Well its been a long time since I posted and a lot has been going on
Due to the difficulties I had with my treatment last time at the end I decided to ask my consultant about getting a second opinion so that I could find out if there were any trials or other treatments available as at the time the thought of starting third line chemo in six months was shall we say less than appealing.
As I lived in wales I was concerned as to whether I could get a second opinion in England. I asked my consultant about it and he was all for it and thought it was a very good idea. I was releived that he was not offended in fact he seemed delighted I had asked. After quite a bit of research and sole searching and a lot of help from ladies on this site and staff at ovacome I decised that I wanted to get a second opinion at The christie in Manchester. I did consider the RM but decided the journey if I was treated there would be too much for me and my family in particular my dad who comes to all appointments with me.
I went to my doctor and to my astonishment was told yes I could go for a second opinion and no I would not have to wait for funding requests to be approved. My doctor was very supportive and sorted it with my consultant who apparently he knows quite well as he used to be a gynocologist himself.
A couple of weeks latter II went back to see Proffessor at Christies in early November armed with a very long list of questions as I thought it may be the only chance I would get to find out more information. to cut a long story short he decided he needed more information in particular my pathology and grading of my cancer.
by which time he had had my pathology redone. He also decided to put me forward for BRAC test and to check for hormone sensitivity and redo my CT scan I was not expecting any of this. He also wanted to see me again when he had additional information.
I had my CT scan which did not show any deterioration since beginning of October. The outcome was that my cancer is low grade and hormone receptive! I thinks that right, but basically said it does respond to hormones. This he said explained why I have not responded too well to chemo, as low grade tends not too, In some ways being low grade was good, but does mean chemo will only have limited effects. This was all new information to me although I have had cancer for 18 months at that point
Unfortunately I did not meet the NHS criteria to have braca test done.
I have been told that there is a possibility of a trial for my type of cancer which involves hormone treatment so am hoping this is a different way forward for me in future I am hoping to be treated at Christie.
I will be going for next appointment in March so am hoping trial is through by then and I meet criteria or better sstill dont need treatment yet
I have had my letter to go for my scan a week before I see him, but at the moment don't seem to be having any symptoms.
So ladies dont be afraid of asking for second opinion I wish I had done it along time ago
I attended the target ovarian day in Liverpool last month I really enjoyed it. I have also met five ladies all live within about five miles of each other and all have different experiences with ovarian cancer. We have all met up and intend to meet every month. Its made a huge different having others to met and talk to.
I managed to get away on holiday in December which was nice, we went to Tenerife and had a nice time, unfortunately they had the worst storm for 10 years which lasted two days but we still enjoyed it.
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Sharon xx
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Wiganw
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Wow that's great news Sharon, I often wondered if anyone dared to ask for a second opinion, as I know you can but to hear the fantastic response you got from your consultant must empower so many women- thankfully Iv not had to reason to ask it for myself but sure some women may. It does seem as though Wales has so many more problems than England, can you not have the BRCA test done in Wales?? or is it because there is not enough historical reason for them denying you this? Iv been lucky enough after asking my consultant, to have been referred for it and am having the initial counselling session next week. So glad things looking good for you, Janette x
Sadly there are only 150 funded BRCA tests in Wales for 3M people, so even women who would normally qualify for the test are denied it in Wales due to lack of funding. The general criteria are that a patient has 3 members of their immediate family who have had ovarian, breast or prostrate cancer.
At the recent APPG for Ovarian and Breast Cancer a consultant advised that ideally all women who had serous ovarian cancer should be tested for BRCA mutations, and also talked about women having BRCAness qualities that may make them suitable for particular hormone treatments.
I'm just delighted Sharon has got access to The Christie which is a Centre of Excellence with a range of treatment options. People in Wales have historically been referred to hospitals in England if they wish to access a centre of excellence and there are no specialist facilities in Wales which is generally the case in North Wales for ovarian cancer.
Sadly we don't have a rare enough cancer for Wales not to have any facilities at all because we would all be referred to a better hospital in England. Many women have had to deal with the trauma of being denied Avastin which may have an impact on the quality and length of their lives, and they are also having to deal with funding restrictions that deny women access to other treatments such as Filisgram injections putting them at a 10% risk of infection, hospitalisation and death due to neutropenia.
It's no wonder those of us who can access treatment across the border in England.
There might be other reasons why they are refused G-CSF injections though, recently when I was very seriously ill with neutropenia someone suggested I should be having this... but when I enquired the consultant said that these injections aren't suitable for everyone..I was in hospital at the time and as you know I live in England..(I was too ill to ask why they weren't suitable for me) although he did say in certain circumstances the injections can make you worse.... if only we knew as much as the consultants about what is best for us it would save us a lot of worry about whether we are getting the right treatment or not.
I don't make statements without being able to reference them, so in this case we have evidence of two patients who were refused GCS-F injections in Wales. One was told by The Velindre Hospital in Cardiff that it was their funding policy not to give patients on 2nd and subsequent lines of chemotherapy GCS-F injections. Chemotherapy was delayed by several weeks and the patient was then told she would receive a lowered dose which you can imagine is not ideal if you're trying to maximise your quality and length of life.
Another patient was told in North Wales that GCS-F injections wouldn't be appropriate but having referred herself to a centre of excellence in England she was prescribed them.
The patient who is treated by Cardiff and the Vale Health Board provided the medical argument for GCS-F injections - that she would be at 10% risk of infection, hospitalisation and death without them and she was subsequently given them. They are, after all about £250 for 5 and you would need 5 x 5 cycles at a total cost of £1,250 which is a drop in the ocean compared to the cost of the chemotherapy. The drop in the ocean at £1,250, however, could dramatically improve the quality of those patients' lives and potentially the effectiveness of the treatment. Neither patient was unsuited to the injections but they were victims of funding restrictions of the hospital and/or Wales.
