At the beginning of the summer I was diagnosed with an invasive lobular carcinoma in my left breast after my first routine mammogram and a core biopsy. This was, as I'm sure it was for many of you out there, a complete shock, especially as I had been told by the doctors after the first mammogram that they were 99.9% sure that the specks they had discovered were just calcification and I shouldn't worry. I had a segmental mastectomy in August and a very small area of damaged cells was removed. When the pathology reports were reviewed it was decided that I should have a second operation for sentinel node sampling even though the results were expected to be negative. I had this operation in September. Indeed after yet another two week wait for reports the results came back showing no evidence of the cancer in the nodes removed, however, there was one more test result to be returned and I would have to return in another two weeks for that result even though my consultant thought it extremely unlikely that there would be any problems. No further treatment seemed necessary and I went home relieved and elated, phoning all family and friends to let them know and pleased to have had the problems discovered and treated at such an early stage. Two weeks later and I was back for the results - second major shock - the final results showed that there were tumor cells in two out of the five nodes removed. Again these were very small, isolated tumour cells and micrometastases and because they were so small my consultant wanted to take the results to the team meeting before recommending any further treatment ie: full clearance.
That final two week wait is now up. I had been expecting that there would be a recommended route for treatment. But no, the decision rests with me. I can either have a full clearance (which is booked in for the beginning of December) or not. Neither is the preferred solution. It seems that the nodes have done their job in filtering the cells, the likelihood of there being more early stage cancer in the lobes is small and if it did develop I will be having very regular screening to detect any changes. The question is: can I live the knowledge that they may be developing and traveling through the lymphs and trust to catch them in time if they do? The alternative is a third operation and one that seems to carry some risk of developing problems in my left arm and a lifetime of being careful to avoid damage to the skin (a problem since I often have quite severe excema on my hands) and lifting and carrying weights (another problem since I work as a photographer lifting heavy lights and equipment, plus I am renovating a house and landscaping a garden).
I never intended to make this such a long story, but I wondered if any of you out there has had a similar experience, or can reassure me that a lymph node clearance will not leave me any less able.
I have discussed this with family and friends but not with anyone who has been through it - any communication gratefully received. Thanks
FormerMember
hello there....I'm so sorry to hear that you have had such a lot of waiting for results and even more decisions to make. I am by no means an expert, but I have had breast cancer twice, once on each side, so i can only tell you about how it has been for me.
3 years ago i had a mastectomy, with immediate reconstruction. 7 weeks prior to this i had a lumpectomy and a few lymph nodes removed,5 in all i think, that were all clear, thank goodness. In the 3 years since those ops my left arm swells very slightly now and again, but never stops me doing anything, or lifting anything i want to( age and aching bones allowing!!)
In Feb of this year I had a second primary tumour appear in my right breast. i had another mastectomy( no reconstruction this time, as i needed radiotherapy and have to wait a while.) Anyway, I had a lypmh clearance this time, as we already knew one of the nodes was positive. ( 6 turned out to be affected.) so now i can compare the effect of a node clearance and a samping. I can honestly say, the right side, where i had a clearance, has given me less problems!! It still feels like my 'good' side and i seem to have escaped any swelling at all!
So, as I said at the beginning, I can only tell you how it has been for me. I trust my breast surgeon and have always gone with what he has recommended. I think you need to talk to the surgeon and then do what is right for you. That said, no one should feel pushed into doing what does not feel right for them.
I hope this might have helped you a bit. Let me know if there is anything else I might be able to give you a 'heads up' on.
Thanks for your speedy reply. It really does help to hear other people's stories. I too trust my breast surgeon, team and hospital and have really appreciated their concern and care at every stage so far. My problems seem to have got them stumped though. I think it's because my cancer was discovered at such an early stage (it probably wouldn't have shown up a few years ago) and then went on to show unexpected results - they have seemed genuinely surprised at each unwelcome result. I had expected that the consultants on my multidisciplinary team might split 50/50 in favour of a full clearance, but apparently it was even more complex than that as no-one had a clear answer. I'm going to speak to my Macmillan nurse again this week and hopefully get this sorted.
So sorry to hear of your repeated problems but encouraged by your positive outlook - back to work and normal family life, good luck.
