Diagnostic Frustrations

Hi,

I was diagnosed with a rare form of ovarian cancer at the end of March called Primary Peritoneal Cancer (PPC) in Winchester. I decided I wanted to go home to Manchester for treatment and a couple of weeks ago I was seen in the Oncology department at The Christies. My original diagnosis was based on cytology, blood tests and CT scans but The Christie are not happy to start me on chemo because of my age, the fact I appear well and because I've had no tissue biopsy.

I was referred back to a gynaecologist and I met them the next day with the MacMillian nurse. I went into hospital last week to have an omental biopsy under ultrasound. I waited round the ultrasound department on a bed for what seemed like ages and when I finally got put in a room I was told there wasn't enough fluid for a drain (I had a drain 2 months ago). I started to cry and said to the Jnr doctor that he didn't know what he was doing and that I was there for a biopsy not a drain. Then the consultant radiographer came in and had a look at my abdomen under ultrasound but said she couldn't see anything clearly to take a biopsy.

Then I had to wait around more corridors for a CT Scan. They had real trouble finding somewhere to biopsy I don't know why but eventually I was given a local but it was still really painful. I was hoping to find out the results today but now I'm being told that the pathology isn't ready and that I will have to wait a week because that when they have their MDT meetings and we need the biopsy to confirm my treatment plan.

I'm feeling frustrated.....

28 Replies

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  • Wow! Who wouldn't be frustrated!?

    I'm so sorry all this has happened to you on top of what was happening already! However, taking things from where you are now; a week needs to be got through. Are you ok with the McM nurse? If so, ring her and talk about your frustration. She might get the results earlier, or at least let the others know how frustrated you are! Then set your mind on your next appointment, and 'park' it for a week to do other things. Ironically; it might be good news that they found it so difficult to get the biopsy! Take a weeks 'holiday' as much as you can, and do things to take your mind off it.

    Lots of love. You'll get through!

    Hoping for good news for you very soon.

    Isadora.

  • Thanks I now I'll get through it but I wanted to express my frustration. They are not talking about me not having cancer they just want to be sure where its coming from because it will effect my treatment plan. My last CA125 was 2400 but I'm fine mostly sometimes if I like on my right or bend down breathing can be a bit uncomfortable but apparently I have a pleural effusion in my right lung

  • I can see why you wanted to rant - it can be very frustrating when you get passed from pillar to post but I am certain that the advice you got from Isadora is the correct path - speak to your McM nurse about your feelings - he/she is trained to deal with this emotions on a daily basis tho each patient is different. Try to get out and about by doing your normal daily routine if you can. Its not easy but try to relax and concentrate on perhaps making a list of questions for your next APPT - I found that helped me focus on the positive.

    Hugs to you,

    Sheila:)X

  • Good job you are on your toes... It is hard when you are anxious. Rant away I do... My days of being at the back of the queue have gone .Bonne chance Linda

  • I will try MacMillian again but they may not want to give me the results before they've had chance to discuss it at MDT (Multiple Discipline Team) and they won't meet until next Wednesday. I've got lots of plans to keep myself busy between now and then.

    Thanks for all your support.

  • You have had a very frustrating time and like others have mentioned, it is perfectly understandable that you are feeling as you are. I am one of the support nurses st Ovacome and if you would like ot talk things through please feel free to give us a ring on 08453710554 Mon -Fri 10-5. Getting the results wothout knowing what is going to happen might be confusing for you.

    Best Wishes Ruth

  • I'm not confused - the question is whether this is peritoneal or ovarian cancer and I now one will involve surgery and will just be chemotherapy (although I know no-one can't promise that surgery will not be required at a later date).

    I've spoken to my MCN nurse and she completely understands how I feel and is trying to get the pathology results for me so I know which one I am dealing with. The pathology hasn't been carried out due to a backlog and all the gynae consultants are in Cardiff.

  • My concern is that there wasn't enough tissue and that the results will be inconclusive. In that case it is likely that I will need a further procedure either keyhole surgery or maybe even to open me up completely to get a biopsy.

  • How come 'the gynae consultants are in Cardiff'? I've been fighting with the local Primary Care Trust and NHS, who want to close the surgery at our local hospital for gynae/oncology, and move it to another 40miles away, creating a 'centre of excellence'. I was told at the 'consultation' (which turned out to be a selling campaign for a decision that had already been made) that the surgeon who operated on me 'would not be considered sufficiently qualified' - despite having made it his life's specialism and being pretty eminent in the field (not to mention having saved my life which makes him ok in my book!). Luckily, the decision was chewed up in the change of government, and is still not instigated. It sounds as if your frustration is a product of a similar arrangement - or am I wrong?

    I'm so sorry these things are happening to you!

    Isadora.

