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Topic: Invasive Secretory Carcinoma

Forum: Less Common Types of Breast Cancer — Meet others with less common forms of breast cancer, such as Medullary carcinoma, Inflammatory breast cancers, Mucinous carcinoma (colloid carcinoma), Paget's disease, Papillary carcinoma, Phyllodes tumor, Tubular carcinomas, Metaplastic tumors, Adenoid cystic carcinomas and Angiosarcoma.

Posted on: Feb 25, 2013 01:48PM

VeganNicole wrote:

I was recently diagnosed with invasive secretory carcinoma. I just turned 33 years old. My gynocologist found the lump at my annual exam.

This a very rare type of breast cancer. If anyone else has had this kind of cancer, please let me know! I'd love to know about your treatment.

My surgeon is recommending a mastectomy based on the location of the tumor (right behind my nipple) and the size of my breasts (small B cup). This kind of cancer is apparently always triple-negative. Based on further analysis of the biopsy sample showed that it does have the usual characteristics of a triple-negative cancer so my surgeon is requiring chemotherapy after surgery. 

Surgery will see if the cancer has spread to the lymph nodes; if so, I will also require radiation. 

I think I'm going to opt to do a double mastectomy for the following reasons: lower risk of recurrence, make future follow up care less complicated (no need to do a mammogram on the side with breast tissue remaining, in addition to MRI), and my reconstruction can be more symmetriclal. (I was planning on having an implant added to that side to upgrade my size a little bit.)

I'm curious about the recovery from a double mastectomy, but I'll go read through some of the other forums for that information. Just please contact me if you've had this kind of cancer!

Invasive secretory carcinoma Dx 1/31/2013, 2cm, Stage II, Grade 2, ER-/PR-, HER2- Surgery 3/12/2013 Lymph node removal: Right; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
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Feb 25, 2013 05:25PM Moderators wrote:

Hi Nicole, and welcome to

Using the Search feature here on the discussion boards to look for other posts that had mentioned "invasive secretory" and found a few, but from back in 2009.

You will definitely find more information and support about double mastectomy in the Surgery - Before, During and After forum, and in the Surgery section of the main site.

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Feb 25, 2013 09:34PM VeganNicole wrote:

Oh yes, I definitely did a search on here first; the results for "invasive secretory" were not helpful at all (and this has nothing to do with how old they are)... only references to that one 10 year old girl who had it, or people mentioning it, but no one who's actually had it themselves.

I've been reading through the Surgery section to get an idea of what to expect in a few weeks! Thanks!

Invasive secretory carcinoma Dx 1/31/2013, 2cm, Stage II, Grade 2, ER-/PR-, HER2- Surgery 3/12/2013 Lymph node removal: Right; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
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Feb 26, 2013 07:10PM tsstone wrote:

I was diagnosed with stage 2 invasive secretory breast cancer 5 years ago at the age of 35. I opted to have a double mastectomy and did implants.  I had to have chemo based on onco dx test.  From my research on secretory breast ca, chemo doesn't work so I feel that it was a waste at times.  My tumor was slightly estrogen positive.  I did not have any positive nodes.  The double mastectomy surgery is NOTHING compared to chemo.  I did the double mastectomy for several reasons.  One was that I didn't want to have radiation.  The lumpectomy has a higher rate of local recurrence and my research said that a mastectomy is best for this type of cancer because it does have a high rate of local recurrence.  They will tell you that the overall survival rate for lumpectomy versus mastectomy is identical but their research doesn't take into consideration that a person may die of heart failure or lung cancer as a result of the radiation.  I am a registered nurse and seen examples of this.  I did not want to be diagnosed with breast cancer again.  I had healthy breast removed so I wouldn't have to have mammograms and biopsies for every little suspicion spot they found just because of my history.  Also I wanted to be symmetrical and didn't want to have healthy breast operated on to make it look the same as the implant side.   I will be happy to answer any of your questions to help you.

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Feb 27, 2013 08:34AM VeganNicole wrote:

Oh my gosh - I am so excited to find someone else who has had this! (Although it's awful that we have had it in the first place, of course!) Your plan for treatment and your reasons for the double mastectomy are exactly the same as mine! That's comforting to know.

I didn't choose to do a lumpectomy because my breasts are too small; I want to reconstruct them so I can feel comfortable again in a bikini after this is all over!

Why do you feel that chemo didn't work? (According to my "targetprint" genetic analysis results, my tumor is fully triple negative.)

