oh don’t get me started on the frustrations of tech. It’s all meant to be so easy and streamlined but in my experience it never is…
Hope your pre-op assessment went ok today. That’s great that you have a date now for your reversal. What a day of celebration it’ll be when you do your first poop!
I guess any kind of peritoneal mets can be classed as stranding. They’re clearly happy that all is quiet and stable in there or they certainly wouldn’t be going ahead with your op if there was any chance they’d need to reverse the reversal anytime soon!
im still struggling on this new chemo (Enhertu). I’ve just had my third infusion and it’s made me feel sooo dreadful. This time around they’ve given me a whole pharmacy to bring home so I’ve been taking everything to the max dose. It has been much better - almost no nausea until the last day or two (I think the premed has just worn off) but I’ve been very drowsy and dozey, so still not able to do too much.
All the best for your op, if we don’t speak again before then. Do let me know how you get on
Sorry I haven't replied before. I did start a reply on my tablet, but it disappeared, to my frustration. I am now using the laptop, which my husband has been hogging, because it has a proper keyboard and doesn't change what I've written. Well, I've finally got an appointment for my ileostomy reversal - 16th August, and I have my premed assessment tomorrow. Apparently it isn't a big operation, as I had a loop ileostomy so the small bowel wasn't completely separated and nothing was taken away. I think there are problems reversing if you have an end ileostomy where the small bowel is disconnected and the large bowel is removed.. There is supposed to be no blockage to either my small or large bowel, according to MRI scan carried out at the end of 2020, and recent CT scans. We shall see. I still worry because there is "stranding" in the peritoneum and that is what blocked my bowel in 2015. There has been no progression of anything in my peritoneum since, which I find quite remarkable. I also have multiple bone metastases, which also have been stable ever since. As my original BC was in 1995, I've concluded that it must be a very slow growing one - although that is just what I think. I've never actually been told there is no evidence of disease, as some have been but I think I have been very lucky, touch wood.
My denosumab has been suspended due to dental problems and I don't know if it will be recommenced after my oncology appointment is September.
Hope you are doing OK.
Im sorry I’ve only just seen your message.
well that’s amazing that you’ve been stable for so long with peritoneal mets! And I didn’t even know an ileostomy could be reversed!? The mind boggles….
Its a pain everything has been delayed by the ‘other’ C word, but you do sound a little bit unsure about the response of your bc if you went ahead, so perhaps it’s good to have a little more thinking time. I don’t know, sometimes thinking too much is overrated in our situation..
I haven’t found your other thread about denosumab, but it sounds as though it’s served you well over the past several years.
I hope you’re getting that sorted, whatever the problems have been.
Just thinking about surgery to reverse your ileostomy - I wonder whether they could remove any of the mets area while they’re in there? Can we manage without a bit of our peritoneum? I have no idea. But I completely understand your fears about waking up the beast when it’s been so quiet and stable for so long….
I hope you reach a decision that you can feel at peace about
Hello Jacksy and others,
I see that it is about three years since I wrote on this thread. For some reason I haven't really seen it when looking on the forum. Well, I am still stable after more than six years since my ileostomy and diagnosis of secondaries. (My original BC was in 1995). Several previous scan reports have not even mentioned my peritoneum, seemingly focusing on my bones, but my latest scan goes into a lot of detail about stranding, etc, etc. I looked into ileostomy reversal almost two years ago but appointments with the consultant were delayed by both lockdowns. The consultant I saw last November seemed to think it would be safe to perform this operation, but needless to say this was deferred by Covid. I am still waiting to hear from them. I must say I am a bit wary because there is still stranding so have not chased it up yet. I worry that an operation might "wake up" the BC and cause it to block my bowel again. I think I have been really lucky to have been stable for so long. I'm having problems over Denosumab which I will write about on the relevant thread.
Best wishes to everyone,
Hi Fiona and welcome to the thread,
I’m sorry to hear about your new mets in your omentum.
I’ll tell you a bit about my treatments:
I was diagnosed in 2007 with primary BC and a single liver met. Had FEC/taxol chemo and herceptin and tamoxifen. I had a liver resection in 2012 following further growth in my liver.
continued on herceptin until 2015 when my peritoneal mets were diagnosed. I’ve been on Kadcyla since then and had my last treatment on Wednesday as it’s started to fail - more growth in my peritoneal mets and a new lung tumour. I’m going to start on a new drug now called Enhertu. It’s still targeted at the HER2 proteins as all my treatments have been, as I’m HER2 positive. Treatment options will be different if you’re negative.
