I'm being tested for cancer

[Justusemyname]

I have been told I'm not going through an early menopause but the GP sent me for a blood test to check for ovarian cancer and the letter has already gone to hospital for a scan to check for cervical cancer. I'm very calm. Wondering if I'm being denial, stupid, or best way as I've no idea what is going on yet. I'd like to talk to people about their emotional feelings rather than physical if anyone would like too.

Brilliant news, weebirdie! Savour the relief and enjoy your holiday. The most painful part for me was post-op trapped wind!

Justuse and Trilateral - I was so calm on the surface it was unreal. Totally fingers in my ears and 'la,la,la I can't hear you'. But my body was telling a different story, with the loss of appetite and adrenalin surges on waking.

My 'cyst' weighed more than 2 kilos and was taking up most of my abdomen. No pain, no bleeding - just a pregnant profile.

I googled 'cyst', but didn't get further than '95% of ovarian cysts are harmless'. That was good enough for me. I really didn't want to know. My poor daughter spent hours online and discounted what I turned out to have because it said 'younger women' and 'not serious'!

We're v close, but we had these ridiculously chirpy conversations on the phone, both of us pretending it was just routine, NICE guidelines at my age, to have a Cat and an MRI and a biopsy - nothing to worry about, really. We were both bending over backwards not to say anything that would upset the other one.

Meanwhile, she was planning my funeral and I was making a list of 'Reasons to be Cheerful...I have ovarian cancer'. (All that money we'd save on care home fees. Never having to cook another Xmas turkey.)

I did open up a bit more to 2 old friends, daily emails. Both too far away to meet up - one works at the big cancer hospital in NYC - it was he who packed me off to the GP for anxiety meds - and lots of black humour. Could I carry off a Chrissie Hynde wig at my age? Probably not.

My GP said to me 'It's v good that you're feeling so well' and I held on to that, all through the nasty bit in the middle, when someone at my local hospital actually told me on the phone, 'No surgery, just chemo'. (I kept quiet about that.) Until finally I saw my lovely Gynae-onc at the teaching hospital. The first thing he said was, 'Well, I think it's benign and will be operating in 13 days' time.' That is truly one of the highlights of my life, right up there with childbirth. I stood on Westminster bridge, traffic thundering past, Big Ben bonging in the background and rang my daughter.

It's different for me in that I don't have a partner and my dcs are grown up and I'm used to doing things by myself. Denial is my middle name. I only cry over sad films. To sum up, I got through by living in a bubble. And the box set of Breaking Bad. Two hours guaranteed oblivion every evening. I had a binge the day before surgery and saved the last episode for the day I came home from hospital.

We're all so different. Don't know if any of this rings a bell. Fingers crossed you'll end up with as happy a result as I did.

Thanks Thymeout

I told one friend by text who was very matter of fact. Good. Told another by letter who has texted about everything but. That's normal. Bit annoyed given she has medical issues a lot and I am always there for her, asking about things etc.

Triliteral I have to say I am a bit surprised your consultant said you should have your tonsils out because of the stones- for that you can have the surface lasered off: a quick outpatient procedure and much safer that tonsil removal in an adult. If as you say, the black spot has gone ( and did that stone went away as well?) than just because you had melanoma nearby doesn't seem a good enough reason to make you undergo an extremely unpleasant and a bit risky surgery? Unless obv there were other symptoms that made him make that decision? And presumably if he thought there was a good chance of reoccurence he would have you operated on in a matter of a few weeks not months?
Hand holding to everyone on this thread, waiting for tests and results sucks big time. I had cervical cancer over a year ago and it wasn't much fun, although I was lucky in that there were just 2 1/2 weeks between diagnosis and surgery so not that much waiting to do.

Yes, Justuse. Who to tell? And reactions to the news.

I knew from the beginning it was going to take a long time to get any answers, so I had to tell people who I'd normally see over the intervening time. Played it down and left it up to them whether they wanted to know more. Some kept in touch, others went v quiet - and not the ones I'd have expected.

A friend who I've known for years, but only see about 3 times a year, made a note in her diary to ring me every week. She was brilliant. It's not easy to phone someone when you know they might have had bad news. But I was a bit disappointed by others, even a relative. But there you go...