Did your doctors give you any statistics on the likelihood of recurrence, or the long-term prognosis? I met with an oncologist yesterday and she said the secretory cancers are going to be lumped with all other triple negative cancers in studies. She said they would treat me with adriamycin and cytoxin for the first 4 treatments, and then taxol for the second 4 weeks. She said my hair would fall out right after the second treatment.

Invasive secretory carcinoma Dx 1/31/2013, 2cm, Stage II, Grade 2, ER-/PR-, HER2- Surgery 3/12/2013 Lymph node removal: Right; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
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Feb 28, 2013 11:12PM tsstone wrote:

I just feel this way based on the cases that I researched online. Plus this is a slower growing cancer and chemo is more affective on rapidly growing cells. This is just my opinion, but I feel that they should do chemo before the surgery to remove the tumor to determine which chemo will work best by monitoring the size of the tumor. I am not sure about the statistics. It was bases on the results of the onco type dx test and I didn't have a very good oncologist. It seemed more like I was given a score. I will see if I can find out in my paperwork. I encourage you to do research. I also had 8 rounds of chemo. I am glad to help answer any questions. This is a very rare cancer. From what I have read, the prognosis is good! I will keep you in my prayers. I pray for a cure for cancer every night.

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Mar 13, 2013 11:30AM eihtak wrote:

Hi, I am new to this forum but am a member on CSN so have been posting there occasionally. One year ago I had a double mastectomy for what was diagnosed as "Infiltrating" Secretory Carcinoma of the left breast. Is infiltrating the same as invassive?? This came just one year after completeing treatment of chemo/rad and colostomy surgery for Stage3b Anal Cancer!! The BC was found at my 1yr follow-up PET scan for the AC. I did not receive chemo or rad for the breast cancer but am taking Anastrozole (Arimidex), since my BC was ER+. I will be on this for at least 5 yrs or more if no problems. I chose to have the double mastectomy for several reasons and have no regrets so far. I wanted to lessen the chance of another BC, I am 54yrs old, smaller build and exercise often and wanted that whole symetrical feeling. MY mom died of ovarion cancer so went through genetic testing to see if I carry the mutated BRAC gene....I don't.

My real question here is, since this is such a rare cancer I am having a hard time finding info on standard or protocal follow-up treatment for this cancer. How often should we be scanned, x-rays, MRI's etc., and for how long? What do we watch for in terms of recurrance or another type of BC? What are the chances of that? I feel great and am pleased with my surgery, but even my Onc. seems a bit vague on follow-up, though I am still scanned often and examined for the AC.

I am sorry to have to meet like this, but also in a way reassured to find others with the same thing! I will pray we all move forward in health!!!!

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Mar 13, 2013 03:45PM VeganNicole wrote:

Hi eihtak,

I just looked it up and invasive and infiltrating are the same thing. I'm surprised that you were diagnosed with it in your 50s - I read that it used to be called juvenile carcinoma because it would occur in younger people when it did occur at all. How tough that be for you do have cancer a second time! 

I had an MRI to see if the cancer could be seeen anywhere else, and they said it looked good. I just had a bi-lateral mastectomy yesterday and I'm back at home now. I left the hospital confused, too, about conflicting info the many doctors and nurses said. (Do I stay relatively still for the first 4 days, or do I become active right away (but just no heavy lifting)?) 

As my cancer is triple-negative they said I should have chemo, so that's what I'm going to do. It will start either 3 or 4 weeks from now (again, I'm getting conflicting information). They couldn't tell me what the exact prognosis is, or what the recurrance rates are - they said ICS would be lumped into research with other triple-negative cancers. Very frustrating. But I decided to go ahead with the double to reduce my chances of it coming back, and to make future checkups easier. (And for symmetry reasons.)

OK, I think it's time for a nap! Thanks for writing - stay in touch!

Invasive secretory carcinoma Dx 1/31/2013, 2cm, Stage II, Grade 2, ER-/PR-, HER2- Surgery 3/12/2013 Lymph node removal: Right; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
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Mar 13, 2013 04:49PM eihtak wrote:

Hi, and thanks for responding. Do be sure to rest. I came home with four drains that were not painful but very annoying. Do you have drains in? Try not to do much lifting or stretching for at least a couple weeks even if you are feeling good, I have heard from people that ran into problems when doing too much too soon after their mastectomy. In time though I saw a physical therapist to check for lymphedyma and she gave me some really good stretches to do. Now a year later I have full range of motion and do stretch/yoga almost daily. I am pleased with my surgery and did not have reconstruction.

