Good Morning, I have not long to go now, thank goodness for that. Pain in hips, bloated, not able to walk for more than 15 mins, feeling like I am pregnant waddling around! Monday afternoon I am being admitted for Tuesday op.
★☆★☆★☆★☆★☆★☆★☆★
I need to prepare myself incase I do have OC, and I know I will have a follow up appointment in 3 weeks time where I will have the official path results, but the surgeon will have some idea when he sees it.,, but what happens if OC is there, regards to if I need chemo? What would be good questions to ask? I cant just listen, I need to know more so I feel in control. I was thinking, When would chemo start, who do I get referred to now, is there anything I can do to prepare myself for chemo? Do I need to take someone with me when I havd chemo for driving me?
I know nothing has been diagnosed yet, but these would be so useful to know. Can you think of anything else please?
Carol x x x x x x x x x
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Hi, I can explain what happened in our case. Sandra did not have a major op prior to diagnosis but keyhole surgery to repair a groin hernia. The surgeon discovered a tumour and removed it, ordered a same day CT scan and later that day we were taken into a room for a post op chat. We knew then that the news we were about to receive was not going to be good. He said he was confident it was a cancer but could not tell if the lymph tumour was lymphoma or ovarian until the biopsy results were available. What a day that was, going for a hernia repair and coming back with cancer. The surgeon rang 2 weeks later with the news it was ovarian. Looking back I think it was good that both of us attended that surgery and we have attended all clinics, treatments, scans together ever since. We attended our first clinic knowing nothing about what we were about to embark on suffice to say we wanted treatment elsewhere as Derby was too far for us, we ended up at the Christie. They like most treatment centres offered hope that this disease can be treated. Treatment would start within 2 weeks, surgery would take place midway and treatment would be taxol/carboplatin. We were in no position to disagree. We did,nt know what to expect and it was only be digging deep on the internet that we learned about CA125 and the other treatments that would follow. Like most people you learn very quickly. To answer your post, I suggest someone accompanies you at all times, 2 heads to absorb details is better than one. During treatment you will not feel like driving, fatigue is common. Be prepared for long waiting times. Be sure to get CA125 results, future scan reports as doctors tend to summarise findings. Everyone is differant during treatment, some are stuck in bed for a few days feeling rotten, others are up and about feeling fine. You need to ask what happens if you get an infection, regular temp checks at home are important, with the christie they have a dedicated 24hr hotline, if an infection is detected then admission into them or local is required. Hope this helps xx
Thank you so much for your reply and goodness me what a shock for you both. I will look back on this if my cyst and pain is OC. My cyst 11 cm and segmented was found by luck! I had been having very heavy periods and was referred to a gynae consultant and we went ahead with a Thermachoice procedure to allievate them. That was 8th October. I had an ultrasound scan a week later because I was in pain that showed the cyst, then a ct scan showed the segments inside it combined with a raised ca125 level resulted in a referral to the gynae oncologist and my full abdo hyst is Tuesday!
Bit of a fast moving ride. The scans were done through my private health insurance through work which is why this was so fast, , gosh am I pleased about that.My Ca125 was 351.
Thank you again, this reply will be perfect if I am a confirmed case.
Not long now you will probably follow the same path as me as you are under the same care, as you know my surgeon was 90% certain mine was cancer, he said chemo would start in 4-6 weeks it was actually 8 weeks after op. At the3 week check up it was confirmed it was cancer and what stage, then I was referred to velindre under a different consultant who talked through my options, I decided to go on icon 8 trial and I have weekly taxol/3weekly carbo, I do drive myself sometimes but it very much depends on how you react to chemo, I dont get side effects until 3 days after and its mostly fatique.......
I really hope you havent got to go down this path and the op will be the end of it for you
Thank you Andrea, I really cant wait and get booked in there now! Had a lovely steak salad for dinner, yes same care and pre op as you. Those drinks are in the fridge waiting for me!
It's good you're thinking things through and preparing yourself. I was treated by the same hospitals as you in Wales. I think they have set up the DESKTOP trial by now which offers quite extensive surgery compared to what was offered a couple of years ago.
You will find everyone at Llandough really lovely. It's a very well-run ward. My surgeon came roun after hours to have a chat as she was on leave the following day and said she wanted to see me herself. Just check when you will see your surgeon after the op. Mine asked if I wanted to know what she thought rather than waiting 5-6 weeks for the histology report to come through. I found that very satisfactory.
I think reasonable questions to ask the surgical team post op is whether they have removed all evidence of disease and if any is left why that is.
You will be given about 5 to 6 weeks to recover before having the follow-up appointment. Before I attended that they had held a multi-disciplinary meeting including the surgical team, the clinical specialist nurse and the oncologist from the Velindre. This will inform what, if any, the next course of treatment will be.
