May 14, 2014 12:23PM - edited May 15, 2014 04:06PM by leaf
Posted on: Apr 16, 2014 10:18PM
I'm feeling a little lonely here. I know we're less than 1% of all breast cancers and endocrine tumors. Any one else with this diagnosis? There is very little to find out about it on-line. They're mostly treating me like any other BC but I was reading today that maybe we should be getting genetic testing done for targeted therapies. The one study (100 case reviews over a 10 year period) my MO gave me showed a very low re-accurance rate so that's good news. Join me on this fight and we'll can support each other.
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May 14, 2014 12:23PM - edited May 15, 2014 04:06PM by leaf
May 29, 2014 06:06AM Badgerboo wrote:
Hi, GraceB1, yes - primary neuro-endocrine tumour diagnosed in July 2012. Had lumpectomy, axillary clearance (8/10 nodes positive), chemo and radiotherapy - now on tamoxifen (100% ER and PR +ve). After massive (seemingly endless...) amounts of discussion between breast onc. and neuro-endocrine onc teams (I live very near a specialist centre), I ended up getting chemo from N.E team - cisplatin, streptozocin and, er, can't remember the other one (fluorocil?). Now under the breast onc team. I don't know anything about the genetic testing for targeted therapy - can you let me know the references?
What's your history?
May 30, 2014 03:19PM 2timer wrote:
Was Dx July '13. After Surgery in August found that the tumor was a neuro-endocrine tumor. I consulted with 2 major cancer centers (Ohio State and MD Anderson). Oncologists at both centers said it was a breast cancer with neuro endocrine features, not a neuro-endocrine tumor in my breast. So I got the standard AC/Taxol bc chemo treatment. I read the study you referenced and while I was happy these tumors were slow growing, mine was 8 out of 9 for aggressiveness. I'm currently on arimidex and finished chemo in January. Good luck.
Jun 2, 2014 04:10PM - edited Jun 3, 2014 04:39PM by GraceB1
I had a 6 cm tumor, 3 lymphs per pet scan, chemo, (A/C,T). At my SMX, the tumor was down to 4 cm and only 2 lymph+ out of 11. Radiation and now anastrozole. 100% ER+, 12% PR+.
I wasn't DXed until after chemo and a SMX. The preliminary biopsy path reports said I had endocrine components but we didn't realize until the path report from the MX that I was a primary neuro-endrocrine case. I keep thinking that if I had a genomic test done first that I would have received a different chemo regime. The A/C seemed to decrease the tumor by a third but all the taxotere did was make me deathly sick. When you're diagnosed things are so rushed to make decisions that I just trusted my Dr. to do the right thing. I remember asking the Dr. what kind of BC did I have and he looked at the path report and shrugged his shoulders and said the report didn't say. He wasn't concerned at all about it. I didn't know that there were other options available. See the following link. http://knowyourbreastcancer.com/breast-cancer-stu...
It seems that the difference between being a primary and one with features is the 50% mark. If they find more than 50% endocrine in the breast tissue then it's a primary.
I started anastrozole last month and outside of insomnia I'm doing OK on it.
Aug 27, 2014 02:04AM Herbert1 wrote:
hi there. I was diagnosed in nov 2013 after a liver biopsy. Tumors are diffusely through my liver. I was told it was neuroendocrine small cell carcinoma, breast primary on the table as I was going in to get my port! So yes, I hear you about the rushing! I was immediately started on carboplatin and etoposide. 6 rounds cleared my 7mm breast tumor and shrunk my liver tumors/turned to scar tissue. I had a second opinion at Johns Hopkins where the bc specialist googled my diagnosis in front of me and then told me I was probably never going to achieve remission. I went to Roswell cancer center in Buffalo where they actually gave me some hope (I'm 36 and have a now 1 year old at home) and said the tumors were NOT neuroendocrine but had their features. Very frustrating to be told a million different things. However, I am lucky in that mine is estrogen positive. I now take tamoxifen and get a lupron shot once a month. My cancer is stabilized. I have some liver pain, but my scan was unchanged as of last week.
