Cancer Support Thread #81 Newbies welcome

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This is a kind and friendly place for those with cancer or those worried they have cancer (or who used to have cancer) to hang out.
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Newbie here. It looks like I have a “metastatic malignancy of unclear origin -? GI ?gynae” with growths on the omentum. I’ve never even heard of the omentum which is apparently some dreadful huge piece of fat tripe that covers the whole of the front of the abdomen and keeps all the organs in place. It’s worryingly well served with lymph and blood vessels.
It doesn’t look brilliant but a CNS (whatever that is) will phone this week and a scan is booked for biopsy of ascites and mass.
It’s all quite shit; I’ve got two dc, 8 & 11.

Welcome MrsWooster and so sorry you have to join us here with such horrible news and young children. I have never heard of that body part either and am also learning a whole new vocabulary for stage 3 lobular breast cancer with possible adrenal mets. Do you have a treatment plan yet or are you in the what seems endless testing cycle like me? We will be here with you.

MrsPNut I wonder if it could be a second primary as well rather than mets as if it was same side in 2018 (and seems weird one side clear and one side tumour and swap sides between 2018 and 2021 and from what I can read they don't disappear by themselves but no expert) you would have thought I would have it more spread or dead by now with 3.5 years untreated stage 4 and its actually small for a cancer though large for benign. The doctor did change on learning that even if a different side, seemed to change from this could well be mets to its probably not mets. Though hopefully its neither. Looks like its best out though even benign but at least benign can wait.

I wish they could just get old scan and compared it to new one and I would not have to go in for another CT test. I don't like tests as each one seems to add to my list of problems, seems to be reducing chance they will solve it and delaying treatment. I did have a moan about this, I seemed to have moved from denial phase to moan phase, and that was the only thing that got through and he could see my pov.

Thanks, Silkies, it really is shit. I’ve been reading the thread and you’ve had a real run of it…
Everything’s been amazingly quick-GP to consultant to scan to CT in under a fortnight. Hopefully the biopsy will also come quickly-should be “within 2weeks” as everything seems to be.
Have to say I prefer the more usual MN version of the two week wait!

MrsWooster sorry to hear about your problems. CNS is Clinical Nurse Specialist I think. I had never heard of the omentum either. but happily living without it now !

Thanks, thereisonlyoneofme does that mean they can take out the whole omentum and we don’t sort of ‘cave in’..?! I can think of better ways of losing weight but I just want rid of everything.

Hi @MrsWooster
Another one here living without an omentum. A doctor told me that it's what they use for the outside of a haggis. So something more like a net than tripe.

What sort of a consultant did you see? Gynae? GI? Did they tell you how they knew it was cancer? I don't want to raise false hopes or undermine your confidence in your team, but I was told that I had 'suspicious cysts ' on my omentum as one of the reasons I was being transferred to a cancer centre at St Thomas'. This was after CT and MRI scans but before an u/s guided biopsy of free fluid.

My GP had referred me to the local general hospital Gynae consultant because I had a pregnant profile caused by a huge abdominal tumour No gynae oncologists on the MDT. I never heard about those suspicious cysts again and my St Thomas' surgeon's first words to me were 'well, I think it's benign'. I assume that's because there were no cancer cells in the biopsy. He described it as 'inconclusive' because with ovarian cancer it's the pathologist that has the last word and it wasn't till after surgery that I had a cast-iron diagnosis of a Borderline Ovarian Tumour. Not cancer. Cured by surgery.

Obviously my 'suspicious cysts' turned out to be harmless. And your consultant is sure enough to think yours aren't to give you a diagnosis. But, because of my experience, I just wondered if they had explained how they knew it was mets when they haven't even identified the primary.

Btw, nothing to worry about with the biopsy. Once they've done the local anaesthetic- with a kind nurse squeezing your hand and talking trivia- you don't feel a thing, just a clunking sound as they take the samples.

@MrsWooster yet another one living without an omentum, I have ovarian cancer. I too don't want to raise false hopes but on my CT scan prior to surgery, it showed ovarian tumours (which by then had been biopsied and were cancerous) and a 'large' epigastric lesion. This lesion was stuck to my omentum and went to pathology after my surgery and was benign, so wasn't a met. I'm also confused as to how your team think you have a met if the primary hasn't been diagnosed.