I hope you can be encouraged that I’ve had omental mets for six years and still going strong!
All the best with your new treatment, I hope it’s not too unpleasant and that it works well,
I've just found this chain and although it's a while since anyone posted on it, I hope you're all still around and doing well.
I was diagnosed in October 2019 with invasive lobular breast cancer with metastases to my bone marrow, bones and lymph nodes. My initial treatment was letrozole, abemaciclib and denosumab. However, after one cycle of abemaciclib it was clear I couldn't tolerate it and I remained on letrozole and denosumab alone until two weeks ago.
I found out last October that there was a new soft tissue mass in my omentum and in February I was told it has progressed and switched to a second line of treatment. I'm now on exemestane in place of the letrozole. I was hoping that I might be able to benefit from your experiences in terms of what drugs have worked and how you've managed symptoms.
With very best wishes to you all
im sorry to hear about your relative. It does sound as though the cancer has spread to her omentum. The tumours there don’t tend to be in round blobs, but spread through the omentum or peritoneum a bit like a picture of the Milky Way in space. Given that they have also found bone metastasis the assumption would be that what they are seeing on the CT scan is also metastases . Now that the cancer has spread from the breast it is considered to be incurable, and the assumption is that there will be other ‘seeds’ that have escaped around the body, which could start to grow into secondary tumours. That is why we tend to be given systemic treatments that travel throughout the body and target any cells they find. The good news is that there are lots of treatments available and people are living for many more years on treatments that control or stop them growing. so secondary cancer can be rather like a chronic illness, but strictly speaking it is not. I hope this answers your question, I can’t see it to re-read it, sorry!
it is encouraging to hear of others with spread to the omentum and peritoneum, it makes me feel less alone and unusual.
all the best to everyone, take care of yourselves
one of my relative is just diagonesed with MBC , originally it was discovered in 2005 ER+ pr - her-, grade II, now in 2018 she has been diagnosed as per ct scan + pet scan
1) bone mets
2) general haziness of omental & mesentric
Currently the medication is letrozole + ibrance + monthly injection
intially on songraphy mild ascites was deducted,
3) is general haziness is a definately indication the mets is in omental region or is it early stage
i can see you are having it since last 4 years, as on net it says the progonis is poor, currently what options we have and can it be change to chronic disease
It was so nice to receive your reply! I am new to this Forum (I am English but have lived in Australia for 30 years). Quite often on Forums you email and it's a long time between posts.
That sounds really good news that everything is stable. The involvement with my omentum, also, has been told to me as it's a rare area for the metastases to go. I have also been warned that a bowel obstruction can occur with virtually no notice and that an ileostomy can result. My first metastases was to the lung - that area - whilst it looks an abomination on scan - is supposedly "stable" for now. So the omentum is the latest area. The ribociclib was awful in the first few days but now I don't feel any different to before I started it. Like you, I think the met in the lung was there for a long time before it was picked up. After the second diagnosis of BC - not a metastases - it was a new cancer, different grade, but in the same breast as the first - I went 17 years with nothing. Had a lot of pain in the right ribs for about 10 months before the diagnosis of mets came - courtesy of my GP who had got rather laid back about my history ... Mine is also in the pleural cavity which complicates things. Xeloda (Capecitibaine) was brilliant for keeping it under control - only took it for 6 months but kept things stable for 2 years. Only recently has it stopped being effective, hence introduction of ribociclib. Look forward to staying in touch, Windflower! Cheers, Tanya
Hi TB and Porkie,
I haven't posted on here for some time, but I am still around and still doing fine. My last scan in May (12 months after the last one), showed that everything is still stable, cancer-wise. So I am still on Anastrozole and Denusomab for my "multiple bone mets" (which haven't got any worse. The last scans haven't mentioned my omentum or peritoneum at all, so I don't know if the mets have gone, although I can't see it, somehow, if they were bad enough to cause me to have an ileostomy (which I've still got). Apparently it is very rare to get secondaries in this area, especially if they haven't been found somewhere else first. I believe the mets were in my bones for quite some time before they were discovered and I don't get pain from them. They only came to light because of the mets in my peritoneum.
I sometimes feel very fortunate, compared with other people who have to try different medication all the time, but I assume that as my mets weren't discovered until twenty years after my primary (three and a half years ago) that my cancer is slow growing. I know this can change in the future though.
Best wishes to you both.
