Advice Please

Hello Everyone, I haven't posted for a while as I haven't had anything to report, but I do read most posts on here, and am really sad that we have lost two valuable members of this forum over the Christmas period.

I've always felt a bit like I shouldn't be a part of this group as my disease was borderline, and not full blown OC, but I've always stayed in touch because I can write down on here what I'm really feeling, whereas in the real world as far as my family are concerned, everything is fine and dandy. Anyway, here story so far, hope I don't bore some of you as I have told some of you already:

Diagnosed 3a borderline November 2012, full debulking including omentum, appendix, cervix and part of bowel. Excellent recovery and all was well until a year later. I then started experiencing bowel problems and fluctuating CA125. I've been given medication for IBS. My last scan was done in October where a very slight change was noted on my diaghrafam. I'm due another scan in February.

In the meantime I'm feeling absolutely fine in myself but I have been experiencing shoulder pain which is relieved when I empty my bowels. I've had this before and have put it down to IBS but this morning the pain in my shoulder was really bad when I emptied my bowels. Sorry if this is TMI.

On top of this I keep getting these red spots on my face across my cheeks. I know rashes have been mentioned recently so I'm getting a little concerned. The spots are there one day and gone the next, so is there a connection or am I being paranoid.

Kerry x

17 Replies

  • Hi, I don't know anything about the spots (teenage ones maybe) I jest. But I do know about the shoulder pain being referred pain from the bowel. I suffered terribly way back in March with a twist/blocked bowel, never fully explained, but I was told the pain in my right neck/shoulder was referred pain from the bowel, and yes it goes when you have a bowel movement. In my case my insisial hernia was partially blocking the bowel. Hope this info helps. Trix.

  • Sorry ,sorry that should read left shoulder NOT right. Can't see how to edit.

  • Kerry, my simple answer is I really don't know. However as you are concerned I do think you should consult your GP to tell him/her of your fears. I never really understand the gradings either, borderline but 3a. You have every right to be on here, your worries are the same as mine and no doubt be very one else. Do speak to someone about your concerns. All the best. A nn xo

  • Hi Trix, its my left shoulder as well. I also get the pain when I eat certain things, oranges, grapes and pickled onions. The pain in my shoulder yesterday morning was really bad, and I can also feel pain low down in the left hand side of my abdomen, which is relieved when I empty my bowels. I has this shoulder pain before my surgery and it went away for about a year and came back again. Could it be IBS or adhesions? I'm loathe to see my GP Ann as I'm due another scan in February so I'm pretty sure she will tell me to wait and see what the scan reveals. My understanding is that I was graded 3a because it wasn't contained to the pelvis and tiny particles were scattered on my omentum. I think I'm getting a serious case of the collywobbles as I know I've got another scan coming up....we all know how that feels. Thanks for your advice ladies, I think I need to get a grip and stop panicking, so I'm off to Argos to buy myself a new steam cleaner and do some spring cleaning. A bit early for spring cleaning I know, but it keeps my mind occupied. Have a good day everyone. Love Kerry xx

  • I'm Borderline as well, but mucinous, not serous.

    I would go to your GP now. Don't wait till February. It sounds as if it might be related to a bowel problem, rather than a recurrence, especially as they did surgery on your bowel when you had your op. You're having significant pain, you've a history of bowel problems. Best get it investigated to avoid a dash to A&E. Btw, I've read that Ca125 is a v unreliable indicator for Borderlines. Some doctors don't bother with it in follow-up checks.

    Ann - I know. It's confusing. The Borderline staging uses the same criteria as for OvCa. Confined to one ovary, Ia. Spread to other ovary, 1b etc. But the cells involved are different. It was explained to me that Borderline cells share some of the characteristics of Cancer, but not the most lethal ones. They can't invade and destroy another organ. Just sit on top of it. This can create problems, too. But whatever they do, they do it very slowly. Most Borderlines are Stage 1 when diagnosed, even huge tumours like mine. Some oncs think Borderline staging should start at O. Anyway, 3a Borderline is v different from 3a OvCa in terms of prognosis.

    Good luck with the spring-cleaning, Kerry! My post-op enforced holiday from hoovering is in danger of becoming permanent. I've got v. lazy.


  • Hi Kerry, that's exactly how I was back in March, before I had the episode as I call it , three days before I ended up in A & E I had the pain in my left shoulder right down to my kidney area and it was excruciating. Have a look at my posts, I think the story is there. Afterwards I could not eat anything that caused gas, bananas, apples, greens, loads of things, I did some research on it. I was OK with meat, apparently protein does not cause wind. I had to change my diet, eat less, activated charcoal helped, it absorbs gas. Had to do a lot of self help but it was a bad time, I would rather have had chemo which says a lot. And it was all caused by my hernia in the tummy from the op, partially blocking the bowel. I still suffer abit but I know now if I get the pain in my neck to take a domperidon, do some tummy massaging. It took months to get back to eating normally, and my scan at the time was clear. It was a cancer GP that told me it was referred pain from the bowel. So if you have a hernia this could be your problem, I do hope so, and that it is manageable, and nothing more. Best wishes Tried

  • Heck Trix, just read your posts, you've certainly been through the mill. Did you have the pain every time you ate ?

