Hi
I have just been told that my mets have spread to the peritoneum and omentum and that this is causing swelling of my kidney (hydronephrosis). I have just started a course of FEC chemotherapy. I was initially diagnosed with widespread bone mets in April 2008 and although I was coping very well with this, I feel that I am struggling to come to terms with this new diagnosis and I am feeling quite bleak about the future. Part of my problem is the lack of information regarding this type of disease and I would be really grateful to hear of anyone else in a similar situation and what their experience has been?
ShelleyAnn
Sear ShelleyAnne,
First of all, I’m really sorry to hear you’ve had this diagnosis.
Basically, I was diagnosed in Aug 2007 with mets (plaques not big lumps) on peritoneum and retroperitoneum and round bowels with queries on adrenal glands and ovaries. I also had a met above one eye and extensive but diffuse mets in my spine, ribs and pelvis.
As I hadn’t had any therapies beforehand, so I was put on tamoxifen and zoladex. I had a fantastic response but in January this year, some peritoneal mets reappeared so I went on to femara. Will have chemo if hormonal therapies fail or if the mets are causing immediate probs to organs.
My quality of life is very good and on the whole I have very little discomfort. Despite having an apparently ‘normal’ life, I can’t avoid the fact that it still is a case of trying to dodge the bullet for as long as I can. But because we are a bit unusual, I wonder whether the usual stats apply to us so I keep hoping!
If you want to PM me, please do. Very best wishes for now
Anne xx
PS have gone back and cut this down a bit- too much info in it
Thanks for your reply Anne. I will keep in touch.
X
Hi ShelleyAnn,
I have omental infiltration (mental fil) and you are right it is so frustrating not to be able to find any information on it. I was diagnosed with bone and liver mets in May 2004, long story so I won’t bore you with it. Last Oct spread to omentum showed on scan along with more clusters in liver. I have just done 15 tax and scan on 1st April shows stranding in omentum is now thickening. Stranding is bad thickening is good apparently. I know how frightening it is when you can’t compare treatment etc so if I can help in any way just let me know.
Love Debsxxx
Thanks Debs
Have you had any pain associated with this? I have some pain which is sometimes like tummy pain and sometimes like a period pain. It is worse later in the day and I am now taking painkillers in order to get to sleep at night. I am keeping fingers crossed that the chemo is effective and that the pain recedes.
ShelleyAnn
X
Hi everyone
Can I join in this club? I too am struggling to fine information on this. As well as extensive desease in my neck and brachial plexus and small volume desease in the chest I have significant peritoneal desease.
The scan reports
“In the abdomen, there is small volume ascites around the liver and in the pelvis associated with significant thickening of the small bowel mesentery and the omentum. Although are no definately enlarged lymph nodes,the paraaortic area is abnormal with stranding and thickening suggesive of sheets of tumour”.
I am terrified, but onc is laid back as usual. Can anyone help with what this all means?
Thanks
Pat
Hi Pat
It sounds as if your situation is broadly similar to mine. Have you had lobular carcinoma as apparently this is much more common with lobular disease? What is your oncologist suggesting by way of treatment? Mine has recommended chemotherapy due to the kidney enlargement whereas previously I have been on hormone treatments. There are obviously a few of us around with these problems although it is far less common than lung and liver disease. I found some useful information on the BCmets website regarding this type of spread - you might like to look there? Some of the others who have had this problem for longer might be in a position to answer more of your questions.
ShelleyAnn
X
Hi Pat,
As I said above, mine is very similar. I’ve done really well on hormonal therapies (around 20 months now) and feel great but am a bit worried about my forthcoming scan again.
As I understand it, ascites either comes from liver problems, or in our case, irritation of the peritoneun (thanks to mets). This is similar to the ascites that women with ovarian cancer get. Our disease doesn’t necessarily show up as swollen nodes. It seems to like to spread more than it likes to grow and form lumps. The small bowel mesentary holds your bowel in place really and I’m not sure what the omentum does but it links up different bits and pieces.
Trouble is with our sort of spread is that you can’t really detect lumps, it seems to form ‘nodules’ or plaques. So CT etc can’t pick up masses but it can pick up ‘changes’ that are consistent with these plaques growing in otherwise healthy tissue.
