Hi. I have been diagnosed with my 4th breast cancer. 1st one being in 2001. It was stage 2 lobular cancer and multi focal so had a mastectomy, removal of lymph nodes on that side, radiotherapy and chemo. Was on tamoxifen for 5 years. Was clear until 2012 when i had a recurrence in 2012 - was just localised so just needed minor surgery. Continued on tamoxifen. Then in 2019 had another recurrence-again just localised. Same treatment as before but put on letrozole as tamoxifen had obviously stopped working. This 4th one is different - oestrogen negative (triple negative). Still lobular but has gone to a couple of lymph nodes in my chest wall so having to have chemo but not allowed radiotherapy as they dont like you to have it more than once. The chemo i will be on is capecitabine (tablets). Has anyone else had this one? The strange thing is - all my cancers have been in the reconstructed breast (DIEP Flap) so obviously the original surgeon left some cancer cells behind when doing the mastectomy. My left breast is fine. Also when i spoke to the oncologist he said i didnt have triple negative breast cancer but my consultant said i did. Its all very confusing.
I’m so sorry to hear about your recurrence @shiveringdachshund57 and the confusing messaging you’re getting.
I hope another forum member will have an experience they can share with you. In the meantime, if our nurses can help clear up some of these questions, you can reach them here on the forum on this part of the forum: Latest Ask our Nurses your questions topics - Breast Cancer Now forum. They’re also available on our free helpline 0808 800 6000 which is open Monday to Friday 9am-4pm and 9am-1pm Saturday.
We’re thinking of you,
Lucy
I do not like contradictory information from doctors in the same team regardless of their roles. I would probably contact PAlS which you can ask to take up your complaint so they can improve their service. After all you have been diagnosed four times! That is so Unfair…
I have only been diagnosed twice first in 2003, second in 2022
I felt very annoyed. Doesn’t make any difference though. I had to get on with it. I had breast conservation first time and diep recon second time.
My tum is flat but it doesn’t really feel right but too late now. The fat has been harvested along with some blood vessels that are now attached further up. I find it all deeply depressing but at least I can fly.
Seagulls
Thank you for replying. Yes, i was very annoyed at the first consultant i saw. She said I had stage 4 triple negative metastatic breast cancer. I was a bit in shock so wasnt really thinking straight when i should have asked - how do you know its metastatic when i havnt even had a CT Scan - are you psychic? When i spoke to the breast care nurse on the phone the next day i mentioned this and she admitted she was a bit confused at that as well. Anyway thank god it hasnt gone to the major organs like liver, kidneys, bones etc - just these couple of lymph nodes. When she told me it was stage 4 she was like - sorry about that. No compassion in her voice or anything. Now the oncologist is saying its not triple negative either. Its HER2 low according to the letter from the oncologist that was sent to my doctor - which doesnt really mean much to me apart from, according to google, its a better prognosis than HER2 zero. Also he said that they class stages of cancer as what the first cancer was so Im stage 2 and not stage 4. Im seeing the chemo nurses on Thursday so ill be asking them some questions.
Dear Shiveringdachshund57,
What a journey you have had, so many different experiences, let’s hope on Thursday you get the answers you need, try to make some note beforehand, as we all seems to forget the most important questions.
We are all here with love and support, please let us know how you’re getting on.
Wishing you well, for a good outcome.
Love Tili 
Thank you.
Yes i will definitely write my questions down when i go on Thursday.
I just hope i dont get too many bad side effects. I kind of breezed through chemo in 2001 - just felt a bit spaced out (nothing new there 
) and some heartburn.