  • Hi Kerry, sorry for the delay in replying, for some reason your replies are not coming through on my email, its only by checking the post that I find them. Yes I did have pain nearly every time I ate. Just a yogurt would give me pain in the left side of my neck, and I would have to constantly burp for hours for it to subside. It was trial and error and I lost half a stone in weight. I took charcoal tablets and the Dida that I have in my posts. I was told the pain in my neck was from the phrenic nerve in the diaphragm because of inflamation in the abdomen. One nurse told me that some people complain of it after abdominal surgery. GPs could not help, just Buscapan, Amtripline, but the best thing I found was Domperidone which moves the food out of your tum quickly. I had to do alot of self help, research and it took months for me to return to normal. Going on my experience I would say the problem stems from your bowel so see the oncologist if you can, GPS in the main do not understand, Good Luck. Trix.

  • I am not sure what side your shoulder pain is on but if on right hand side and pain below the ribs, you may have an inflamed gall bladder. God knows I am no doctor so just guessing. I would agree you go back to your gp and ask him to check. I know we do get worried coming up to scans and sometimes for no reason at all but its wiser to get it checked out if uncomfy. Make an appointment with your gp tomorrow to be sure. Wishing you all the best, yes I agree we lost two lovely members recently and it is hard for their families and we also miss them.

  • Hi Suzuki it's my left shoulder and it sometimes goes along my collarbone and up into my neck. I've even had pain in my ear, like earache. It's really strange. I pickled some onions a few weeks ago and when I had one at Christmas the pain was excruciating. X

  • Hi Kerry - I have read your post with interest as I have been experiencing something similar. I was diagnosed with psammocarcinoma in September - which is a very rare form of OC - and has similarities to a borderline tumour. When i had my total abdo hyst the surgeon had to leave a little bit of the disease on my bowel as too tricky to remove it. For the last 3 weeks I too have had shoulder pain on my left side - and it also radiates halfway down my left arm - not affected by what i eat though it's there all the time. I'm hopefully able to see my GP tomm.....though I think he may just tell me to wait for my next scan which is the end of this month......I know this isn't really any help to you though.......!!! Will let you know how i get on....In the meantiome well done on the early spring cleaning - I haven't quite got my zest back yet for cleaning!!!!!

    Helen xxxxx

  • Hi Helen, Sorry to hear you've been experiencing this pain as well. I'll be interested to know how you get on so please keep me posted. I've made a good start on the spring cleaning and hubby has made a start on decorating our kitchen so I'm feeling cleansed lol. Xx

  • Hi Kerry

    As I'm sure I have said before I have had the same pain I went to A and E with five years ago. ...similar to what you have just described and often down my right arm. When I was finally put on low dose medication for it the arm pain eased almost overnight.

    So sorry you are still suffering though xxx

  • Hi Charlie, What medication are you taking for it ? X

  • Kerry I am on Amitriptyline.

    It has been a life saver.

    Charlie xxx

  • Hi Kerry

    I'm sorry to hear about your shoulder pain. Reading down the posts I realise now that it's quite common to have referred pain. You've had loads of good advice here and it must be something of a relief to know you are not alone - though one never wishes pain on others of course.

    I just thought I'd mention spots as I've had spots on my cheeks for nearly a year now. My GP looked at them and was going to send me to a dermatologist then thought it was better to leave them as I was on Avastin and she thought they would disappear in time.

    They were quite sore if I rubbed them, and always rather red and angry. Sometimes they'd disappear for a day or so, then reappear. I tried just about everything locally and the best product for my skin was Kiels facial products which you can get in John Lewis.

    I stopped Avastin at the end of October, and over the Christmas break the spots have cleared up completely so my GP's hunch seems to have been the correct one.

    I think I'd see the GP about those spots and the pain in your shoulder. He/she may have some helpful advice.

    Here's to a Happy and Healthy New Year! xx Annie

  • Thanks Charlie, I think maybe a visit to the Dr's is in order after all. Annie, my spots are red and angry some days and other days they're not too bad. I've always been very lucky with my skin in the past so I'm quite self conscious of them. My mother in law, bless her, comments on them when they are particularly bad. She lovely, but doesn't always engage her brain before opening her mouth. I will go and see my Dr to see if she can suggest anything, if not I will try some of the Kiels products. Many thanks everyone for all your help, Kerry xx

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