I did read that this was a juvenile cancer and also found in men. My doc estimated I may have had it for ten years and went undiagnosed on mammograms. I will always wonder what would have happened if I did nothing, but am not that much of a gambler.

I will keep you in my thoughts with the chemo part of your treatment. I have been down that road with my anal cancer and although some seem to handle it better than others I had a rough time. Chemo drugs are different for different cancers, and no two people react the same, so lets hope for the best.

I will keep in touch, again, rest,rest, rest........

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Mar 15, 2013 04:05PM VeganNicole wrote:

Yup, I have drains in and they are indeed super annoying!! I'm trying to keep myself from doing too much after surgery but it's hard to just sit on my butt... I've been getting up and walking around the house, but I felt a bit lightheaded and nauseous just a bit ago so I layed down and had my husband bring me some soup. I think the problem was that I should have eaten lunch earlier in the day.

It's strange to feel bored on one hand, but then when confronted with other things to do like watch Downton Abbey or read a book, I don't feel like doing those things either. I'd better get used to chilling out though - I'm off of work for another full week! Wish I was in recovery someplace tropical instead of in the suburbs of DC!! :)

Invasive secretory carcinoma Dx 1/31/2013, 2cm, Stage II, Grade 2, ER-/PR-, HER2- Surgery 3/12/2013 Lymph node removal: Right; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
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Mar 17, 2013 12:46PM eihtak wrote:

Hi, just thinking about you and hoping all is going well. I remember that first week after surgery, I felt pretty good, but was told to take it easy anyhow. We were having a new patio door installed and I made lunch for the guys working on the house and cleaned up after them. Everyone was so worried that I was doing too much.....I just tried not to lift or stretch for anything heavy. You'll feel so happy to get those drains out. Everyone is different but I had 4 drains, 2 came out in about 5 days and the other 2 a week later. I have heard of some having them in for over a month! I agree with recovery in the tropics, I'm in Wisconsin....just got more snow yesterday! Anyhow, take to you soon.

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Mar 18, 2013 08:05PM tsstone wrote:


I am glad your surgery is over and it sounds like you are doing well.  My husband deleted the email and I couldn't figure out how to get back here.  I have been thinking about you and praying for your recovery and a good pathology report.  You will feel alot better once the drains are out.  I can't remember what restrictions I had but I do remember it took some time.  I have full range of motion with my arms now but it did take some work.  I think that the doctors don't really know how to treat this type of cancer because it is so rare.  My dr treated me like any invasive ductal breast cancer is treated.  Me and my mom were going thru breast cancer at the same time and her treatment was the same as mine even though it was a different type of breast cancer.  I don't know what type she had just that it was invasive ductal also.  But I know that it wasn't secretory.  We both had the same oncology doc.

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May 14, 2013 05:06PM Kellycat24 wrote:

Hi ladies I hope you don't mind me jumping in on this post and hope your health is good! I just had a question as my mum had this cancer (passed away now - not from the cancer!) and she used to go on about genetic counciling. Now I've had that and this is how I found out my my mum had juvenile cancer. They said I didn't need any further checks/tests my risk was as anyone else's. I was wondering if u knew if this type of cancer has anything to do with brca1/2? I don't think it is otherwise I assume that I would have got a blood test? But now I'm a bit worried I maybe should have pushed for it a bit more? I know it's a hot topic at the moment as well. Thank you

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May 14, 2013 05:14PM Moderators wrote:

Welcome Kellycat, 

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May 14, 2013 06:11PM VeganNicole wrote:

Hi Kellycat24 - I don't think that this type of cancer has been linked to the BRCA gene (if it has no one has said anything to me about it!). I was tested for the BRCA 1/2 genes and my tests came back negative.

I met with a genetic counselor at the recommendation of my oncologist, but she didn't think my family history was worrisome (I only have one aunt who's had breast cancer (invasive ductal carcinoma), and my grandmother had colon cancer in her 70s). If my insurance benefits change and I can get tested for the second part of the BRCA gene test (called "BART") at a reduced cost, I will do that, but for now I'm just going to sit tight. I'm only 33 and I had a bilateral mastectomy, so if I were at higher risk of developing ovarian cancer, it's not something that's likely to manifest itself for many more years anyway. (Or at least I think that's what the counselor said.) 

