I can't help you regarding the cancer in the breast as it is my husband who has got it in the pancreas and various other places. I find this forum difficult to follow with not much activity for this cancer.
Have you tried netpatientfoundation.co.uk. I find it easier to follow and I know there are people who have posted on there who have it in the breast. It has been a bit quiet of late but I'm sure if you post, someone will answer you in due course. You could also look back through the posts although that may take a bit of time.
Hi Steph
Sorry that I can't help either but like Ann my father has it in his pancreas.
Ann
I am very new to this site but please message me if you would
like to chat. It's hard to find people going through the same thing. xx
I have been diagnosed with Primary Neuroendocrine of the Breast. I had my 70 mm tumor removed 4 weeks ago. I have now been referred to Beatson in Glasgow and i ha e my first appointment on Monday 22nd May. I dont know too much about the disease but im learing all the time. Happy to share stories with you.
I have also recently been diagnosed with Breast Neuroendocrine. Are you happy to discuss your situation with me as so far i dont know anyone else with this yet?
Hi all, sorry to hear about your diagnosis. I don't see many NETs in the breast, it's a very unusual location for this less common type of cancer. The only one I can think of is a lady in USA. I monitor various sites so will keep my eyes open for you.
Good luck with your treatment. Just out of curiosity, are you seeing a breast specialist or a neuroendocrine specialist?
Hi Ann, definitely! I was diagnosed in 2015 and had lumpectomy and they sampled two lymph nodes to see if they were clear. My tumour was about three and half cm and was poorly differentiated. I then went on to have TAC chemotherapy followed by 23 sessions of radiotherapy. To answer Ronnie's question it was discussed at both breast and neuroendocrine mdt's and neuroendocrine mdt said to treat it as breast. Very happy to talk as we are a very rare entity. My advice is don't go looking on the Internet there isn't anything other than research papers which doesn't make good reading. Take each day as it comes. I finished my treatment in November 2015 and have been back at work since January 2016 and am now back full time. It's a hard journey but if ever you need to chat just give a shout xxx
I had primary tumour removed in May 2011. Nuclear said all clear,but it was not. No follow till 2015,when another Nuclear scan revealed that it had spread to liver,right kidney,right lung,upper right arm,sternum, pelvis,and latest nuclear scan a year ago added both collar bones to the tally.
I am on 120 mg of the drug Lantreotide for the last two years,lucky with no side effects to speak of. Still garden,and play golf,but can get flushing and fatigue.
On top of this I look after my wife who has terminal ovarian cancer.
If I can be of help to anyone out there, please get in touch.
I can't speak for Ann but as I answered to your previous question I was discussed in both neuroendocrine and breast and the decision was to treat as breast which the did with surgery,TAC chemo and radiotherapy. I did question my follow up if breast or neuroendocrine but was told by professor newall from neuroendocrine to ignore the neuroendocrine side. Not sure I am completely confident in that decision with it being a rarity. Work as a Macmillan Head and Neck Cancer Nurse Specialist so know how to challenge decisions. Lisa
I am actually going between the two. I was discharged from my local hospital and referred to Neuroendocrine specialist who decided on my treatment which is currently chemo - however i developed a seroma which is basically fluid so i am now also back at breat clinic re this.
