Breast cancer

Hi, 

Sorry to hear. I had x3 surgery first was lumpectomy and sentinel node biopsy which was positive node. They couldn’t clear the margins so went back  for wide clearance and remaining lymph nodes removed 14 removed in total and had one positive node. Unfortunately margins still not clear they described my tumour like an octopus with lots of tentacles so I had masectomy on 20th April. So now all my cancer gone now getting chemo and radiotherapy as preventative measure for not getting cancer. All the waiting is so overwhelming. I hope you get your surgery soon remember phone your breast care nurse that’s what they’re there for. 

For me having a masectomy ok it had to be done and glad it’s all gone. My scars healing really well. I’m very lopsided as I’m a 32E but the softie balances me out. Got appointment for prosthesis 6th July and will see surgeon September to discuss reconstruction.

Take care

xxx

Hi

Sorry to hear you have been diagnosed with bc. Not quiet the same experience as you but I had a mastcetomy in early March and have recovered well. I was more worried about having chemo than having the surgery. I was fortunate to have an immediate implant so not lopsided!! There is alot of advice and different experiences on the site so please keep posting your question/ queries as all the lovely ladies will reply with their experiences. It has been an invaluable site for me.

Hopefully you wont have to wait too long for your mastectomy. Good luck

Linda x

I was diagnosed with invasive lobular cancer in February and have had mastectomy and radiation. They would not do the Oncotype test or recommend chemo (as lobular "doesnt respond well to it). I had two nodes positive and am angry that I was not given a gene test so that I could have had the choice of chemo or not. Am waiting for my 6 week post radiation consulatation with the oncologist I have never met (due to coviid) and I have loads of questions for her. Lobular seems very different to ductal and I don't trust at the moment that I have had the best treatment I could have. Makes me very upset at times. There is a LobSig test for gene testing lobular cancer but I think that is still in trials. Why did they say you couldnt have chemo? 

Hiya , 

Yes, I had lobular cancer and was aware it did not respond well to chemo. I did have chemo, I think it was offered because I was 43 at the time and had lots of positive nodes. I think that there was a little ductal cancer mixed in with the lobular so maybe this made the difference. I too had hoped for a gene test but was refused. I think you need 2 close relatives. My paternal grandmother died from bc and my mother has had bowel cancer, but still I was refused. I was a bit annoyed as my mother was adopted so we had no history from her side of the family. I think you can get a gene test done privately if you really want one - but not sure if it can be done atm. Lobular cancer, although quite sneaky as it does not always present as a lump, is also usually a more slow growing cancer than ductal. Are you also ER+? If so hormone tablets will make a big difference. 

Cwtches, 

Gay xxx

Hi Gay thanks for replying. Yes I am on Tamoxifen as still pre menopausal at 52 although since I started it two months ago I havent had a period. I have heard that Tamoxifen is not as good as Letrozole for lobular but I have to be post menopause for that. I was given no choice about gene testing or chemo and am worried that I may have had a high score and have needed the chemo. I am talking to the oncologist in a couple of weeks or so. 

Hiya ,

I have also read that letrozole is better for lobular cancer. I was pre-menopausal but I was offered zoladex injections to shut off my ovaries and then went on to have my ovaries removed. Maybe you could ask your onc if you could have the zoladex injections so you could then have letrozole? Just think that you have a whole team making decisions about the best treatment for you. 

I have also noticed that you have commented on another post from pollydog - she has not posted since 11 months ago. Just saying this so you are not disappointed if you do not get a response. A lot of people leave the forum after completing treatment. 

Cwtches, 

Gay xxx

Thank you for your reply xxx

Hi

Thank you so much Linda for your information my oncologist mentioned I don't need to have chemotherapy as breast tissue had been sent off to America after my lumpectomy to get tested. It came back low risk so my oncologist said I won't need chemotherapy thank god I don't have to go through that. Im not sure what that test was called, do you know if they automatically do a gene test ?as my mum had breast cancer but I don't know what type of cancer she had. I'm not sure wether the consultant could find out for me. Unfortunately my mum passed away in October last year from other health problems not breast cancer. The thought of having to go through having a mastectomy scares me a lot. I know I've had a lumpectomy and lymph mode removal and the pain from that was awful. So I'm not sure if the pain from mastectomy is the same or worse. I want to have diep surgery but they said the waiting list is 18 months and my oncologist doesn't want to leave me that long. So I chose to have immediate breast implant after mastectomy. Can I ask you what your experience has been like having had immediate breast implant. How did you feel ?and how did the breast implant feel after surgery. ?There's lots of thoughts running through my head what if it doesn't work out and i have a reaction to implant,or is there a problem with breast implant  boob looking bigger than the other ? I'm 57 now and the good boob is going South anyway ha ha. Will I ever except my false boob? I believe part of the operation I will be left with drain to drain fluid. Did you have that? Sorry it sounds like I'm asking a lot from you from your experience. I hope you have recovered well and not in too much pain now. You're so brave to have gone through this, as are all the other women on here that have gone through similar and far worse experiences. 

Thank you 

Georgina xxx