Windflower - it's a while since your last post - wondering how you are doing. I had 17 years free since second BC diagnosis. It came back in 2016 in the lung. This year in the omentum. Told no cure just try to stabilise. Had Xeloda for 6 months in 2016 and it produced good results. Tried again this year for the omentum and not doing anything. Now introduced Ribociclib with Letrozole in addition to Xeloda. Early days. Ribociclib has listed a lot of side-effects. It's been 4 days now - extreme tiredness and aching in the bones.
Hi Porkie, my history is first BC 1997, second BC 2002 - Metastatic 2016 (lung/few areas of bones) - treated with Xeloda - good results. A few months stabilised then recently 2018 identified as metastases in the omentum. Xeloda not producing good results this time so Tamoxifen changed to Letrozole and now taking Ribociclib - a new drug. Side effects not particularly pleasant. I am in Australia and everyone is surprised at a spread to the omentum - quite rare. My BC is oestrogen receptive but I understand the pathology morphs with BC and the omentum is associated with lobular BC. I'm just relieved to find someone who has this also in the omentum!! Idea of Ribociclib is to stabilise.
im sorry to hear your chemo break was so short lived and you have to start up again. I was diagnosed with peritoneal mets 18 months ago, not sure exactly where mine are but the Omentum is part of the peritoneum near the stomach, according to google. I think the peritoneum covers a large area and lines the abdominal cavity with folds in and out around the organs. They call it the 'apron of fat' - charming!
i also get the impression that rather than distinct tumours with a clear edge, it's more like threads and thickening within the stretchy tissue. It's hard to picture it isn't it? And to imagine which organs are nearby.
im on Kadcyla as I'm Her+ and had a good response to herceptin over 9 years (I know Im lucky I got started before NICE pulled the plug on it). It's chemo combined with herceptin. Been on it a year and it's keeping things stable.
i really hope your treatment is tolerable and does the trick, holding things in check for a good long time. Be gentle on yourselves ladies, our bodies are working hard in there, fighting back.
It is quite some time after the last post on this topic. 20 years after my initial breast cancer (with no indication of spread previously) I was taken ill and had to have an ileostomy due to metastatic breast cancer in my peritoneum (in the omentum). This was in March 2015. Shortly afterwards it was discovered I also had multiple bony metastasis, which must have been there for some time. I had chemotherapy (something with three initials starting with F) which had positive results. I am now on Anastrozole tablets. I also have denosumab injections every 4 weeks and am on Warfarin as I also had a pulmonary embolism at the time I was taken ill. I have not heard of anyone else having to have an ileostomy for this reason, nor have I seen anything else about breast cancer spread to the omentum until I came across this thread. I am currently awaiting the results of my latest CT scan, so have my fingers crossed. Previous CT scans have shown "no progressive disease" but I know this can change at any time. Like everyone else I was told that I cannot be cured but can be treated. Up to now I wouldn't know I had cancer in my bones as I don't get pain from it. I do worry that the cancer in my omentum could get worse. CT scan reports seem to only comment on "shadowing", "stranding", etc. The ileostomy stopped the pain and sickness I was having, but has brought its own problems. I just wondered if anyone else out there has had to have one because of cancer spread to the omentum, or just if anyone else has secondaries in this area.
Well been to oncologist today and given symptoms are not getting any better going to have to go chemo route again. So plan is to continue on herceptin and start vinorebine alongside it. I am told this is quite a well tolerated chemo so we will see. I just wondered whether anybody else has taken this drug and what the side effects were like. Many thanks xx
Thank you Su Bee - it is reassuring to learn there are others with similar mets, especially as you have had them for so long. I do hope that the carboplatin works well for you. I have mild acites at the moment so hoping they will stay this way, most of swelling is infiltration of the omentum I think which I am hoping will subside once a treatment starts to control it.x
I have peritoneal mets, had them for 6+ years, I now have a permenant drain in my abdomen to drain off the acites. I have had good response to hormones and FEC, now on carboplatin.
Hello ladies, I have just received the copy leter from my oncologist which states that the CT scan shows omental infiltration. I had never heard of this but it is part of the abdomen lining and is causing bloating and digestive issues. It is also really painful so feeling a bit sorry for myself. Apparently lobular cancer can cause omental infiltration. I just wondered if anybody else had experienced this type of spread? I started Tamoxifen mid Dec so have agreed to hold off until mid Feb to see if this will start to bring under control, if not then more chemo. Had docetaxol last March so was hoping for a little longer break but if it alleviates some of the symptoms I would gladly have it at the moment.xx