How are you feeling now?

Handholding - I was referred yesterday and given three options for what it could be, so am a step behind you early menopause is not ruled out yet. Am here if you want to talk , I am not talking bout it in RL till I know more .

I'm not sure how I feel. I'm having trouble with my eyes and crap service from the opticians and it just feels like everything is a battle. My friend texted I knew she was there for me but I feel like saying I don't actually. She says she never knows if it is okay to ask about difficult things I'm going through but by staying silent it makes me feel she doesn't care. She's quite demanding but would be heart broken to know I felt that. I wouldn't care if I felt I got a little back of what I give.

winnybella, i too am slightly confused over the way it has been dealt with. The black fleck has indeed disappeared, however i wasn't sure whether it has actually gone or whether if my tonsil had been temporarily enlarged and it had gone back down into the crypt, hence the reason i personally would be relieved to have the whole thing removed.

The ENT mentioned the laser treatment, but said he felt removal would be better. He removed much of the material that was there, but as usual it has returned almost immediately. It was him that told me there was a long waiting list but that he would refer me.

The hospital were then in touch within a few days with a date for about a week later. Obviously they felt, with the history that there was still a cancer risk. I presume then that there is a difference of opinion between the surgical department and the ENT about the relative urgency. They agreed to delay surgery as I had a weekend away already booked, but they are doing the op two days after I return, so having seen me, they still consider the operation should be done promptly. One side is much worse than the other, and most cases mentioned on the Internet seem to be equal on both sides, so I don't know if they consider that might be significant. I'm also in Norway. They seem to have a different approach to things here than they do in the UK. I was honestly surprised when he said my tonsils would be removed at all.

Just. Having gone through this three times before, i think some people who haven't experienced it just have no idea how to respond. Some of them seem unexpectedly poor at dealing with it. Sorry you are going through that with your friend. I hope you are getting better support elsewhere. After the first time (way before the Internet) i hadn't really realised how isolated i had felt until i met someone else who had cancer. I think you only really "get" what it is like to be faced with the awful possibility that you might have a distanse that could kilo you when you go through it yourself. Others can be sympathetic, but can't really understand.

Disease that could kill you, not a distanse that could kilo. Stupid Norwegian autocorrect....

Incidentally winnybella, that is one of the reasons I feel like a drama queen. I don't know if I should be worried or not but I am, in general alway worried about the recurrence of melanoma. A long time ago, a dermatologist who had studied melanoma extensively told me i would have more. For twenty years i have had every mole that looked suspicious or changed at all removed. I think the GP thought i was paranoid. He was shocked when the third melanoma was confirmed as he had been convinced from its appearance that it was nothing. The dermatologist that removed the second was also shocked when that one proved malignant because it wasn't typical either. I just feel this is something i have to live with and always guard against, even sometimes in the face of medical professionals dismissing my concerns. If i had listened to everyone who told me i was being stupid, i would be dead.

Thank you everyone

Just - your eyes. Is it at all possible that you could have a problem with fluctuating blood sugar. Its what happened to me. My optician who Ive gone to for years just coudnt get my prescription right and one day when driving past a Diabetes clinic I went in on the spur of the moment. Two days later they had me sorted. Im pre diabetic and the medicine Im now on has sorted out my eyes, and most of the symptoms of the menopause that I was still having are also gone. I didn't know the symptoms of fluctuating blood sugar and the menopause were so similar.

Blueyed - what are your symptoms if its ok to ask?

And how are you feeling today?

Tril - she's having health issues and implying its cancer.....won't answer questions. Doesn't want to talk. Just says enough to worry but not reassure. No idea what is going on. DH says she's an attention seeker and drama queen. Often hints at things. I worry. She goes silent.

Weebirdie - I have no idea about diabetes. Never been tested. Been today for tests. That test was fine and hope to get my new glasses next week. Second test disagreed with first test. Guy today agreed with second test and dismissed first one completely. Having paid over £600 I'm not impressed. Plus haven't had decent glasses for weeks so headaches, can't see properly, barely read a book and shattered.

