Metastasis from Breast to Peritoneal??anyone else?

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Hi..I have recently been diagnosed with stage IV breast cancer that metasized to my peritoneum.(originally in July 07 I had a bilateral mastectomy, diagnosed stage 3A invasive lobular cancer ) It is such a long story of how I was diagnosed with the peritoneal but I went from my regular onocologist who diagnosed it and said my treatment would be chemo 3X a mnth for the rest of my life to a second opinion at Dana Farber ( who knew my ono for years) to they agreed with his diagnosis but not the treatment and put me on Femara.  So I  went from  chem 3X mth lifetime to a hormone replacement pill.

Has anyone out there been diagnosed with peritoneal cancer that metasized from the breast?  I read that it is rare.  Also mine isnot a tumor but diffused cells in the peritoneum and did not show up on a PET scan...in fact my PET scan was beautiful with no indication of any cancer.  In fact what did show up was a small bowel obstruction and gallstones which is what I thought was wrong with me in the first place (constipation and extreme pain in  my upper right abdomen) but they say it is Peritoneal cancer. 

Any insight from anyone would be wonderful.

Comments

  • nash
    nash Member Posts: 2,600
    edited January 2010

    Sorry to hear about your mets diagnosis. Although peritoneal mets are rare, they are not unusual for ILC, which likes to spread to unusual areas.

    Trying HT before chemo is a totally resonable course of action, and probably the one I would chose if I were in your shoes. ILC is almost always ER/PR+, and it makes sense to see if you can get a good response from HT before moving on to chemo. Remember, it's not that chemo is better than HT--they just work differently. Femara is not hormone replacement--it's an aromatase inhibitor that blocks estrogen production.

    It's a little disconcerting that your PET was clear, yet you have mets, but I've heard that from a lot of Stage IV ILC gals.  ILC is sneaky both when it's the primary tumor and when it's mets. 

  • flash
    flash Member Posts: 1,685
    edited January 2010

    you might also consider speaking to a geneticist and being tested for lynch syndrome.  Lynch syndrome is particularly abdominal cancers  and might be a concern for information if you have kids.

  • smart23
    smart23 Member Posts: 17
    edited January 2010

    Thank you so much for the response..Your short consise response is the most I have gotten from this  whole experience in the last 2 months.  It seems my ono still thinks that as he puts it "you will end up in chemo"  while what you have said about the Femara (dana farber recommended) it has to be doing that of blocking the estrogen and that is what I am taking and believe it must be doing.  I have not had ANY symtoms of the peritoneal cancer.  I DO have to make sure that I never get contiskpated and have kept that under control that I go daily. 

    It is so difficult having the different opinions of doctors and trying to put your trust in them.  I  have had such a tough time in this latest diagnosis with very little support from my doctors at James and Dana Farber.  I had my local radiation oncologist order the PET scan because my onocologist at James does not believe in them (too many false positives)  So ...it was like you that it was disconcerning that nothing showed in the pet scan.  OH Well ..I will continue on the Femara and hope for the best.

    Thank you so much for your help in this matter

  • nash
    nash Member Posts: 2,600
    edited January 2010

    You're welcome--I'm glad if I could help. Keep us posted on how you're doing.

  • AnneW
    AnneW Member Posts: 4,050
    edited January 2010

    smart,

    My mom had peritoneal tumors pop up like mad when she was dying of colon cancer. She'd had breast cancer 20 years prior, stage IIIB at time of diagnosis. I now presume it was ILC, though I never got her path report. Her colon cancer was a new primary, totally unrelated to the bc as far as we know.

    I'm sorry to hear of the difficulties you are going through. I hope your treatment knocks the beast away. And I hope you can get someone to trust.

    Anne

  • Soccermom4force
    Soccermom4force Member Posts: 631
    edited January 2010

    Smart23,

       have your Doctors brought up genetic testing ? PPC is one of the cancers that women who have a mutation in either the BRCA 1 or 2 genes are at risk for. The recommended "treatment" is removal of the ovaries (mutation carriers are at high risk for Ovarian cancer)  and bilateral mastectomies. Even after these sugeries are done there remains a residual risk of PPC (which is treated as Ovarian) in the 5% range.

       Dr Judy Garber at Dana Farber is the Head of the Cancer Genetics program there and an expert in this field.

      For more info on  BRCA & testing please log onto .....http://www.facingourrisk.org/

        You are correct it is very rare to have PPC and from metastatic ILC, even rarer.

