Hi anybody out there dx with peritoneal mets. I was originally dx 2005 wirh primary, again in 2010 another primary, bone mets 2012. I have staryed relatively well, various treatments, usual chemo, tamoxifen, letrezole now on Everolimus / Examestane combo. Found peritoneal mets on US in Jan after TMs started rising, I have read this is a common site for secondaries in cases of lobular breast cancer. Last week I had to have fluid drained and I’m really keen to know others experiences. Kris
Bumping this up for you Kris so others can see it
Best wishes
Lucy
Bumping this up for you Kris.
Take care
Valia
I do hope that you receive more info regarding this. I was diagnosed with lobular cancer Nov 2012 and within 4 weeks was told I had bone mets (upper spline and scull)…and also shadows in the peritoneal area which are ‘probably’ cancer…the Onc told me that I should accept that they are cancer…I am having Letrozole, Zometa and a Vit D/calcium supplement. Been on Letrozole for almost 6 months…I am told that there has been a huge drop in my ‘tumour markers’ … Have just been referred for anther CT scan so am waiting to see what these so called ‘shadows’ have been doing in the meantime.
like you I can ’ t. Find. Much info regarding the peritoneal area.
Hi Lynn, thanks for your reply. My scan results too have been on the vague side. One doctor told me in cases of lobular cancer, peritoneal secondaries can ‘seed’ in the peritoneal cavity rather than in organs such as liver and can form bands of tissue which can irritate. Sounds like letrezole is working for you though, brilliant. I am counting on my EE combo. which is fairly new. Kris x
That’s interesting… I was thinking/hoping that because my organs seem to be unaffected it is good news.
My Onc is a bit vague, he tends to gloss over things. There is a lot of cancer in the women in my maternal side and when I asked if my daughter should speak to anyone he just said not to bother…just tell her to be breast aware…she is 40, and her and her husband have just adopted a little girl. She took herself off to see her GP - who had referred her for genetic investigations…she only told me when they needed my consent to access my records. I am pleased that she had taken it into her own hands.
it is almost six months since I started Letrozoe so I asked for another scan …he didn’t offer one…then he only talked about how the scan could show a difference in my bones (for better or worse) I had to remind him about the peritoneal shadows.
He also said that my blood tests since the initial ‘huge drop’ had remained steady, but I haven 't had any further blood tests for that…only pre Zometa ones…I wonder if he is actually looking at my records!!!
My husband just says that I should leave it to him since he is the expert, but I may start askiing around a bit.
sorry i have gone on about that a bit…perhaps I should have started another thread…
Hi Lynn, its difficult to get a balance with this disease and live your life sometime s isn’t it. I have found the mental struggle so much harder than the physical at times, and that has been tough. However what works for me is to try and get a balance ie not thinking too much about things between appointments. But then basing my questions and requests when I do go on how i’ve been feeling. There is nothing wrong with asking for regular 3-6 monthly scans and monthly tumour markers, then if things start to change new treatments can be inintiated quickly, and there are some very hopeful new treatments. I guess your husband is trying to ease the pressure for you and encourage you to go with the oncs. methods. But in my experience they do need a nudge sometimes and staying well informed gives me confidence to challenge sometimes. Check out some of Lemongroves posts if you can she is very proactive and informative. Take care, stay well. Love Kris x
Hi Kris,
Spotted you on this thread and have sent you a PM. Hope you okay. Take care. Love Sheila xx
Thank you Kris for yoUr replyq. I do agree with everything you say…yes the mental challenges are sometimes the worst. I think that I will try to be a little bit more informed and ask more questions, I am sure that it will make me feel better, for the reasons that you have stated.
i know that my husband only wants the best for me…he knows that I am a worrier…Anne he says that he only worries about me worrying!!!
Lynn, the lovely Sheila, who also posts on here sent me some info which I am going to try and copy and paste, for you.
Anyway, I have found some positive stories but some are from 2011 and some from 2012. First one is lobular but not sure about others.
Lady was dx with mets to peritoneal lining 2006. Took Femara and armidrex until 2009. then had some spread so has been on chemo since but doing well. “working some and playing more” This was posted in 2011 but thread is closed now. Another found mets here in 2008. Had great success with xeloda and even got to NED for 7 months. Then went back on xeloda for for another 7 months. Now on Halaven which is working and manageable. Has even been camping for 6 weeks while taking it,
Another post March 2012 had spread to this area in 2006 and is still doing well!
Hope this makes you feel a bit better Kris. There must be some more recent posts but only looked at these. Will keep looking though.
Keep your chin up. I always think when I read older posts that if these ladies are doing well on these treatments, there are now even better ones. (hopefully, Evorilmus!)
Take care. Love Sheila xx
Kris
Thanks for this Kris (and Sheila)…good to be reassured…I hope that you stay well - I’d be interested to hear how you get on. Stay well
i am so glad to read this as I was diagnosed with peritoneal and bone mets in January 2012 (after primary lobular in left breast in 2008)
I had a duodenum bypass in Feb 2012 and then it all stayed under control for just over a year on letrazole. I am now on Capecitabine ( Xeloda) and last week just had to have 2.9 litres of fluid drained (ascites) I am now terrified the fluid will keep coming back and there is so little information about peritoneal mets and ascites. How did you get on? i have never posted on here before
Hi squealygirl and welcome to the BCC forums
I am sure you will continue to receive lots of support and shared experiences here from your fellow users, you may also wish to call our helpliners for support, information and a listening ear on 0808 800 6000, lines are open 9-5 weekdays and 10-2 Saturdays so please feel free to call
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Take care
Lucy BCC