Triliteral- fair enough, perhaps even if they are being overcautious it'll hopefully stop you worrying about it. Btw DS had a huge tonsil on one side and while his doctor wasn't worried, he ended up for some reason in A&E while on holidays with his father, where a consultant decided they have to come out because of the disrepancy in size ( implication being that it could be cancer). After the op he said both of them were same size, just one was 'hidden'. They do seem to play it very safe.
Eeek re melanomas, I also went to dermato a year and a half ago ( as am covered in naevi and lots are irregular etc) and the one she picked as dodgy and for removal was fine and the one she was certain was ok and I was certain that it wasn't was indeed dodgy. Actually, meant to go see someone again about it as I'm not sure excision was complete, just that it was in a healthy zone( per path report) so perhaps should check it out. But then I got diagnosed with cancer and sort of forgot about it. But I can sympathize with having to convince doctors to test or treat stuff they are sure are ok.
And of course you're worried, I doubt there are many people who can just relax after cancer diagnosis, it's a huge shock and it's hard to be calm and rational but it does sound like they are just being cautious.

Just, that sounds beyond frustrating. The last thing you need is someone possibility making things up. I guess in time you might hear enough to know whether there was a genuine problem, or if she was just attention seeking. In the meantime, if it upsets you, can you avoid talking to her till you are in a better place.

Thanks winnybella. In the logical part of my head, I believe they are being super-cautious. That's why somewhere upthread I said I felt like a bit of a drama queen. I just can't stop the more primeval parts of my brain producing adrenaline which just makes me really quite flakey now and then. I am trying to make sure I don't have anything too complicated at work just now as I don't want to be responsible for cocking anything potentially serious up. One of my work colleagues ( the best of them, and therefore a great person to help me ) is aware of what is going on in my head, and therefore I feel very lucky.

Sorry to keep double posting, but I just read your post again winnybella. I would go back to the dermatologist if there is any doubt. All three times I have had a confirmed melanoma, they have gone back in and taken a wide/deep inscision. I don't know what 'in a healthy zone' means but I think it would be worth seeking more information. They are very locally invasive, even if not thick enough for internal spread to be likely.

I haven't read the whole post but also referred due to unexplained bleeding. I'm generally calm - no news is good news, and it's better to be checked out then not. However, I have moments of what-if also. I think I'll be glad when I have the hospital letter with scan dates etc.

I just wanted to share my story. This time last year I was told I had pre cancerous cells. I had to have a full hysterectomy and omentectomy and they found cancer in my ovaries and uterus. Luckily it was doing at a very early stage and the surgery got it out (fingers crossed). Ovarian cancer is a bugger, I had all the symptoms but they could be attributed to other things. 12 months on and I'm doing fine except for dealing with menopause.

Ruby, blimey, what a shock that must have been.

I have a feeling that I will be having a hysterectomy and oophorectomy sooner rather than later and to be honest I'll be glad to see the back of all of these worrisome spare parts.

Can I ask what symptoms you had because I find it really interesting how they could all be explained away as other things. I know that its only now Im on blood sugar medication that most of the symptoms I put down to the menopause were actually pre-diabetes.

Im glad you're doing well now.

Bloating, stomach pain, bleeding between periods. The first two I always put down to my IBS. It wasn't until I went to the GP about the spotting that I was sent for a hysteroscopy. Ovarian cancer doesn't show up in smear tests. It's bliss not having periods but difficult going through menopause at 40. The absolute worse bit of any of this was waiting for results. Xx

Triliteral, hope it is Ok to jump in here, I agree it sounds quite odd to be removing your tonsils due in any part to a cancer risk.

Secondary melanoma normally doesn't present as a black fleck. And it certainly doesn't disappear after a few weeks.

If they are concerned about spread from your primary on your jaw, then that wouldn't be anything to do with the black fleck you saw. It would be a general risk and I have no idea if there is any correlation between having tonsils and likelihood of mets. I think probably not.

Sounds like they are getting the stones issue and the other issue confused?

In any case I hope it is all Ok for you x

Trililateral, I'm awaiting her next letter to see what she says. I do think she has something I was just a bit surprised you could be diagnosed with cancer via a blood test which has come back borderline. I get the irony now I'm being blood tested but it isn't the same part of the body.