Please don't worry about the biopsy, it's completely painless and you hear a sound like a gas hob being lit a couple of times as they take the samples. The wound is tiny and they don't stitch or glue it, just put a dressing over it and the little scab drops off in a week or so.

Thanks, both of you. It’s encouraging to hear alternative options to complete catastrophe-I’m terrified and bemused by the whole process so I’ve no idea how they know it’s mets pré-biopsy. Maybe the sky high CA125 only happens if it’s mets but they said it was mets post ct scan but pre other tumour-markers-bloodtest.
I have to say the haggis image has put me right off -I was always quite the “chieftain o’ the pudding’ race” fan but not so much now!

Ps scan biopsy is booked for a week tomorrow.

Blimey: they’ve moved it to tomorrow. I have been extraordinarily lucky with getting immediate appointments. Which is frightening…

@MrsWooster
My ca 125 was 133. Another reason for transferring me. I think there's a tick-box index and I'd have scored high just for age and post-menopausal. TopDoc shrugged it off as caused by large tumour rubbing against other organs. I needed a transfer anyway, just to remove the tumour. It was squashing one of my lungs, but the Ob-gynae consultant was saying 'no surgery. It would be chemo.' I got 'a million apologies' for all this and she tried to blame the CNS who was just the messenger.

@MrsWooster

There's a lot of that going on at the moment. Others on here have been rung up at short notice because there's a slot to be filled. People drop off the waiting list because of positive Covid tests. Works to our advantage unless it's the doc who's tested positive.

Thanks. CA125 was 1057, which was what sent up the first flare, I think. I also have a pregnant looking belly but I’ll take any amount of chopping outs and /or chemo if it just gets rid.

@MrsWooster yes, you've got a cancellation. The consultant would have marked the referral as 'urgent' which means 2 weeks but if a cancellation comes up they ring down the list until someone accepts it. It is so much better to get it out of the way, I had to wait nearly 4 weeks for my biopsy after much chasing and begging on my part. Once you know what you're dealing with and how they plan to treat you, you'll feel so much better as it eliminates all the 'what ifs'.

I had the pregnant belly too and was so uncomfortable. I had mine drained at the same time as the biopsy of my ovary. Are you having a drain tomorrow too?

Hi Fizzy
I’ll certainly ask them to drain off as much as poss-it’ll be a physical relief at least.

That's good they have moved it to tomorrow MrsWooster hope it turns out not to be mets.

I phoned the breast unit today and spoke to a nurse and at least got some information though they said they could not get my old CT scan as its mine but they said to phone hospital had it done at and get them to send it to me or if they can't get consultants private secretary I had there. I said I had emailed consultant and she said consultants don't read e-mails much so that won't work. So e-mailed private hospital and they just phoned, they have it and will send my images on a disk and will e-mail report to GP. I said I have new GP as moved and they said took details and then have to get these to hospital. So great its tracked down but now its chase the GP time and ensure nothing gets lost. The GP also responded to frantic message I sent on Friday and said someone will call me on Wednesday. I just need the sizing and side mainly but main thing is it has been found.

The nurse was more hopeful than doctor and said the breast is all within the breast though lobular when do surgery is often worse and its large and in skin and she said in the CT what they are concerned about mets for is just the adrenal, they said as I had enlarged adrenal gland in 2018 (says other side) could still be mets but more likely benign or a slow growing second primary as they think its likely an error and same side.

They said if mets surgery will be cancelled, if need to do more tests after CT for adrenal (she said they are not adrenal experts so they don't know what they do next) they maybe could put me on endocrine therapy whilst I wait for adrenal to be sorted to keep breast stable, that would be much better, though I am peri menopause which hope won't be an issue with starting treatment. If 2 primaries she said could be either one first, MDT decide, again if adrenal first can do endocrine therapy, she said normally used for much older people than me but would work to keep stable whilst wait for breast surgery. She said they really need this next CT which is a closer look at area. She does not know why on report for first CT they put possible mets but would guess it was mainly as there's a mass and have breast cancer rather than appearance but she does not know. She said a second primary would be now much more likely than mets but hopefully its a condition I have which gives me these and its benign. I said the private doctor had said needed monitoring in 2018 and she said they should be able to sort that though looks like private monitor more than NHS but can go private for that if needed. But not a priority if is benign.

Does that sound tentatively good, Silkies? That adrenal benign tumours are something that you are just prone to, rather than being a by product of cancer..?