Invasive secretory carcinoma Dx 1/31/2013, 2cm, Stage II, Grade 2, ER-/PR-, HER2- Surgery 3/12/2013 Lymph node removal: Right; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
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Mar 29, 2014 10:42PM jogyger818 wrote:

Hi everyone!  I am new to this forum.  I was just recently diagnosed with Invasive Secretory Carcinoma of the right breast and had a lumpectomy.  An MRI was performed last week and it looks like I am clear in that breast but the left breast looks suspicious.  My surgeon was talking radiation on the right and a lumpectomy on the left.  I had a lumpectomy 4 years ago on the left and it was benign.  I told him I did not want radiation or another lumpectomy, but wanted a double mastectomy so that I don't have to keep facing the worry and these lumpectomies.  He wants me to call him Monday after I've had the weekend to soul search, but after reading this forum, I am pretty convinced to do the bilateral and reconstruction.  What type of reconstruction did you ladies have and how are you all doing now?  Does mastectomies pretty much guarantee that you can't get breast cancer again?  That may be a stupid question, but I know nothing of this type of rare cancer.  I do know that I will refuse chemo because my mom died of a heart attach during chemo treatments.  I fully believe she would have survived longer had she not had the chemo.  Of course, this was 20+ years ago, so treatment has come a very long way.  She also had stage 4 breast cancer and really had no other options according to her oncologist and surgeon.

Thanks for your input!  I am supposed to give my surgeon an answer Monday and he said he would refer me to a plastic surgeon.

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Mar 30, 2014 11:01AM VeganNicole wrote:

Hi jogyger818! I'm so sorry that you've been having to deal with this...It sucks, doesn't it?!? On March 12, 2013 I had a bilateral mastectomy and reconstruction with implants. They put tissue expanders at the time of the mastectomy and then starting on April 25 I went through 8 rounds of chemo - 4 of adriamycin and cytoxin and 4 of taxol. It was one round of chemo every 2 weeks and I finished my last treatment on August 1.

My oncologist (Dr. Neelima Denduluri of Virginia Cancer Specialists) had dealt with a couple patients who had had invasive secretory carcinoma (ISC) in the past and for my case she consulted with other oncologists around the world to make sure my course of treatment was the ideal path. My breast surgeon (Dr. Stephanie Akbari of Virginia Hospital Center) and my oncologist consulted on my case, too. Dr. Akbari requested a pathology report of my tumor from the biopsy they'd done. Here are the notes I took from our meeting about ISC:

- doesn't play by the rules: under a microscope it looks bad, but the prognosis based on other cases is good

- not interested in lymph nodes; just sits there

- very rare; fewer than 100 women per year are diagnosed with it; women in their 20s are the ones who usually get it 

- if I had a lumpectomy they would recommend radiation; if I did a mastectomy no radiation would be necessary (as long as the lymph nodes tested negative)

- they would check my lymph nodes by doing a sentinel node biopsy - just taking a few key lymph nodes to see if the cancer had reached those yet

- after surgery they would do a full pathology report on the tumor and then my oncologist could determine the best course of treatment (chemo?)

 - secretory carcinoma is always triple negative, but don't read stuff online about triple negative cancers because ISC is different...but they still recommend chemo because triple negative cancers are aggressive because they have no receptors (so chemo pills like tamoxifen wouldn't work)

- they will send away for molecular profiling ("mammoprint") which will take 10-14 days and will give us more information about the triple negative (by the way - this ended up not being covered by my Aetna insurance and the company that performed it - Agendia - sent me a letter to settle the account for $500 which I ended up paying)

- I have (had!) dense breast tissue so mammograms didn't show things very well, so I would have to get an MRI to be able to see much more (98%)

- I should get tested for BRCA1 & BRCA2 because my aunt had breast cancer in her 40's (the common ductal kind), even though she also tested negative for BRCA (I ended up testing negative for it, too) because there's a higher incidence of BRCA positive genes in triple negative cancers

- It's better to err on the side of caution because this cancer is so rare. Because of my age (a few weeks shy of my 33rd birthday at diagnosis) having chemo would give me the best shot at making sure we kick this cancer in the butt and I can go on to live a long life.

- Kind of surgery I would choose would be based on the size of the tumor, the location, and how big my breasts are - doesn't matter what kind of cancer I have. 

