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neuroendocrine breast cancer

Posts: 1
Joined: Sep 2013

Hi everyone

Have just joined and wanted to share my story and encourage fellow sufferers.

I am 71, married and birth country is England, but hubby and I retired to live in the South of France November 2004.

May 2005 one wonderful weekend - I discovered a rather large lump in my right breast.

Hot footed it to my new GP in France who sent me for an xray and scan - got appointment for next day.  These showed I had a rather large lump.  Back to GP who said I needed to get it looked at and where did I want to go!!!!!!!  Silly question really as we had only been here a few months. So I asked him where he would go.  So he made an appointment for me at a large Teaching/University/Reaserch hospital in Montpellier - a large town about an hour's drive from us.    Went there about 2 days later for a biopsy.  Then had to wait a week for an appointment with the consultant, who confirmed it was a cancer.

What I was told was that it was a neuroendocrine cancer and that it had probably been there for some time as it was quite large but it was a slow growing tumor.  Consultant said I needed a mastectomy as he would have to cut away a large amount of tissue around the cancer and it would not leave me with a lot left, even though my boobs were ample.   Apparently this type of cancer was, and still is, very rare

Two weeks later it was all done and I was home within 10days;  no pain or anything.  But that was not the end.  Even though it was a big research/teaching hospital they had never seen or treated anyone with this type of cancer - I was their "first" - so they had to go away and consult as to how to treat it.  I ended up having Cisplatin - a very nasty chemo and had to stay in hospital 3 days every 3 weeks for 6 sessions.  In the end I only had to have 4 as enough toxins had built up in my body in a short time.  Thank goodness as I had started to be very sick and horrid at the end of each treatment.   They took a full body scan and confirmed there were no other tumours so the breast one was the main one & they got it.  I was told the prognosis was good.   They also took away 10 lymph nodes and only 4 had been infected.

Chemo was followed by radio therapy, which was OK.  And then I was put on Tamoxifen.  But had to come off that as it made me very unwell and I thought I was going mad.  Stopped Tamoxifen for a month and symptoms disappeared.  Was then put on Aromasine and all was well.

The GOOD NEWS - I am no longer on Aromasine - after 7 years free of Cancer the oncologist said I did not need it any more.

I think I was very lucky to have that kind of cancer, even though the hospital did not initially know how to treat it.  I think it was discovered in time and treated excellently and that is why I survived.

I do not have any fear that it will come back; but that is not to say cancer will not occur in another part of my body, but will deal with that if and when it happens.

Because I now have Diabetes 2 I get my blood checked every 3 months and look out for any tell tale signs that something is amiss.  I only see the oncologist once a year until 2015 and then every 2 years.

The downside is that I think the chemo Cisplatin was more invasive than the cancer as I seem to have extreme reactions sometimes to normal drugs.  But what the heck - I'm alive and in reasonably good health.

I would be interested to hear of anyone else who may have had this kind of cancer.

Because I have diabetes I am researching about the Endocrine System because it was an Endocrine Cancer and was contained in an Endocrine gland in the right breast.  I am still not sure if there is a connection.  If anyone can enlighten me I would appreciate knowing;



coco2008's picture
Posts: 420
Joined: May 2013

I don't know anything about this BC, but I wanted to welcome you.  I am very happy your treatment was so successful.  Continue dancing with NED (No Evidence of Disease).


Posts: 1255
Joined: Oct 2011

Sorry, if I am not much help either. It is always encouraging to hear when someone is doing well though, thanks for sharing and I hope all continues to stay as you say "reasonably" well or better!

About 1.5 yrs ago I too was diagnosed with a very rare breast cancer. " Secretory carcinoma," a slow growing cancer also and accounts for less than 1% of ALL breast cancers. My doctors/pathologists had not seen it before either. It is often not seen on mammograms and was estimated that I had it for 10 or more yrs. Treatment was a mastectomy, I did both breasts. For me this diagnoses came just 1 yr after treatment for Stage3 anal cancer for which I had surgery, chemo, and radiation. The breast cancer was found on my one year follow-up PET scan.

The chemo I was given for the anal cancer was also cisplatin, and I had a rough go with it! I have read that it is sometimes called the penicillin of chemo drugs because of its ability to succesfully treat a wide range of cancers. I too consider myself to be in reasonably good health these days with what for now are manageable long term side effects.

I hope you find some helpful information on your search about the endocrine system. A while back I checked in on breastcancer.org ............ on the discussion board there is a drop down bar with less common or rare cancers. I did find 2 other people that had the same as I, but it seems to take quite long to get a response. It may be worth a check though.

Well, again, welcome and I will keep you in my thoughts and prayers for good health.

Posts: 11
Joined: Sep 2013

My father died from neuroendocrine cancer, but his primary tumor was in the lung.  It is a rather rare cancer, and is related to gut and other endocrine cacncers.  To have it show up in the breast is an odd presentation, to my knowledge.  That is why my biopsies and slides went to several different pathologists, to be absolutely sure of my diagnosis. 

Posts: 1
Joined: Jul 2015

I have been recently diagnosed with this.  Was interested in your post found it encouraging. I have had a lumpectomy and the pathology results show low grade tumor.. Had sentinel node biopsy which showed small amount of cancer in 1 of 4.  completed bone scan yesterday and first appointment with Radiation Oncologist tomorrow then Medical oncologist Aug 5, 2015.  Can you explain why you were hospitalized during chemo?



Posts: 1191
Joined: Dec 2010

You more than likely will not be getting a reply from the original poster for this thread. They posted once and it was in 2013. Sorry.

You could try breastcancer.org, they have a section for rare breast cancers and is a good, reputable site.

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