I was diagnosed with DCIS back in Aug 07. I had a mastectomy with reconstruction (implant under the muscle) and sentinel node biopsy on 14th Sep.
2 weeks later I was phoned for an appointment next day to see the breast surgeon, I was told that they had found another cancer, (pagets) the cancer cells were all high grade and one patch was close to the chest wall so therefore I was being referred for radiotherapy and I would also need Tamoxifen for 5 years.
I have just got my head around all that, when today I have been told that they have had another multidiscipline meeting and now I do not need radiotherapy.
I have an appointment to see the consultant next Thurs to discuss.
This site has been invaluable to me since my diagnosis and any queries that I had or when I had problems with my implant I found all the answers and support that I needed on website or forums. but tonight I just feel that I have a problem that I cant find the answer to. Why am I not happy? I should be dancing for joy but I feel really flat and tearful. I can’t get my head around the fact that a month ago I needed this treatment and now I don’t. It does not inspire me with confidence and I feel uneasy.I feel if anybody knows how I feel it will be people on this website. Why does this not feel like good news?
Has this ever happened to anybody else?
I don’t see why you should feel full of the joys of spring or autumn for that matter as you have been diagnosed with a life threatening disease despite probably feeling extremely well. The treatments stink and you are being told one thing one day and a different thing the next. Personally I can’t stand hospitals and the people who work therein and seem to think their time and lives are far more important than mine. I discharged myself immediately after my last session of radiotherapy and apart from one scare due to back ache which naturally I assumed was breast cancer related (none of the medics thought it was though and it went after a year so could not have been) I have not been back.
One day you will look back and while maybe not dancing with joy you will be able to put it in the past. Next week, 10th November is the anniversary of my tumour being removed - four years ago
Mole
Hi mollyjoemax
I am so sorry to hear you are having such a troubled time at the moment. Have you thought of phoning the BCC helpline? You can share your thoughts and concerns here confidentially and the staff who are either breast care nurses or trained staff with experience of breast care issues are able offer a listening ear as well as help and advice.
The number to ring is freephone 0808 800 6000 the lines being open Monday to Friday 9am - 5pm and Saturdays 9am - 2pm. I hope this helps.
Kind regards
Katie
Moderator
Breast Cancer Care
Hi!
I understand what you’re saying. I was told I would definitely be having chemo after my mastectomy (invasive lobular cancer), but then they changed their minds cos I had two tumours that were smaller than 2cms and no lymph node spread. I got myself all geared up for it and felt really upset (can’t find the word I need) when they said I’d be better off going onto tamoxifen as I’m 100% ER+ and PR+.
Like you, I felt I should be really happy that I wasn’t going to go through all the horrors chemo brings, but… I guess I was hanging onto every word my consultant said and now I find it hard to trust him. He also told me I’d go on Zoladex and then nearly changed his mind on that. Plus I have LCIS in my other breast and removal of that one when I recovered from my March mastectomy was also on the cards. Now I’m not sure what’s going to happen.
I’ve found that cancer plays havoc with my emotions and I need to be kind to myself. I’d say don’t beat yourself up about the way you feel. We’ve been through so much and it’s easy to feel vunerable and when you have to rely so much on the expertise of others, it’s hard when things change.
love,
Jacki xx
Hey Jacki,
We’re (almost) the same - was diagnosed with invasive lobular cancer in Feb this year - was 38 at the time - no lymph node involvement, or vascular, had mastectomy with immediate reconstruction in April this year, due to LCIS. Anyway, feel I’ve got off lightly compared to so many ladies on this site, but I am SOOOOOO F****ked up. I live with my three boys and my lovely new OH, whose first wife passed away from secondary breast cancer, and their three children (yes, I know Brady bunch), but since being on tamoxifen, I’ve turned into the cow from hell! It’s almost like being in a parallel universe - I’m watching myseff bing a complete b****h and am wordlessly yelling at myself “stop it - it’s not their fault!”. But I find it so hard to stop.
Anyway, just wanted to say you’re not alone, and if you live in the London area, I’d love to meet up and make each other feel better!
Sally xx
Thanks for your comments particularly Jacki as I to feel upset ( I cant think of another word either). I met the consultant last week but it did not go well. I couldn’t get across to him that I needed to know why I needed radiotherapy 5 weeks ago and now I don’t. I could not understand what he was telling me. He said there was a margin of 1mm from the chest wall, and a margin is a margin? To me 1mm is so small a margin.
It also worries me that because I have an implant how would I know if there are cancer cells left and multiplying.
It’s such a shame because if they hadn’t have said I needed radiotherapy in the first place I would have confidence in my medical team.
He said if I want a second opinion I can have one but he did not look happy. The last thing I want to do is alienate the person who is going to be following me up and making sure I’m ok.
I also feel so guilty because really I’m so lucky compared to so many others on this site but it does not stop me worrying. Sorry about the rambling.
Hi mollyjoemax,
I know how you feel. I was initially told I needed 8 chemos, then when I went for no 3 I was told I was only having six. I was very upset as I felt that I was being short-changed, and suspected budget cuts, and like you I felt all my confidence in the doctors had gone. If I needed 8, then that was what I should have. As it turned out, a junior doctor had got hold of the wrong end of the stick, and I still had the eight but I only found that out when I went for no 4. The whole thing was very unsettling, and I reacted worse to chemo no 3, I’m sure it’s because of the stress of it all.
I too had a 1mm margin as my lump was by my chest wall. I feel much happier having the full works (chemo, rads, tamoxifen, herceptin) with such a small margin.
Hi All
I felt that I had been cheated as well, because my original dx was dcis and that after a masectomy I would need no further treatment. At follow up two weeks later I was told that I would need 25 rad sessions, went to oncologist and he said that I only need 15, and I can’t get to the bottom of the story as to why it has been changed. Also when my surgeon told me about the masectomy he said that he would do an snb through the same incision, when I had the dressing took of I had two scars, one in the arm pit and the obvious one. Even my bcn was surprised when she took the dressing of as she thought there was only going to be one, she was going to find out why for me but as yet she has not rung with the answer. If anyone else has had the same treatment out there that can shed any light on this subject.
Thanks
Heather
Hi Heather
If you don’t mind me asking why was you advised to have radiotherapy following mastectomy for dcis.
My breast surgeon said you only have radiotherapy following wle and as I’d had a mastectomy I didn’t need it.
He didn’t answer the question why his registrar had said that I did though.
I wonder how many other people have had radiotherapy following mastectomy for dcis.
My snb was done with the same mastectomy incision so I can’t shed any light for you.
Sandra
Hi Sandra
I was originally told that I would not need any further treatment other than a mast for dcis. Then after the op and tests had been done, they told me that the dcis was close to my chest wall, and although they had small clear margin, they felt that a course of rads was to be given a a precaution.
Heather