Jun 3, 2015 01:20AM NATSGSG wrote:
hello @GraceB1 and fellow members:
Hope this message finds everyone well and recovering....just stopping by to share this link that provides 1531 scientific articles of neuroendocrine carcinoma of the breast that I hope will be informative and useful to you. May need to sift through the titles to find the ones pertinent to you.
In the meantime, please consider visiting and/or writing to the Society for Immunotherapy of Cancer (SITC) to find out if any institution or organization has started using immunotherapy to treat this disease? And perhaps having them add you to their mailing list to keep you informed of any new developments in this area?
Below VIDEO link talks about the use of immunotherapy in cancer treatment (current hot cancer treatment topic). Fascinating to watch. useful to know.
Have a fantastic summer and sending everyone lots of wishes daily, and enjoyment in your readings..@@!!@@
Jun 3, 2015 08:54AM GraceB1 wrote:
Thank you so much for all the links. I will work my way through all them. This is a lot more info then my 2 MOs gave me. The graph results are still spotty for me because they don't differentiate among the various types of PNEC. Mine is not small cell and therefor less aggressive than some of the graphs show. They also don't take into account hormone or chemo therapy as far as life expectancy. They do make me wonder if I should have had radiation or if that was of no befit. Right now I'm NED and having a DIEP surgery tomorrow. This will give me some reading material over the next couple of weeks. Again, thanks so much!
Dec 5, 2015 10:03AM Mtnlife wrote:
In April of 2015 I went to my primary physician because of terrible back pain. X-rays, followed by MRI, Mammogram ( lump found in right breast) and a biopsy and finally after several labs examining my tissue sample, I was diagnosed with Neuro Endocrine Carcinoma of the Breast with matastisis to the spine, ribs and sternum. I am being treated with Anastrosol, monthly infusions of Zolmeta and Vicodin for the bone pain. I have been feeling quite alone and been looking for others with this diagnosis to find what has been their course of treatment. During my 1st visit to my oncologist I handed him all the literature I had found on the Internet. He had treated Neuro endocrine cancer in other parts of the body but I am his first patient to have it in the breast. I appreciate the links posted here.
Dec 5, 2015 10:33AM Moderators wrote:
Dear Mtnlife, Welcome to the BCO community. We are sorry that your diagnosis brought you here but we are glad that you reached out. Please stay connected and keep us posted. The MOds
Dec 5, 2015 11:01AM cuddyclothes wrote:
I don't have that diagnosis. But I stumbled across this and wanted to give you a cyber-hug.
Good luck, and I hope you find others like you!
Mar 1, 2016 09:36PM luvmysil wrote:
Hello, I'm writing on behalf of my sister-in-law. She was diagnosed back in June of 2015 with small cell neuro endocrine primary tumor of the breast. She had chemo almost immediately (not sure what kind) and the tumor nearly disappeared off the scan prior to her surgery in December 2015. Surgery path discovered a secondary BC, so the plan for radiation was halted to start a different chemo. Then in early Feb a spot on her skin appeared at the surgery site and that was cancer. That chemo was stopped and she was immediately started on radiation. Last week a scan showed a spot on her liver and possibly one in her lung. She's been treated by her local hospital outside of Chicago and her oncologist originally consulted with docs at Northwestern Hosp in Chicago. She and her husband are completely overwhelmed by this finding and I'm helping them locate options for a second opinion and/or to move her treatment. My question is whether anyone has experience with the The Neuroendocrine Program at Ochsner Medical Center/LSU in Louisiana and with Dr. Eugene Woltering. Or any experience with Neuroendocrine Cancer Clinic at the University of Iowa ? They appear to have received "the only Neuroendocrine SPORE (Specialized Programs of Research Excellence) grant in the country – a grant consisting of four independent NET research projects and clinical core facilities – from the National Cancer Institute." Mayo Clinic is an option too. Thank you in advance for any insight you can share.
Mar 2, 2016 08:48AM Moderators wrote:
Hi luvmysil, welcome to Breastcancer.org! We're sorry for your sister in law and what brings you here... but glad you found us! We hope the forums are helpful and easy to navigate, and that you get some answers soon!
Please let us know if we can be of any assistance!
Mar 3, 2016 02:45PM GraceB1 wrote:
This is such a rare BC that if you found someone who says that they know anything about it, you should go to them for a second opinion. Hopefully they can come up with a plan of treatment that she can receive near her home. Sorry I can't be of more help to you.