  • I don't know why they are in Cardiff but I assumed it was some sort of conference but seemed a bit off that there is no-one about. Maybe its just the out-patients clinic?

    No my frustration stem from the fact that I changed health authorities from Hampshire to Manchester and in Manchester they are a bit more thorough and insist on a tissue biopsy before finalising the treatment plan.

  • I had an omental biopsy in York befiore my plan was formulated. York has been brilliant withntuhat sort of thing and I get my treatment in Leeds which is one of the premier centres in Europe. My McMillan liaison nurse is my oncologist's wife and all goes well so far.

    My CA125 was 11,000 on diagnosis, 6 at the end of the 1st round of treatment, went up to 300 before the current round and now it is 75 despite an allergy to carbo platin and a change to cis platin. I have 4 more cycles of chemo to go. They take 25 hours and the steroids stop me sleeping but it isma small prIce to pay

  • The MacMillian team have spoken to the pathologist today and my biopsy sample is too small so looks like I might have to wait for a laparoscopy now. I want to cry.

  • I'm sorry! What a nightmare.

    How can we (on here) help??

    I. xx

  • It really helps to be able to post on here and know that other people understand. I felt much better after I'd posted on Friday. Not had a particularly good weekend as been feeling a bit breathless and sick

  • Just back from a few days in hospital. They admitted me onto the ward because I was feeling breathless just to check me out in case it was a PE. It wasn't just a bit of fluid on the lung. I'm booked in for a laparaoscopy on Tuesday.

  • I warn you know I am going to rant a bit because I've had a bad day and a close friend has just p*ssed me off.

    I had my laparoscopy on Tuesday it all went to plan and I'm home now. I've not had a good day today I've been suffering with trapped wind and it hurts to get up and about. I'm also moving like a little old lady. I've really struggled today to get comfortable so I'm worrying how I will cope with a hysterectomy. I'm already fed up of being poked, scanned and cut open and we haven't started treatment yet. I'm scared of treatment more than I am of dying probably because I don't consider death to be a reality.

    I told a close friend how I was feeling and he told me to stop being negative and started going on about his gran having a hysterectomy then living for 47 yrs. I'm tired of people telling me to be positive or to stop being negative like I'm not already trying my best.

    I just feel angry and frustrated because I can't enjoy the things I normally enjoy doing.

  • Sorry about your bad day!!

    Yes - people do really shy away from our frustration and anger. I suppose it makes them feel helpless. You are entitled to a bit of a rant after what you've been through...go for it, I say!

    I don't suppose you can even kick the hell out of a cardboard box at the moment!

    I feel sympathy with what you say about treatment - but if my experience is anything to go by, it is worth crawling through it, and getting to the other side.

    I so so hope that will be the case for you too!

    Very best wishes,

    I.

  • I just thought I would update my blog with the latest news. I had my laparoscopy and I got the results which showed I had borderline cells in my right ovary and my peritoneum but there was also an invasive implant. This took quite a bit of getting my head round as I had been informed a few months ago that I have a more advanced cancer.

    I will be now having a TAH-BSO in just over a weeks time but I won't know until after the operation if I will need further treatment.

    I've had a slight complication that I've had a build up of fluid around my lungs, which I had to have drained off before they could operate. They found some cancer cells - papillary serous cells in my fluid but a recent CT scan showed no evidence of disease in my chest.

    I'm having my pre-op on Monday so they can do another chest xray to make sure there isn't another build up of fluid. I do hope not it was rather a painful process and although they gave me morphine I was still in lots of pain.

    I've been reading up a lot about borderline cancers and how some patients feel like frauds and don't class themselves as cancer survivors. I think they are I think having major surgery is a big deal. I've also been looking at the John Hopkins website they do lots of research into ovarian cancer and I'm starting to appreciate how complex OC is. Even borderline cases they have sub-typed and I read about one sub-type called Micropapillary Serous Carcinoma, which is a borderline cancer that has the properties of a low grade serous carcinoma. It usually affects both ovaries and is associated with invasive implants in the peritoneum. It does have a better prognosis than aggressive forms of OC but a slightly worse prognosis that other sub-types of borderline cancers as there is a higher incidence of reoccurance often requiring multiple surgeries. Being slow growing it doesn't respond particularly well to chemotherapy either.

  • Scaredy,

    No wonder you're having a bit of trouble 'getting your head around' your news. It's absolutely fantastic not only that the disease is not as advanced as was thought, but that the grading at laparoscopy was 'borderline'. I found that getting to grips with the 'borderline' diagnosis took me a bit of time though; perhaps because it is rarer than other forms of the disease, therefore less researched and difficult at times to explain to others who want to know if you have 'cancer' or not.