If I do have ovarian cancer I have had symptoms for years and I'd be surprised as a previous GP said I'd be a lot sicker. Having said that I know of someone at the same surgery who was seen 30-40 times and died within days of finally getting a diagnosis. Her relative has been with similar symptoms and sent away with a suggestion to take vitamins...

I think changes in blood cells can lead to multiple myeloma and needs monitoring with regular blood tests. The changes are sometimes a precursor - as with unusual smear results.

I know someone who had this picked up through routine bloods when she broke her wrist. It certainly knocked her for six at the time, but after 5 years of being monitored she's just been downgraded. And another who was monitored for 13 years before she died of something else.

So your friend might have something similar? But doesn't excuse her behaviour. I think a lot of friendships are like this. People fall into roles - carer and cared for - and it's a shock to find out it's not reciprocal.

Ruby - what were your 'pre-cancerous cells'? Was it Borderline? That's what mine turned out to be, tho' most never go on to become full-blown ov-ca.

Thanks Thymeout.

I don't feel equal in many of my friendships. I need them more than they bother with me I think. My friends I'd say are closest and have known for longer live a long way away so it's all letters and texts.

Pispcina, how does secondary melanoma present in its earliest stages? Is it possible that a small tumour (primary or secondary) could become visible when the tonsil was swollen (due to infection or other unrelated reason) and then retreat into the tonsillar crypt? I'm really quite vague about the exact anatomy of the human tonsil.

I couldn't really understand your statement "I have no idea if there is any correlation between having tonsils and likelihood of mets." Did you mean tonsil stones?

I know a good deal about primary melanoma, very little about secondary. I am aware that primaries can crop up in all kinds of odd places including in the eyes and oral cavity. I am, because of my history, very proactive in seeking help if anything remotely suspicious appears. I did suggest to the ENT that the small black spot that had appeared and then apparently gone again might have been a small blood-filled bulla, and I think he indicated that might have been a possibility, however again, I don't know enough about human medicine to know whether this is likely or not. It doesn't help that the consultation occurred entirely in Norwegian. I am pretty fluent, but sometimes find it harder to fully pick up on all the implications.

Hi Tril,

First off I'm not qualified in this but did a lot of personal research on the subject a couple of years ago. So don't take my word as law.

I also know very little about tonsils, so I'm no sure if things can appear and then sort of 'hide' in them. I think your ENT would have been able to find it again though, probably, if it were still there. I hope so, anyway.

I'll outline what I do know in case it's useful. You do have a slightly higher risk of another primary, having had a few already. I think you probably know that, but it doesn't mean you will have one.

However - secondary MM is most likely to show up as swollen nodes, before anything else. It is possible for it to appear as tumours elsewhere, eg in lungs, brain etc before being obviously in the nodes, but it is normally not black, immediately, when it does appear. It would just be a swelling with maybe a blue tinge.

You can have in-transit mets which are often very tiny and black, a bit like freckles, and they can be found 'en route' from a primary to a set of nodes. This indicates a fairly advanced stage though (I think) and you would most likely be well aware of spread, prior to it.

Having had a primary in the jaw area, your most likely set of nodes to be affected if it were to re-present would be those in the neck, obviously - the clavical area, the side of your face and so on.

The melanoma that occurs within the oral cavity is I think, a bit different - there are a few types, the sort you have under nails, the sort you have in rather hidden places (mucous membranes) etc.

I wouldn't know for certain but my instinct says that if this were MM (and having disappeared, it's not likely) it would be another primary, not a secondary.

I hope this explains a bit better. And if there are any professionals on the thread, please do correct anything I have got wrong. I'd hate to give poor advice or information.

I couldn't really understand your statement "I have no idea if there is any correlation between having tonsils and likelihood of mets."

Sorry - what I meant was, your ENT wanted to remove your tonsils partly due to concern over their proximity to your primary. I agree with Winny that this sounds odd.

I guess being lymph nodes, your tonsils are always a possible vehicle for secondary MM, however it is unlikely to have presented, if it had, in the form you describe.

Short of sending you for a full lymph node clearance, which isn't necessary at present, (!) it seems a bit daft to remove them on this basis. But if they are going anyway because of the stones then this might be what he means, that they are just one more set of lymph glands and not helping you much. I doubt very much that having them left in increases your likelihood of developing secondary cancer.