue to path lab and came back with invasive cancer cells. The surgeon was surprised when I said that it was the news I was expecting! He was totally shocked as the scrub nurse was going to bin the tissue but he said they should send it away as it is routine with cases of bc. I explained that I had read your post and had already decided what the outcome would be.
I am to have a ct scan, bone scan just as a precaution. Then a lumpectomy and possible ovary removal and change from Tamoxifen.
I hope that you are recovering well from your op, my thoughts are with you.
I want to say a big thank you for posting, if I had not read your post I would probably not have been prepared for the results! It is so uncanny how we were exactly the same age at diagnosis, same size tumour, exactly the same treatment E/CMF, rads & Herceptin, and then same results 2 years later.
Anne, just to let you know that my CT scan was clear. I had a WLE on Thursday and will be getting radiotherapy in the new year. I hope you are recovering well from your ps operation.
Hi girls,
Sue, pleased about the clear scan,hope the bone scan is the same results, its such an extra worry isnt it, did you say your new cells were in the tissue? Well I hope you are making a good recovery from the wle from last Thursday, how come you are having radiotherapy, didnt you have it last time?
I actually came home from hospital last Thursday, just a week after my surgery. The breast surgeon removed 25 cm of skin from my back and the plastic surgeon, who is just fabulous by the way, unfortunately had to remove my original strattice implant and replace it with an expander for size reasons. I still have two drains in but have an appointment with the PS tomorrow for a wound check and then an appt with the breast team on Wednesday for the results of the skin removal. Still feeling a little fragile as its quite a large flap and it pulls in the middle, but time will heal it, the first week all I worried about in hospital was that the flap would ‘take’, so I am making progress. I am still convinced I will have to have chemo anyway, so I hope all the surgery is done now, I dont think there is any more they can do on that score, I am beginning to look like an extra from Thriller with all these scars!!
Anne, that all sounds extremely painful and such a huge op. I’m pleased that you are healing well and hope that the PS was pleased with your wound today and that you get good results tomorrow re the skin removal. Like you say time will heal your flap so it’s just managing to be patient and not doing too much too soon.
I was told by the surgeon that the cancer cells were on the skin, I have an appointment tomorrow to see him re the pathology results of the WLE - I’m hoping for clear margins. Still waiting for appointment for bone scan, but I’m really not bothered as CT scan was clear and stated that bones were clear too.
I did have radiotherapy first time round (20 + 4 boosters) and it was initially thought that I would not be able to have it again, but my breast surgeon spoke to my oncologist (who I’ll be seeing soon) and apparently there are some research papers to say that it can be done and this is the line he want’s me to go down.
Hi ladies,
Sorry not been on the site for a time, had to have yet another operation at the end of November, this time to take more skin from below my dx breast as there were still cancer cells on it. Even my expander had to come out so they could take as much skin as possible and thankfully they had clearance top and bottom of the flap, and that is now quite depleted. Unfortunately I had some open wounds that are now still being dressed daily but they are on their way. I now start my chemo next Tuesday, I am having 6 taxotere and 17 herceptin, so I am not going anywhere for a while!! Whilst everyone around me is relieved about the chemo I am not so thrilled, but after all my operations I dont suppose I am looking at the long term. Anyway, I will now be adding to any threads on the chemo section whilst I wait for those lovely side effects. Thanks for all your feedback which is much appreciated. Have told my plastic surgeon not to expect to see me for at least 12 months re a recon!!
Love Anne xxxxx
Sorry to hear that you are still having bother from your wounds Anne. I agree with Hatty, chemo isnt so bad - good tip is to drink plenty of water before and after.
My situation has changed as following MRI and ultrasound the radiologists feel that it I were to have more radiotherapy (on top of the 5 ops I’ve had in the same area) they would not be able to image my breast accurately in the future and are worried that they might miss another recurrence, so I’m waiting to get a date for mx with LD and implant recon.
By the way Herceptin isn’t bad either.
Good luck Hatty with the rest of your chemo and surgery.