    My ovarian tumours were found to be of the 'borderline serous' type following my BSO last summer (laparoscopy had been inconclusive) and during surgery I was found to have implants in the peritoneum. However, since having surgery these implants have disappeared. My consultant had informed me that this might happen, indeed, it was what they hoped for, once the primary tumours were removed. Like you, I certainly consider my disease to be very serious and personally I do consider myself a cancer patient, since although the tumours were borderline, 'borderline' is not 'normal'! However, if you like to look at the literature, your doctors should able to suggest particularly helpful articles once they are sure what type of 'borderline' you have - I did an Athens search myself, then my CNS handed me several abstracts which was a big help.

    Wishing you all the very best for your surgery,

    Cat

    xxx

  • I think what worries me slightly is that my CA125 levels seem to be higher that other people that have had borderline tumors and that I've had these other symptoms like ascities and a pleural effusion.

    How did you first find out that something wasn't quite right?

  • I'm afraid I don't know what my CA125 level was, but I know it was elevated. My GP did impress upon me however that the CA125 level is not a reliable indicator - have you found something in your reading that links the CA125 levels directly to the degree of malignancy? (As I understand it it is a general measure of inflammation and can be elevated by IBS etc.) I actually didn't have any symptoms at all so I didn't know something 'wasn't right'. I was just extremely lucky to be picked up by a GP who had previously trained as a gynae. In hindsight my periods were often somewhat irregular, but my doctors have always said that could be down to stress at work etc. I actually went to see the GP about my acne, of all things (I thought that as I was 32 at that point it should maybe be calming down!) My GP asked me about my periods, and thought I might have PCOS; since my husband and I wanted to start a family she sent me for vaginal ultrasound and that's when it became apparent I had tumours.

    Although I did not present with ascites, I have had trouble with this since - I had IVF treatment before BSO to retrieve and store eggs, and developed ovarian hyperstimulation syndrome, had to be hospitalised separately for this and 'drained' as the ascitic build-up was so great. My tumours turned out to be strongly oestrogen-receptive which apparently probably accounts for the ascites. (Unfortunately it also means I cannot have HRT). I am monitored at the moment in case the ascites returns but the risks are considered balanced enough to let me attempt pregnancy just now. However my treatment will not be considered complete until I have a TAH as you are having, and the timing of this will depend partly on whether CT scans show the ascites is returning.

  • Actually what sets IBS apart from IBD like Crohm's Disease and Ulcerative Colitus is that it doesn't cause an inflammatory response

  • I agree other things can elevate your CA125 but in speaking to other women with a borderline tumors their CA125 levels were much much lower. Its interesting what you said about being stimulated by oestrogen I was on the combined pill until very recently and I've wondered if that was the reason for the slow down

  • I've been claiming ESA since I finished work and I had a medical certificate that covered me from the 18 April for 8 weeks. I didn't claim ESA until 3 May so my sick note also covered the last few weeks of work. My sick not was due to expire on Friday so I got another note from my new GP practice on Friday and sent it off.

    I checked my bank balance today and I haven't been paid so I rang them to find out why and i was told my sick note expired on the 8 June so I got really upset on the phone and insisted it hadn't and that my original sick note was dated from the 18 April for 8 weeks. The person on the phone couldn't deal with my call so now I'm waiting for someone from my local benefits office to call me back.

    I just feel like I can't deal with this bullsh*t anymore I've rung the MacMillan benefits adviser and left a message but I'm still pretty anxious and upset.

  • I had my hysterectomy last week and recovering relatively well although will be glad when the staples come out as can't get comfortable and I have the shakes but that could be stress.

    I got the results of my histology today. As usual its not straight forward I have all 3 types of cancer borderline in my ovaries which have been removed, some low grade serous on my fallopian tubes also removed and then some high grade serous on my peritoneum and around my bellly button.

    I will be needing chemotherapy as well but I do feel some sense of relief now we have a definitive diagnosis

  • So glad you got through the hysterectomy OK last week and hope you'll be feeling more as if you know what's ahead of you now. The team that are looking after you will be doing all they can to make sure your chances of recovery are optimised. I found after my op that I wished I could have chemo, mine were borderline and I had one tumour on each ovary and some growth in the omentum. I kept wondering if they had got it all out in my op. I think chemo, although it's not something anyone would wish for, gives you a sort of safety net. You must now treat yourself gently and rest as much as you need to.

    Good luck,

    Love Wendy xx

  • Chemo doesn't work on borderline cancers Wendydee so you would have put your body through all that stress for nothing. I'm slightly worried about the low grade stuff as that also doesn't respond well to chemo I'll ask more about that when I see the consultant on Monday.

    Staples were removed today.

  • I had a meeting with my consultants registrar today. Although they still can't confirm if I have ovarian or peritoneal cancer they could confirm it was stage 4. I'm meeting with the oncologist on Thursday I've been told to ask them. I know its not that important and the treatment is the same but I'd like to know to satisfy my intellectual curiosity.

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