I was referred the same day to the Velindre. They were also really lovely but I do remember going in with some sort of horror as the penny dropped at that moment. However, they saw me, explained everything, I had time with the clinical specialist nurse whom I always saw at appointments there, and they showed me round the chemotherapy suite as I was going to have chemo. It all looked very ordinary and mundane and the staff are lovely there too. Should it be necessary to have chemo they will explain everything to you and you'll be given loads of time to ask questions.
The standard NICE approved treatment is a combination of carbo-platin and paclitaxel. You could also ask whether Bevacizumab (Avastin) would be recommended and whether your health board is likely to fund it. In Wales the oncologist has to put in an Individual Patient Funding Request to your health board as it is not a standard NICE approved drug. If it's not available from your health board but it would do you good you could ask how you might be referred to Abertawe Bro Morgannwg Health Board for your care. They fund it automatically without an IPFR being made, and the facilities at the Singleton with their Maggie's Centre are very good. It's further to travel but you might think it's worth the extra effort.
Make sure you're going to be pampered when you come home from surgery. NO LIFTING, not even a kettle of water, for six weeks.
Looking forward to meeting up with you. xxx love Annie
Annie, Some good advice however I do need to correct something here.
The current Desktop study is neither about the extent of surgery, nor is relevant for first line patients. Desktop, as we have said before, is a study investigating the value of surgery in relapse.(second line treatment) It has only recently opened and more centres will come on stream as they go through their individual approvals process. The thing is the DESKTOP surgery itself is not more extensive per se.
Indeed DESKTOP is for first relapse. The point for us in Wales is that 2 years ago patients were told that nobody in the team in Llandough could carry out radical surgical techniques except for a short time surgery was available through a visiting locum surgeon. The surgical team at Llandough have been working alongside the team in the RM to prepare for DESKTOP so in this respect it will have an impact on all surgery available at the hospital. Indeed it provides an option that has been available in England for some but not in Wales which is to have surgery at relapse if the presentation of tumours is appropriate.
I'm meeting Carol later this week so can explain more coherently that anything really that can be put online here.
Hi Paul, As I said, I'll explain the relevance to Carol when we meet up. The point relates to South Wales and not to centres of excellence in England such as Sandra's.
It is important that everyone understands that for both the issues raised (neither of which pertain to the original post) regarding DESKTOP/Surgery for relapse, and the radicality of any surgery, that both of these issues are not proven as beneficial or detrimental.
Relapse surgery is not a part of normal practice anywhere in the UK, however it will be available as part of a clinical trial in any participating centre.
For a full list of participating centres please see here:
Once the trial is completed and the results known then it may become part of accepted clinical practice but as with all new developments, the study may be positive, but equally it may not and may in fact show that relapse surgery does not confer any benefit, that in fact it may lead to worse outcomes.
Ditto 'radical' surgery (although despite Ovacomes advocacy a trial design has not yet been agreed, thus answers to this issue are some years away).
I would strongly recommend that anyone having any questions or wishing to seek further advise on this or any other treatment matters contacts Ovacome directly (0207 299 6650) where they can speak to qualified advisers.
Good luck Carol, I also had Mr h and he told me very soon after op the outcome, he was lovely, they were all lovely down there, you'll be well looked after.
I would agree with what others have said. You normally see surgeon on ward after surgery and they normally can give you indication of whether cancer. You then see in clinic and you should have pathology back by then. It depends how much you want to know but I would ask
The stage of the cancer
The grade as this can affect the treatment.
The type of cancer. There are different types of ovarian
If they have removed all visible cancer
These answers will help if you ever need to speak to anyone else about your cancer.
There thoughts on future treatment
What help is available to support you through treatment perhaps complimentary therapies .
Make sure you make a list of your questions and have a notepad to write answers I found that useful and kept notes of all my consultant meeting in this.
You may see oncologist at same time or later
You normally start chemo 6 weeks latter.
I hope this is helpful but also hope you don't need any of it
Sharon x
Still thinking of you Carol, I hope everything went well love x G x
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you will probably follow the same path as me as you are under the same care, as you know my surgeon was 90% certain mine was cancer, he said chemo would start in 4-6 weeks it was actually 8 weeks after op. At the3 week check up it was confirmed it was cancer and what stage, then I was referred to velindre under a different consultant who talked through my options, I decided to go on icon 8 trial and I have weekly taxol/3weekly carbo, I do drive myself sometimes but it very much depends on how you react to chemo, I dont get side effects until 3 days after and its mostly fatique.......
Anyone currently taking tamoxifen for OC.
Would love to hear from ladies diagnosed with advanced OC
Is it common to have chemo prior to surgery?
To ask or not to ask that is the question? UPDATE 
Is it just me who forgot to be assertive?