Having had around three radiologists report on me at different times, I’m learning that they vary so much in what they say! Some are more scary than others and the phrase ‘sheets of tumour’ is not particulary helpful. Like you, I had ascites and it returned on last scan but am hoping that my therapy switch has contained it again. My mesentary was also affected. On my report, they said large volume ascites but it isn’t particularly large at all and hasn’t been.
Let your oncologist guide you on this one. If he is laid back, trust him. What I’m learning about living with this is that a lot of how the oncologists treat you (i.e sending you for scans, changing therapy etc) is based on how you feel. I found this really hard to begin with but have got the hang of knowing if something feels different.
As there aren’t so many of us ladies, we should all keep an eye out for any info.
Anyway, take care
Anne xxx
PS I get most of my info from scientific literature- there is not a lot of it. Some pretty good though.
Debs
You’re post is inspiring. To hear that you’ve lived with mets 5 years ago and you are managing to control disease in your abdomen with chemo is wonderful. Also, to hear you sounding so strong about it. Thanks.
Anne x
Hi everyone, thank you so much for your helpful comments.
I had lobular breast cancer with loads of lymph node involvement in right breast (Her2 neg but PR+). I also had ductal in left breast (Her2+) but it is the Her2 neg cancer that has metasised to the lymph system and elsewehere. I had a course of docetaxol which finished at the beinning of this year but the cancer had already started to grow again and Femara couldn’t hold it so have started a course of Vinerabline. Haven’t seen much effect yet but am hoping it is still a bit soon. Difficult really because last time the docetaxol seemed to work straight away although it didn’t continue.
ShellyAnne, what symptons did you have with your kidneys?
I would be grateful if you could PM me any links for information as I have problems getting around the BCmets website or out finding much generally about our kind of less than usual take-up.
Hi Pat
Re the kidney problems the only symptom I have had is some discomfort in my abdominal region in the evening but this is more likely to be due to the cancer than to the problem with my kidney. I think from a kidney point of view I am asymptomatic but the oncologist has ordered weekly blood tests in order to keep an eye on my kidney function - so far all within normal limits despite the chemo!
When I get a minute I will try to find some references for you and PM them to you. Is it info re lobular CA or info re the abdominal spread which you are keen to get?
ShelleyAnn
X
Hi
As a follow on question to those of you diagnosed with peritoneal mets have any of you had a tissue biopsy of the peritoneum to assist treatment decision making? I have come across a couple of journal papers suggesting that is important to have such a biopsy in order to rule out other possible diagnosis such as ovarian mets to the peritoneum and primary peritoneal cancer? I am meeting with my oncologist tomorrow and when I first mentioned it to him he was not keen to refer for a biopsy, but having read these papers I am more keen to push for this. Anybody had any experience of such a procedure?
ShelleyAnn
X
Hi Pat
You mentioned that it was the Her2-ve (lobular) that had metastasised. Where was the biopsy taken from to confirm this?
I’m not much help here because my BC was diagnosed and biopsied during as exploratory operation on my tum.
I suspect that getting a peritoneal biopsy has quite a few risks associated with it e.g. puncturing organs/bowels or infection which really could get you into a far worse situation than you are in now. Also, as I understand it, peritoneal mets tends to be plaques/nodules or as you said, sheets, so it would be a bit hit and miss as to where they would be able to image and sample them properly. I think that’s right.
So, unfortunately, I think it’s a case of having to live with even more uncertainty.
As I have now had two abdominal ops, I think they’d be reluctant to open me up again unless it was essential. I often think, I should carry a list with me in case I need an emergency op sometime, so that I can say ‘While you’re in there, can you just take out my ovaries and other bits I no longer need, do a few more biopsies and tidy it all up a bit?’! Until then, I can only hope that my mets don’t change their receptor status too quickly, so that the therapies are still ok. xx
Thanks for getting back to me Anne. I suspect you are right about the biopsy but I might run it past the onc again just in case. They were just inferring from the fact that my third and most recent breast tumour pathology (April 2008 accompanied by bone mets only at that point) was ER+PR+Her2-ve and lobular - that all the mets would be too. I know that that is not necessarily the case and in particular that if there has been a mutation to Her2+ that Herceptin might be an option at some stage. The onc also said that lobular is less likely to be Her2+ which I had not heard before. I plan to do a separate posting to hear the views of others on that. Do you have any knowledge about that issue. Thanks again
Best wishes
ShelleyAnn