Since my tumor was behind my nipple and I have small breasts, I went for the mastectomy because there would be nothing left if they just did a lumpectomy. And I decided to do a bilateral mastectomy because I didn't want to have to worry about the cancer coming back on the other side. Plus, it would make any future follow up tests a little easier because if I still had my original breast on one side, I'd have to do a mammogram on that side and an MRI on the other... And this would also allow me to more easily make sure both breasts were as close to the same size as possible.

There are other options for reconstruction (using muscle from other parts of your body) but I didn't qualify for any of those options since I'm thin. The tissue expanders felt weird - they're like implants but with a firm back to them - not soft all the way around like implants. The final (silicone) implants feel more firm than I'd like. I got a bigger size than I was before and I'm still trying to get used to that. Laying on my stomach in yoga practice feels uncomfortable because I've got two silicone packages inside my chest. But from the outside they look good...The implants are tear-drop shaped so they're more natural looking than circular implants, and my plastic surgeon did some fat grafting to smooth out the area around the implants. (He said he would take the fat from wherever I wanted; I have a little bit of fat over my abs so I asked to take it from there. My abs were way more sore than my chest after that surgery!)

If you have the bilateral mastectomy, talk to your plastic surgeon about placing the drains on the side of your breasts where the scars can be hidden when you're wearing a bra or bikini top. Some surgeons put them lower on the torso where it's impossible to hide them. My plastic surgeon was great (Dr. Steven Davison of Davinci Plastic Surgery in DC). 

There are no guarantees that the cancer won't ever come back, but with a bilateral mastectomy the chances are something like 1%. A friend of mine had a bilateral mastectomy after having had lumpectomies (she's BRCA positive, I think she had the ductal kind of breast cancer) and her cancer ended up coming back -- but that's super rare. She then had chemo and radiation and just finished all of that this month.

I know how overwhelming it is to make all of these decisions. In my case, I chose to follow my doctor's recommendations to treat it as aggressively as possible because I have so much more that I want to do in my life. I've fully recovered now except for needing nipple reconstruction on the one breast where the tumor was. My hair is growing back, I've got tons of energy, and while I'm always worried that the cancer will come back, that just drives me to live life to its fullest now. Good luck making the choices that work best for you! Big hugs!

Invasive secretory carcinoma Dx 1/31/2013, 2cm, Stage II, Grade 2, ER-/PR-, HER2- Surgery 3/12/2013 Lymph node removal: Right; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
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Nov 17, 2014 12:30PM Mbh55 wrote:

Hi. I am new to this forum, and have recently been diagnosed with invasive secretory breast cancer I realize it's been almost a year since the last post. There is still so much confusion over the treatment for this type of cancer. If any of you can let me know how you're doing, I'd really appreciate it. I am 55 years old. I got my diagnosis after a biopsy on September 25th. I've met with a surgeon, oncologist, and plastic surgeon. I've decided on a nipple sparing mastectomy, mostly because my tumor is rather large, and I have small size b breasts. My surgery is scheduled for dec 1st. It's already been almost two months since my diagnosis. I'm getting very anxious about the amount of time it's taken to get started on treatment. If there's anyone else out there who knows anything about this type of cancer, please post. Vegannicole, your posts have been very helpful.

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Nov 19, 2014 07:47PM VeganNicole wrote:

Hi Mbh55 - I'm so sorry that you are having to go through this! I'm doing very well now. My follow up care is just that I have to keep an eye on how I'm feeling and report any sudden unexplained changes in shortness of breath, pain, etc. which thankfully there has been none of. The oncologist also recommends limiting my alcohol intake to no more than 5 glasses of wine per week (easier said than done for me). I feel great though! I finally decided to have my nipple reconstruction surgery last month where the doctor took part of the existing nipple and used it on the side with no nipple, and then cut into my skin and replaced it with Aloderm as a skin graft to make it look like a real areola (especially after they tattoo some color onto it in 4-6 months). It's still healing so it's hard to say whether I'll like the result but my plastic surgeon is great so I have faith that he knows what he's doing!

I was told that the cancer is slow-growing even though it's triple negative which is usually considered aggressive. I had chemo because I'm young and wanted to have the best chance at making sure it never comes back. I hope that if you talk to your doctors about your concerns about the delay in treatment that they can help to set your mind at ease a little. Best wishes for a safe surgery, quick recovery, supportive and loving family and friends, and a successful treatment regimen! Please keep us updated on your progress as well!