I've subsequently looked up policy for Filisgtam in Scotland and I believe this restriction also applies there so it may be helpful for patients to understand the funding policy and challenge it if necessary.
On a similar vein a patient was told in North Wales that it was not necessary to have BRCA testing. In Wales there are only 150 funded BRCA tests per annum. On referring herself to The Christie she was referred immediately for testing. Not only would this would inform the range of treatments that might be effective for her - but if it were a positive result it may well help her family take steps to avoid developing breast, prostrate and ovarian cancer.
I should also add my personal experience of Avastin. It was simply never mentioned. When I did ask my oncologist about it I was told it wasn't really very good. Her general advice was that it would give additional remission but there was evidence the tumours would return quicker so overall length of life was not improved. This is not medical opinion on Avastin and I began to question the advice when the same oncologist gave diametrically opposed advice to a patient whose care was funded by another health board.
I agree they are not suited to everyone. Of course everyone has to be careful to get to the bottom of clinical and/or funding decisions to ensure they get the best treatment. It does seem to be a point more relevant to Scotland, Wales and Northern Ireland than England so apologies to anyone in England if the thread seems irrelevant.
I wasn't suggesting that you couldn't back your statement up... far from it... I was merely trying to give another point of view...
As you can see I am only speaking from my own experience (and what the consultant told me), unfortunately I am now wondering whether or not I had the wool pulled over my eyes....(and what I was told might not be the case)...
Unfortunately the same happened when I started Caelyx and went down the route of thinking I was only having it because it was the cheaper option,
It turned out to be a wrong assumption and in fact It is one of the more expensive chemotherapies...
But it did set me on an uneccesary track of doubt and mistrust.... from an unproven statement...
Dear Gwyn, it's good you looked into the cost of Caelyx. It's essential that all ideas shared on this forum are taken as personal opinion and if we're worried about something we're lucky to have the nurse-led line at Ovacome to ask along with other avenues of research. The big problem is to know where to turn for some unbiased opinion. It's difficult enough to have an incurable cancer without fighting one's corner as well.
The cynical side of me can see the advantages of denying women Filistram injections in Wales and Scotland. They either miss their chemo or the dose is reduce. A double saving!!!!
Anyway, I didn't mean to highjack this interesting thread. Just delighted Sharon's got fair treatment. xx Annie
• in reply to
Hi Gwyn, I was told at Velindre thst they only were funded for the injections for 1st line chemo and as I am 3rd line wouldn't get them because they were too expensive, not that they wouldn't be suitable, I was less than pleased. After missing yet another chemo 4th in all they decided I could have them.
It's very common for patients on Carbo/gem to need these injections. The strange thing is patients with Lung cancer on same cocktail don't need them as it doesn't affect their bloods, nobody knows why.
I have a friend who is a consultant, he says it is everyone's right to ask for a second opinion, and no consultant takes offence at this, it happens all the time, neither are they (the consultants that is) afraid of coming up with a different treatment, he said it is good when maybe another consultant comes up with a solution that they might have missed.... (so no worries there) we are the ones that are over sensitive not them. Love x G x
So, it was really good to have another point of view. Incidentally, there is also a new trial with Selumetinib which may come to this country soon. It's a MEK inhibitor especially designed for this type of disease. As you say though, your particular version of low grade is likely to respond to hormone treatment so that's brilliant news. Love T xx
Hi, I was diagnosed with PPC GRADE 3c Low Grade in march 2012, I had major debulking surgery but wasn't offered chemo as they said low grade is usually chemo resistant. I have now been using hormonal treatment (tamoxifen) for the last 18 months with no evidence of disease so it looks like it's working...fingers crossed. My cancer was also hormone receptive. Hope this helps. K
My OV is high grade and what they told you exactly what they told me hormone receptive ( SO NOW ON LETROZOLE TO SLOW IT DOWN) also high grade responds better to chemo. better than low grade all swings and roundabouts really lets hope its ages before you need treament to start again.
Love Jenny xxx
My CSN says that even some hormone receptor disease doesn't respond to Tamoxifen sometimes. I have no idea if I'm hormone receptor as I was told I'm not allowed to know between appointments. X
• in reply to
I had no idea if Sandra was hormone receptive and neither did Christies but there is nothing lost and plenty to gain by trying hormone treatment such as Tamoxifen and Letrozole between lines of chemo. So the argument about hormone testing and funding should not stop the effort in trying these drugs. Xx
My understanding from our consultant at The Christie is that you can only have treatment if you have active disease.
Sharon thank you for sharing your experience with us, I am sure that many of the ladies will find it re-assuring and give them the confidence should they be worrying about having a second opinion.
He is also my consultant. He is also my consultant I was referred to The Christie after being diagnosed with PPC by The hospital in Winchester I was living in Hampshire when I became ill.
When I met him he took me through my CT scan and MRI reports from Winchester, gave me full examination then referred me to St Mary's in Manchester for a biopsy. It was a frustrating time but he was right it wasn't PPC but low grade ovarian cancer.
However I have not been offered genetic testing or testing for hormone sensitivity.
Thank you all for your replies and support. I will certainly ask about existing hormone treatment if trial not possible when I go back in march. I will be asking if braca test could benefit and may consider paying for it.
Sx
I Sharon, that was a great result from your 2nd opinion.
I'm also glad you didn't have to deal with the funding issue. I was refused funding by my LHB, I live in Wales. Luckily Velindre funded ir and is trying to be re embursed.
It's interesting about hormonal treatment. Conventional chemo is having no impact on my tumours, I'm now 3rd line for stage 1V.
Something else to ask at clinic.
Hope you have good results of any future treatment
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