Jan 20, 2017 10:19AM bconsolo wrote:
checking in on sister in law. I reside in Illinois and was diagnosed with small cell breast in 10/16. I am nearing the end of my chemo treatment (A/C +Taxol). I got my 2nd opinion from Dr Cobleigh at Rush and am being treated at Good Shepherd. Where did your sister in law continue her treatment? So far my cancer is contained in the breast, and no lymphnode involvement but my surgery will confirm 100%. I would recommend seeing Dr Cobleigh at Rush, it's local and she is a world renowned Breast Cancer Oncologist. Please keep us posted on your sister in law, hoping that things have improved and that she I saw doing well.
Jan 20, 2017 10:33AM KBeee wrote:
A good friend of mine has neuroendocrine cancer, stage 4. Some neuroendocrine cancers act more like endocrine tumors; University of Iowa doc seems to be expert on those. Some act more like traditional cancers. Mayo doc seems to be expert on those
May 16, 2017 07:00PM LJ1 wrote:
I was diagnosed two months ago and have been searching for answers. They say I have neuroendocrine breast cancer, but it's definitely breast cancer, not small cell. From the little I can find, that's good, although the overall diagnosis is not. I'm stage 2a -- small tumor, 1 lymph node, ER+, PR+, HER-, genomic testing shows high risk of recurrance
I had a lumpectomy and the margins were not clear so had a second surgery. Now I'm in chemo (4 cycles AC/4 cycles of Taxol) and then will have radiation followed by 10 years (god willing) of endocrine therapy.
My onc says this behaves like BC, not like a classic NET, and that I should relax. She has treated them before and that I have a good chance. So, trying to stay positive, but the lack of info is very off-putting.
I got a second opinion, and he concurred, so I feel pretty okay...
Not sure if this helps anyone, but I like knowing there is at least a small group to turn to!
May 16, 2017 11:05PM Moderators wrote:
Welcome, LJ1! We're glad you've joined us here, and have found at least a small group to share this with and hopefully gain support and advice from. We can understand how the lack of information can be concerning, but it sounds like you've got a solid team working on your behalf! Best of luck with your continued treatment!
May 17, 2017 12:52AM sbelizabeth wrote:
I have two sisters--one was diagnosed with triple-positive IBC five years ago and is well today, the other was diagnosed with neuroendocrine BC last fall. She's about to be finished with chemo and will have a PET scan before her mastectomy in June. I'd never heard of neuroendocrine BC before my sister's diagnosis.
May 17, 2017 08:11AM GraceB1 wrote:
Your sister's treatment plan and mine sound very similar. We didn't realize I had NET until my pathology from my MX came back but I'm unsure it would have changed anything. They do treat NET just like any other BC. I haven't had genetic testing done and now I wonder if I should or if it wouldn't change anything either.
May 17, 2017 10:41AM sbelizabeth wrote:
GraceB1, with all the breast cancer in our family, my middle sister and I did genetic testing. We were both negative for any known mutations. But I'm very glad I had the testing done--now I can tell my sons that as far as I know, they aren't carrying any genetic mutations that would predispose them, or their children, to these cancers.
Genetic testing doesn't change treatment, unless it's for preventive reasons or it turns up with a mutation that's known to lead to ovarian or colon cancers, and then you can be extra vigilant.
May 18, 2017 08:22PM - edited May 18, 2017 08:25PM by 2yorkies
Bconsolo. .....I was also diagnosed with small cell breast cancer on 6/1/16. I had 6 cycles of carboplatin and vp16, with NED on scans. Cancer in left breast and one lymph node. I completed chemo on 9/29 , and had bmx with lalnd on 11/2. NED on surgical path report. Then began radiation end of December and ended 3/4/17. Final surgery was on 3/21/17 to exchange expanders to implants. I also tested negative for genetic mutations. I was treated at Florida cancer specialists, who also had treated two other similar cases. Last PET scan 4/20/17 negative for disease. Just wondering how you are doing with treatment??
Feb 25, 2019 10:41PM bennybear wrote:
looks like my diagnosis just changed to neuro endocrine. I too am looking for more information.
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