Invasive secretory carcinoma Dx 1/31/2013, 2cm, Stage II, Grade 2, ER-/PR-, HER2- Surgery 3/12/2013 Lymph node removal: Right; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
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Dec 8, 2014 05:27PM Mbh55 wrote:

My surgery was December 1st. Since my tumor was rather large, and my breasts small, I decided on a nipple sparing mastectomy, followed by a tissue expander. I am 1 week post surgery now, and am doing okay. I tried to switch from Vicodin to alleve, but found it may have been a bit too soon. My main complaint is pain near my armpit that tends to throb at times. I figure I'd better stay on the Vicodin for a while longer. I got a call from my surgeon saying that the node biopsy was negative. We're still waiting on the results from the pathology on thetumor. I have an appt next week with the oncologist to get those results.

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Jun 3, 2015 12:59AM - edited Jun 3, 2015 12:59AM by NATSGSG

Hello ladies:

Hope this message finds everyone recovering well....I tried to find articles of your disease for you, and only managed to find one that discusses rare breast cancer diseases that include Secretory Carcinoma, among others. Hope you'll find it informative and helpful.

In the interim, please consider visiting the Society for Immunotherapy of Cancer (SITC)site  to see if there's anything in the works using immunotherapy to treat your type of  disease. It is a current hot cancer treatment topic. Or, you may wish to have them include you in their mailing list should there are any new development? Here's their link:

Take care, and have a fantastic day everyday, wherever you may be @@!!!@@


This VIDEO link talks about the use of immunotherapy in cancer treatment (current hot cancer treatment topic) and fascinating to watch. 

NATSGSG Dx 3/16/2015, IDC, Right, 2cm, Stage IIA, Grade 3, 0/1 nodes, ER-/PR-, HER2+ (IHC) Radiation Therapy 8/12/2015 Whole-breast: Breast Surgery Lumpectomy: Right; Lymph node removal: Right
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May 18, 2016 05:23PM reniebeanie wrote:


My 50 yo mom had clear and bloody discharge from her left breast, and went in for a mammogram, then a 3D ultrasound, but nothing was seen until she had an MRI. They saw 3 2cm masses, and performed a biopsy that came back with secretory-like findings. Originally, her doctor said it was stage 1, grade 2 and triple neg. He said she had a very good outlook and wouldn't need chemo or radiation, only a lumpectomy. Then he came back and said she would need chemo, and came back again 2 weeks later saying she wouldn't. She just had a double mastectomy 2 days ago. After the surgery, her surgeon came out and said they got all of the cancer and that her outlook with secretory was good. The pathology report just came back today saying that she had 2 tumors in the left breast. One was 0.6 cm and the other was 6 cm. The report says the pathologist found DCIS, cribriform and micro papillary, and secretory types. It also says she is stage 3, and her doctor says she will need radiation or chemo. What I don't understand is how 5 months ago there was nothing on a mammogram, she only had 2 cm masses, was stage 1, and wasn't going to need chemo. Now she has a 6 cm mass, is stage 3 and probably needs chemo. How could they have missed a 6 cm mass? How did it take her doctors 5 months to figure out what was wrong with her? I feel like they have no idea what they are doing, and I need to find her a doctor that has treated invasive secretory carcinoma before. I'll take her anywhere. I don't care if we have to travel to the other side of the country. Any suggestions?

3/31/2016: Invasive Secretory Carcinoma-6cm, Stage 3; Grade 2; TN
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May 18, 2016 05:46PM VeganNicole wrote:

I'm sorry that your mom's going through this! And how frustrating that the doctors don't seem to have their act together. My breast surgeon was Dr Stephanie Akbari and my oncologist was Dr Neelima Denduluri, both at VA Hospital Center in Arlington VA. It's a great hospital. I wish your mom a smooth recovery

Invasive secretory carcinoma Dx 1/31/2013, 2cm, Stage II, Grade 2, ER-/PR-, HER2- Surgery 3/12/2013 Lymph node removal: Right; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
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Feb 13, 2017 07:40PM reniebeanie wrote:


I'm back again. I haven't posted in a while because of all the complications following my mom's surgery. Two weeks after her bilateral mastectomy in May, she went back into the hospital for a blood clot in her lung. Her doctor put her on xarelto to thin the clot, but it only stopped her wounds from healing and sent her back into the hospital a couple weeks later for emergency surgery. She had a massive infection and had to have the expanders removed and part of her rib because the infection had worked its way into the bone.