       My very best wishes for your treatment to be easy on you! I'll check back on this thread to see how you are or you can PM me if you like,

  • Fidelia
    Fidelia Member Posts: 397
    edited January 2010

    The thing to remember here is that AnneW's mom had colon cancer as well as that much earlier BC - let's hope she was properly diagnosed and treated for metastatic colon cancer and that they didn't miss metastatic BC!!! Femara and other aromatase inhibitors are relatively 'new' and they work extremely well for women with ER+/PR+ Her2 - (or +) who respond. Smart23 if you have been on Femara for 2 years and have no symptoms - you are responding and that is terrific - that response can last a long time and as one of the ladies here - LuAnnH has reported - once the response starts to weaken it can be extended by adding Faslodex - so the concept of inevitable chemo is not necessarily so - some of us have been on hormonals for over 8 years and still no chemo - the good news is you are still on this treatment for at least 2 years :)

    There is at least another poster who has mets to the peritoneum and she has posted great results on hormonal therapy - doctors can be very confusing sometimes you get better information and definitely better support right here :)

    Fidelia

  • smart23
    smart23 Member Posts: 17
    edited January 2010

    Thank you all for the information and suggestions.  Yesterday was the first time I have ever been on this website and wish I had done it three years ago when all this started.  I did two other concerns that I have on other threads in this website and now I am overwhelmed with the great responses this gives.  Hopefully I now will be able to give suggestions to others in need.

    Soccermom...I will be seeing my ono in a couple of weeks and will bring up the BRCA..I had thought that since I had the bilateral mastectomy that it was not needed but now that they have diagnosed me with the peritoneal cancer I should reconsider it.

    Fidelia..Thank you for the info about Faslodex..if you run across the name of the poster with peritoneum that is using hormonal therapy I would really appreciate it.

    AnneW..sorry about your mom ..thank you for the support

  • Soccermom4force
    Soccermom4force Member Posts: 631
    edited January 2010

    Smart,

       The reason to test now would be that if you are + for a BRCA mutation you might be eligible for treatment using a new targeted therapy known as a "PARP" inhibitor. I believe it is similar to herceptin in that it targets only what it needs to.

    Please keep us posted,

    Warmly,Marcia

  • 123Donna
    123Donna Member Posts: 49
    edited November 2010

    My friend was dx Stage 0 Triple Negative Breast Cancer 2 1/2 years ago.  She had a bi-mx and was doing fine.  A PET scan earlier this summer indicated several spots on the liver and abdomen.  She was dx with Peritonneal Cancer, highly estrogen positive.  The doctors have not given any indication the bc had anything to to with the PC.  She's been responding well to chemo for pc.

  • 30DEBBIE
    30DEBBIE Member Posts: 105
    edited November 2011

    I had breast cancer 6 years ago - stage II mestatasis radical mastecomy  .Now I found by chance and was diagnosed  to the peritoneal. I was  origionally on Tamoxfin then Femara. I was taken off Femara when I was diagnosed in the Periotenal .We tryed fulvestrant  and my counts were fluctuatingand then I was progressing. I was able to figure it out myself  without knowing the #'s because I have a tram flap from my breast reconstruction and it gets uncomfortable for me... Now I am on to the   next.... I pray something will help me.  

  • Leah_S
    Leah_S Member Posts: 8,458
    edited November 2011

    Debbie, I'm sorry to hear about your new diagnosis.

    You might want to post a new topic asking any questions you have since sometimes people don't look in old topics that "reappear" in active topics.

    I don't know anything about peritoneal mets so I can't comment on that.

    All the best to you.

    Leah

  • doctorG
    doctorG Member Posts: 11
    edited October 2012

    My partner was diagnosed with peritoneal metastasis in July 2012. She is estrogen positive stage IV and already was living with bone mets (zometa monthly) and feeling good. Now, back to chemo weekly with Taxol and Avastin. After 12 treatments and with 6 more to go CT shows "stable." But there are so many lymphs in that area, we are scared it will spread again. Want her to be comfortable, but also keep searching for trials that may help. Anyone in trials with PARP inhibitors?

