Got a date for surgery :) But confused over further issues with breast :(

Hi all,

I was told that my CA125 was raised following it being checked due to bloating, lack of appetite, bowel issues etc etc on 4th April; around 7 weeks ago. I have had bad symptoms since August last year which were eventually explained away by being told by 3 doctors it was diverticulitis in December2015. Because of this I didn't chase it up further, even though I kept feeling worse and getting bigger, until the end of March. I was given ultrasound a week later - terrible pains by then and have been off work since - which confirmed a large tumour/mass of at least 28x28x20cm. Had CT a week later which revealed it had multiple chambers and mixed contents. Originally was told it was urgent and likely to be cancerous and being sent to local centre of excellence after two local MDT meetings. MDT at centre said they thought it is probably borderline and can have it locally. By the time I have this done (7th June), I will have been waiting for 8 weeks. During that time the thing has grown expedentially (Strangers ask me how overdue I am, one asked if I needed taking to maternity as she thought I was in labour!) Without exaggeration I look as if I am pregnant with quads. I haven't been able to do anything but lie down for 5 weeks and that's with the help of Tramadol. I do hope that their assumption is correct as if not, and it turns out to indeed have a cancerous nature, then weeks and weeks have gone by with nothing being done.

Secondly, my CT revealed a suspicious area in my breast. I went for mammogram, ultrasound and was then punch biopsied (all together). The radiologist (a senior doctor) told me that I had cancer, but it was small and maybe they could be operated on together. I went for the official results last Tuesday to be told that the biopsy had been negative - benign. However, I had to have an urgent retest done. I went for that today and the first thing I asked was what had the radiologist staged it at the first time - the man seemed a little surprised I had asked, but confirmed, as I had suspected, that she had listed it as M5 (malignant). So, another 4 punches have been taken today and he x-rayed one of the samples to ensure he had 'hit the right spot'. I now have to wait another week for results again. I asked if could possibly have them sooner - even if not final after MDT - as I would be in hospital next Tuesday as I was having my surgery. The radiologist then said, 'Oh, are you being induced next week then?!?!'... Completely non-plussed that there is clearly NO link up here what so ever. Same hospital - same floor - grrrr...

I am having a total abdminal hysterectomy, uterus, fallopian tubes, ovaries, cervix and the hideous growing beast all to be removed. How long is it usually before they have some idea of staging/results from this? I have not had any biopsies done on my abdomen/gyney bits which is what worries me about the amount of time I have had to wait.

I guess I just needed to vent to people who would understand. Thank you for listening x

18 Replies

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  • Gosh talking about not reading your notes before your appointment, what a doctor? I wish you well for the surgery next week and hope all goes well. Hopefully there is some communication between the different departments before then. They will do biopsies at time of operation, try not to worry, I had a fine bump as well and I am here ten years later. You should have result before you leave hospital and if none is forthcoming, I would think refuse to leave until you have results, you are waiting to long and it is draining mentally and physically. Also if you do get positive results, ask to see oncologist before you are discharged. I had to do that I am afraid. I didnt want to see him at all none of us do but I just put my foot down because gynae onc was on leave

  • Thank you Suzuki x I was already wound up and frustrated beyond measure as any movement causes pain and discomfort so I am literally bed or sofa bound. It is difficult to breathe properly and for the last couple of days my whole upper abdomen (the tumour already went from just below my ribcage to my pelvis 7 weeks ago and it's grown a lot since then) is as tight as a drum. Standing up straight causes pain. I almost walked straight into A and E with my husband on my way out from the biopsy today as I feel so unwell - My urine is more frequently than not also rust coloured now too, so I think there could well be blood in there. It would hardly be surprising as there's no room for any other organs - heaven only knows where my kidneys, bladder,bowels, lungs and stomach are finding themselves right now. The only thing that stopped me was that I imagine they will just say, well it's all in hand for next week, what do you want us to do? x

  • Personally I would go to a and e at another hospital. It seems really poor treatment to me. You have been very brave tolerating the pain up until now but I'd be jumping up and down somewhere else where you are likely to get treated sooner.