@MrsWooster they will probably drain the ascites as a matter of course and then just take a small sample to biopsy at the same time. I had 7.5 litres drained at the same time as my biopsy and the relief was immense! Good luck for tomorrow, I will be thinking of you Xx

Yes its better news they are saying the adrenal is now either mets, second primary or benign likely due to condition which needs treatment whereas at first were saying mets as if it was a much higher possibility and likely. Hopefully yours improves too but gosh this is terrifying, just beginning to feel better today. The benign was is obviously the best and they said if a second primary its likely to be slow growing, a second primary is better than mets for prognosis, they really don't know which it is at the moment hence second scan but they now think second primary or benign caused by an adrenal condition is more likely than mets. So yes its better news though its something when you are relieved by a second primary cancer possibility news. I would not be amazed if I have an adrenal condition as I get quite ill at times since 2018 and end up in hospital a few times, weird though was super healthy and very fit and active before then.

Biopsy all done-not the nicest thing that’s ever happened, but ok. They weren’t going to drain as there didn’t seem to be much fluid but I asked if they would so they did. Imagine their surprise when we managed almost 4 litres. I feel like I’ve been kicked in the gut but am at least able to bend in the middle again.

Glad you had biopsy done MrsWooster, shame they did not drain it at same time.

I was still awaiting ct date to see if adrenal mass is mets so phoned and they said we can do 23rd December, I said have you not got earlier then I got 16th December then I said have you got earlier and got Friday at 2pm. Then I phoned breast unit as I have to tell them when booked and they said may see doctor a couple of weeks after that to get results. I got upset at that wait and she suggested I see someone about my mental health, I said my mental health would be much better if I could start treatment and not let the cancer just grow in me with noone to discuss with so they are doing following Friday hopefully. I also had to get old ct by myself and will need to drive it there, it will be hard seeing that as will know if its cancer or not from whether it is same or different side and size. Though hopefully will be same side and similar size in 2018 or 1cm or so less then only the one cancer to deal with. Of course I had just before booked a dental appointment at same time I now have ct but the receptionist there was so kind, said she had breast cancer 5 years ago.

@MrsWooster I'm pleased you've had your biopsy and were drained, the relief is immense isn't it? I had the afterpains too and also was constipated for days after it. I've had 5 drains altogether and this happened each time!

I dropped back into lurking here but wanted to update you about my Mammogram results - the conclusion was nothing to worry about.

So that is headline. Detail is lots of things noted including asymetry of ??? (lost in translation), calcification and a benign tumor. This is the lump I could feel and having poked it a lot I've revised my assessment of it's shape from tubular to more oval. I also made the connection that it was only palpable when lying down. So that explains all the times I couldn't find it!

I will have a 'belt and braces' US but there was no urgency coming from the dr around getting that done.

I wanted to update to give an example of the stat that 90%? of breast lumps are not cancer. I hope that helps those here who are undergoing investigations and is not insensitive to others.

I'll probably continue to lurk around but won't go before thanking you for answering my questions and your good wishes. My good wishes to you all too.

@chuntersalot that's great news and thank you for updating us!

@Silkieschickens

Glad you had biopsy done MrsWooster, shame they did not drain it at same time.

I was still awaiting ct date to see if adrenal mass is mets so phoned and they said we can do 23rd December, I said have you not got earlier then I got 16th December then I said have you got earlier and got Friday at 2pm. Then I phoned breast unit as I have to tell them when booked and they said may see doctor a couple of weeks after that to get results. I got upset at that wait and she suggested I see someone about my mental health, I said my mental health would be much better if I could start treatment and not let the cancer just grow in me with noone to discuss with so they are doing following Friday hopefully. I also had to get old ct by myself and will need to drive it there, it will be hard seeing that as will know if its cancer or not from whether it is same or different side and size. Though hopefully will be same side and similar size in 2018 or 1cm or so less then only the one cancer to deal with. Of course I had just before booked a dental appointment at same time I now have ct but the receptionist there was so kind, said she had breast cancer 5 years ago.

Well done for being such a strong advocate for yourself. Sometimes you really have to fight your corner to get the results you need, especially in the NHS. When I was diagnosed with breast cancer a friend, who is a doctor, recommended I was 'politely pushy' about getting the quickest appointments/treatments possible. From my initial diagnosis at the very end of January 2020 to being post-surgery and cancer free took just under 6 weeks.