Following this, she has had so much swelling in her left breast (the one that had the tumors) and it almost looks like she is regrowing another small breast on that side despite not having any implants, expanders or anything. It causes her a lot of pain and the physical therapist has said that there is nothing more she can do. My mom was sent to her plastic surgeon to see if he could drain anything from that breast to relieve some discomfort, but he says there really isn't any fluid to drain. Now she is more concerned because the lymph node near her clavicle bone on that left side is very swollen.

She has gone back into the doctor several times and has even gotten a few more opinions. She has had another MRI and another ultrasound since. Both radiologists say the mass growing on that side of her chest is actually breast tissue and the breast is showing signs of changes since her mastectomy in May. She also has some suspicious nodules that they found in her lung and has had a persistent cough. The doctor really doesn't want to biopsy the new tissue in her breast or the lymph node, but I think he should.

She has also never been able to do the radiation she needed (as her tumor size was greater than 5 cm) because of all the swelling in her left breast. Now she will not be able to have it at all because it has been pushed so far out from her original surgery date. I am just so lost and have no idea what to do, where to take her, or how to help her. None of this makes any sense. This cancer is just so rare, and I've tried to do a lot of research on it, but there really isn't a whole lot in the literature. If anyone knows something or has any ideas, please let me know. I'm so desperate.

Thank you all and best wishes!

3/31/2016: Invasive Secretory Carcinoma-6cm, Stage 3; Grade 2; TN
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May 6, 2017 05:34PM somuchcancer wrote:


I was diagnosed at 11, in 1991, with Juvenile Secretory Carcinoma. I had 23 years of freedom, and was diagnosed with recurrence in Sept/Oct 2014 at Stage IV.

Since I have been with NorCal Kaiser for my whole life, they had my original tumor block and DNA tested it against the tissue from my needle biopsy. It was a recurrence of the same cancer, but was all over my lungs, and in several of the lymph nodes in my neck and chest.

Since August 2016, I have been on ENTRECTINIB (clinical trial 2). The week or so before I was allowed onto the trial, my oncologist had said it was "time to talk hospice". As of January 2017, I have gone back to work, and my quality of life has improved drastically. Because of the DNA fusion that my tumor has, entrectinib was supposed to be our best bet, and it has been. This stuff is 100% easier to take than chemo.

I want to make sure that there is follow up care for everyone diagnosed with this extremely rare cancer, and that they have access to every means necessary to stay alive.

Please message me if you have questions. Life is good.


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May 6, 2017 07:33PM Moderators wrote:

Dear sash,

Welcome to BCO and thank you so much for sharing your incredible story with our community. We are happy that your quality of life has improved and that you are back to work. We will continue to send you warm and healing wishes. Keep us posted on how things go and let us know if you need any help navigating around here. The Mods

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Sep 9, 2018 11:14AM - edited Sep 9, 2018 11:15AM by sharongrn

Hi VeganNicole,

Your post has confirmed all that I have been feeling. Thank you so much for writing such a detailed outline of your diagnoses and treatment plan. I found a lump in Jan 2018 and in April 2018 was told that I was atypical benign. I opted to have a preventive double mastectomy and reconstruction. After the surgery I was told that they found cancer and I needed to see a medical oncologist. I was then diagnosed with secretory carcinoma. They said it was good that I followed my gut. Really???? Now I am running up against doctors who have no idea about this form of cancer and they are telling me I am fine and need no other treatment. I am 51 years old in great health and look around 30 but that has nothing to do with the fact that I have/ had cancer. No lymph nodes were tested, no PET scan, nothing!!! I am so stressed.

Based on my research while this is a juvenile cancer when an adult has it, it can be more aggressive and come back. I am literally trying to find an oncologist who might not know this form of cancer but is at least willing to do research and help me. I do not want to be monitored and then 6 months later I am told something greatly different.

Again thank you for your message. I now feel and have a sense of hope.

Sharon Green
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Sep 9, 2018 01:33PM Moderators wrote:

HI Sharongrn, 

Welcome to the community forums!

Just wanted to let you know that this thread (and the original poster) have not been active since 2016, so unfortunately you may not get any responses here. 

However, you are very welcome to start your own thread on this topic here on this forum which will hopefully spark some discussion. 

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Sep 10, 2018 08:25AM sharongrn wrote:

Thank you! I will start my own thread.

Sharon Green

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