    LA

  • Thank you Lily-Anne. I can't drive at the moment and even if I could, my husband has gone back to the pub he runs in another town with the car. I didn't actually go into A and E - kind of due to having taken myself up there in doubled up excrutiating pain just over 6 weeks ago, whilst waiting for my ultrasound, but after raised CA125 was known about. I couldn't breathe in and out, couldn't stand straight at all and told them it was at least 9 out of 10 and had put me on my knees earlier. They gave me intravenous pain relief which brought it down to about a 4, but it could have just passed over too (which I told them as I had been having these for days). The surgeon (general) on call said she was sure it was a gyney issue and they refused to come down as they said that if the pain could be managed with pain relief and a scan was already booked in 3 days time there was nothing they could do more. Unbelievable. At the time it could have been something rupturing or anything and they didn't even bother to come see me. I felt so sidelined and ignored. It has put me off asking for help as I just feel I will be dismissed again.

  • Which hospital is this?

    LA

  • One in North Yorkshire in a very affluent town (not me sadly!). In the past they have always been excellent on most things I just feel let down and side-lined over the last couple of months though. I think it is a shock for all of us (certainly has been for any of my family, friends and colleagues) that once they have discovered you have a HUGE growth in you which is life limiting at the very least and presents as borderline (but will not be confirmed until surgery) that 'urgent' and 'priority' is 8 weeks! You always imagine that if something is found and confirmed you would be rushed through and dealt with ASAP - certainly within a week or so. However once you have an appointment, wait a week for results, then another week for an MDT meeting (only held once a week), then its all repeated again and again - this is where we find ourselves. It is so frustrating to know that if I had money, or private health care that this would have been dealt with weeks ago :(

  • Have you spoken to Macmillan? My nurse is lovely and chases up everything. This doesn't sound right to me. Or call Ruth at Ovacome she is great for advice

    LA

  • I think you should telephone your surgeons secretary and ask her to connect you with the Clinical Nurse Specialist. Tell her about the colour oif your Urine and how uncomfortable you are and your problems breathing. Also bring to her attention the recent breast biopsies so she can advise your surgeon if he hasn't already been informed.

    It is most likely an increase in ascites that you have that is causing your abdomen to feel tight and your shortness of breath. Ascites is fluid and this can be very uncomfortable. It caused my shortness of breath.

    My surgeon was able to tell me that I had cancer and would need chemotherapy the day following surgery. I was told the stage by the oncologist at an appointment about 3 weeks later. Chemo can't start immediately anyway, as it can cause a break down of the surgical wound. My chemo started 4 weeks later.

    Unfortunately a lot of us are missed, misdiagnosed etc. Initially I was told by a Dr at my local hospital that there was nothing wrong with me. Then my GP decided I had irritable bowel syndrome. 3 months after being told there was nothing wrong a private appointment with a cons gynaecologist revealed the tumours on my ovaries.

    P!ease make that call. Good luck. Ann xo

  • Your growth is growing very quickly. It could possibly be a benign cystadenoma. I had one at some point. I was hospitalised four times before it was found and then it grew very quickly. I was 17lb lighter after the op having waited months for surgery. It's very distressing but you'll feel much better after the op. The psychological impact at looking pregnant is hard I know. Xxx

  • A quick reply about how long it took for me to get my results: my complex mass was much smaller than yours at 10x8x5. Frozen section examined during surgery showed no cancer and a possible mucinous benign tumour was noted so no lymph nodes were sampled. I received a telephone call from my consultant surgeon (oncologist gynaecologist) 9 days later who told me that the full Pathology report shows I have clear cell ovarian cancer. I was staged at 1C due to rupture of mass and also cancer cells found in abdominal fluid.

    Due to the frozen section report I had a sub optimal staging and interestingly having read a more recent medical report I understand that there is a proven trend that clear cell can be incorrectly diagnosed as a mucinous benign tumour during frozen section review. But anyway I received my full report 9 days later.

    Take care

    Clare X

  • PS - I was also told before surgery that the frozen section may not be an accurate reflection of the situation.

    Clare

  • Morning marthasperson,

    I still can't quite believe the waiting game you are still on.

    It seams hospitals have different ways of dealing with suspected cancer and different ways of dealing with the treatment after diagnosis.

    I still don't quite understand how they decide to do the operation first, Or half chemo, op then other half chemo Or 6 chemo then the op??