    Thanks and best wishes to all,

    DrG

  • sangeetasahni
    sangeetasahni Member Posts: 4
    edited January 2013

    hi,

    In my case i am just diagnosed and underwent mrm.( left breast was removed) in nov 16th 2012 later in PET scan after 7 days no cancer was found. but few oncs were doubtful about cysts in ovaries. so i underwent one more surgery on 8th Dec 2012 and now i am on chemo.., I too hve a peritonial deposit of 1 cm and have some pain sometimes but they are just puting me on chemo and dont discuss about it. I am waiting for next chemo and then take this issue up with oncs.

  • SissyAudrey
    SissyAudrey Member Posts: 2
    edited March 2016

    First diagnosis was at 44 years old. I am a 7 year survivor of ILC with liver mets 1.5 years after mastectomy followed by chemo. Had a liver resection and then chemo the second time. Had gone 5.5 years with clean scans. Noticed abdominal bloating out of normal and changes in bowels. Abdomen became distended and kind of lumpy. Assumed that I was just gaining weight and with all the scarring across abdomen, assumed that was why the lumpiness. Scans revealed "stranding" throughout abdomen in the peritoneal. I had just gotten clean scans 6 months before. Biopsy results showed that it was the breast cancer recurrence. Oddly enough, PET scans showed no issues! Never once throughout this entire cancer deal have my tumor markers been out of the normal range. I also have multiple lesions in my spine and in left hip. Have had 12 chemo treatments and decided that I needed a break for a couple months. Scans showed 2 new tumors, but many of the strands had holes in them, so chemo along with faslodex shots every 28 days are having some effect. I have had a lot of tumor pain during chemo and was told it meant the chemo was working. I have now been on my chemo break for 5 weeks and am having sharp pain on right side just below the reconstructed breast. Has anyone found any info on tumor pain in the peritoneal or any info on life expectancy on ILC mets to peritoneal? I have found very little info and knowing that info can help me to make good decisions about what I am willing to do at this point.

  • Dianarose
    Dianarose Member Posts: 2,407
    edited June 2016

    sissy I sent you a private m

  • ammco
    ammco Member Posts: 2
    edited November 2016

    Mine is retroperineal, not in the abdominal sack. The lymph nodes are swollen on the back wall and press on the blood vessels which causes pain,. that took me to dr.

  • harleyhoney
    harleyhoney Member Posts: 65
    edited January 2017

    I was diagnosed recently with recurrence of Breast cancer with mets to the peritoneal area. Difficult diagnosis to say the least. had total hysterectomy with gal bladder removed as well. All were found to be pretty full of cancer. Luck of the draw the breast cancer that reoccurred was a grade 1, so slow proliferating cells. Doc has me on just Femara right now, Tumor markers down significantly next scans in a few months will be the real test. I notice that postings here are few and far between. I hope those of you who had posted are well. Looking forward to getting to know you

  • KBeee
    KBeee Member Posts: 5,109
    edited January 2017

    I am so sorry that your cancer spread. I am glad to hear that you appear to be responding well to the hormonal therapy

  • Mirka80
    Mirka80 Member Posts: 9
    edited December 2017

    Hi I am from Czech republic (Europe) and take care of my mom who was diagnosed with breast cancer 13 years ago. Now she has been fighting with recurrence to peritoneal for 3 years. She is only on faslodex every 4 weeks and it worked well till this august when markers went up. I am searching for anything which could help her to stay stable. We can not rely on doctors as they give her only drugs which are cheap and paid by insurance companies. How pitty that on first place is not health of person but money. But we dont give up. I bought her canabis oil which works well. Also doctors confirm it. But what next? Some drugs are not available in my contry (Ibrance- costs a lot money)and chemo is not suitable for her. Do you have any experience how to treat it? Doctors expect life survive rate only 6 monts to 1 year. It is mirracle she is still with us. Any experince with the same issue or help? Thanks and wish a lot of energy to everybody.

  • Manza5683
    Manza5683 Member Posts: 5
    edited April 2018

    I have the same metastasis as your mom and I was wondering how the canabas oil helped and how you administer it

    Thanks

    Manza568

  • jojo68
    jojo68 Member Posts: 881
    edited May 2018

    Wanted to see how everyone is doing? I am having severe cramping in my pelvic area...when I sit I am fine but when I stand and walk it feels like I have a baby that is pressing on my bladder and uterus....also, to press on my abdomen hurts a bit. I have very little bloating but have early satiety. I have had an ovarian cyst and fibroids for years. I have an appointment next week to see what is going on but wanted to ask if anyone here had severe period-like cramping as well?

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