    After the results of my ct scan I had biopsies taken/fluid drained and within a week a diagnosis of stage 3c ovarian. It was decided chemo first, then op, then more chemo for my treatment plan.

    As your treatment plan is to operate first, it probably makes sense to do the diagnosis at the same time. This however leaves it such a long time with the mind wandering all sorts. For your mental health I'm not sure this is the best choice.

    I'm surprised you haven't had the ascites drained considering your in so much pain. Have they not mentioned this to you??

    In terms of weeks, it was about 8 weeks before my chemo started so I too worried that the tumours continued to grow.

    Your operation is not long to wait now, so try and focus on the fact that if it is cancerous it will be cut out the best they can and be virtually or even all gone.

    Regarding your breast diagnosis, will they do both operations together if it is cancerous?? It may be too much for you to deal with together??

    You certainly are going through a tough time at the moment, but try and stay positive, I know the waiting game is horrible but you will get there,

    Take care, thinking of you,

    Mandy, x

  • Hi Mandy, Thank you for your kind words. In reply to the ascites query - I asked if there was any way I could have it drained at my appointment with the surgeon 4 weeks ago and he said there was no point as if they did this it would simply refill in a matter of days. Also said that it was so large that he was pretty certain that it would reach maximum capacity soon and physically wouldn't be able to increase in size as there was no room left... xx

  • Mine didn't come back after it had been drained, but I suppose we are all different. Just thought it would of been worth a try to try and relieve your pain. Again a difference of opinion between consultants.

    I do hope you get sorted next Tuesday. It will be amazing when u come round after the op and all the fluid is gone. I lost a stone in weight. It will be great. Xx

  • Can't help with the breast issue, but I, too, had a 22cm tumour which my local hospital - no gyne-onc, just an ob-gyne - thought was ov ca from CT and MRI scans. I did have a biopsy, which was 'inconclusive'. I think they only tested fluid, not the tumour, because they don't want to puncture the tumour and cause spread. They couldn't say it was conclusively benign or Borderline, because they need to take out the tumour and have a pathologist examine it in the lab. If they had found cancer cells, I think I may have had chemo first. I'm not clear about this because my information came from a CNS at the local hospital, who, frankly, wasn't v good.

    I was referred to a specialist centre and the consultant gyne-onc told me immediately, from the same scans, that he didn't think it was ov-ca. He operated and immediately after the surgery, told me it wasn't cancer. Two weeks later, at my post-op check-up, he had the results from the lab and it was Borderline. Ca125 of 130 was caused by tumour rubbing against other organs.

    The whole thing, from first visit to GP to surgery took 6 weeks. Might have been quicker if I'd been referred to the teaching hospital first, but that's how it works in my area. And I didn't have your horrendous symptoms, no pain, just a bit of indigestion and stress incontinence.

    Hope that somewhere in this essay, you will find something to reassure you and that you will be as lucky as I was.

  • Hi Marthaperson, I think you should ask your gp to intervene asap. Also someone suggested contact the Macmillan Nurse in your hospital or the nearest Mac Centre. I certainly dont think this is acceptable to have you like this. I know I ignored mine as it suited me to ignore it but when the gynae actually saw me before theatre, he wasnt a happy camper. But I hadnt put any great pressure on the surgery apt. I did however keep tormenting his secretary in the hospital and I eventually got an apt for surgery after a few weeks of campaigning. Looking back I should have been noisier. I really think enough is enough

  • If it's ascites, can they not drain at least some of it?

    I had about 10 liters of fluid in my abdomen when I first presented to the GP and hospital, but the hospital drained 5 l of that right then and there (not painful) so I'd have an easier time moving and breathing while waiting for the surgery. That helped a lot.

    Please get your husband to back you up and stir up a real storm so you get relief. No way you should be left without treatment given those symptoms.

  • I got even worse and they have admitted me. I will probably be here now until I have the op on Tuesday. As I am so huge the doctor has had discussions with others and radiologist and was going to try drain. He has come back and discussed it with me though as he is concerned about the risk of spillage. We have decided that the risk is too great to take for the sake of a few days pain so I am going to stay on pain relief in here unless anything gets worse xx. Thank you all for support x

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