Another first post

Hello, this is my first post. I hope you don't mind if I summarise my cancer history, starting with breast cancer (lumpectomy + radiotherapy) in 1985, mastectomy in 2006, and removal of a chest nodule in 2009.

Then the real whammy: diagnosis of ovarian (or peritoneal?) cancer in July 2013. No surgery possible because disease seeded throughout abdomen, but 18 weeks of Carboplatin, followed by approx. a year of "remission". Recurrence in April this year, followed by another 18 weeks of Carboplatin, which I have just finished.

Now chewing my nails while I wait for CT scan next Monday! Feeling tired and glum as I realise there is no cure - just whatever chemotherapy can offer until it no longer works. . . scary. Sorry to start on a downbeat note - I do have better days when I feel much more vibrant and cheerful! Greetings to all fellow travellers!

26 Replies

oldestnewest
  • Hello and welcome to our little gathering ...

    I was wondering why you weren't given Taxol. There are a number of woman on here who had single agent Carboplatin and I don't really understand why some women have one and others both as first line.

    You've really been through it over the years. It's no wonder you feel the way you do sometimes.

    I was also wondering if you've been offered genetic testing for the BRAC gene. It's becoming much more the norm because PARP inhibitors can be effective on growths which develop because of this variation.

    Sending hugs

    Xxx

  • I had an anaphylactic shock to taxol so no dual treatment for me!

  • Thanks for replying! I feel it is going to be a comfort to "speak" to women who are in a similar situation.

    The reason I am on single carboplatin is this: I had an appalling time with chemotherapy for breast cancer, so when I was diagnosed with Ov Ca I said that there was NO WAY I would have chemo. My oncologist was very concerned that I was denying myself the chance of any treatment, so she badgered, cajoled, and generally encouraged me to have the single dose carboplatin on a weekly basis. She cut out the Taxol as it can be quite aggressive. She also recommended a weekly regime, as it is often tolerated much better, with more or less the same outcomes. So I did, and it was all reasonably OK, I got through 18 weeks first time round, and have now just finished another 18 weeks of the same. I know that if the carboplatin has not worked so well this time (CT scan on Monday!) I may well have to have something "nastier" - but if I can still have a weekly rather than a 3-weekly dose, I think I am prepared to give it a go! Funny how life rather than no life. becomes important. Thanks for your concern, Steph xxx

  • Dear Steff

    Welcome to our group. I'm glad you found us as you'll have loads of support and friendship here - though obviously really sad you've had reason to do so.

    I'd imagine you have been offered a BRCA genetic test in addition to your treatment as a faulty BRCA gene can give rise to ovarian, breast and prostate cancer.

    I hope your second treatment of chemotherapy has gone well and the scan shows a good response. How long will it take for you to get the results? I hope they come back very swiftly as waiting can be an awful time.

    It's fine to feel downbeat and sharing feelings does help. As does sharing the good times.

    If it helps I'm over four and a half years since diagnosis and things certainly didn't look hopeful then. I think I've beaten the odds and I live every day as it comes.

    Sending you loads of love xx Annie

  • Thanks Annie, so nice to hear from you. Yes, I have had genetic testing for BRAC - both of my sisters have breast cancer, and sadly my eldest sister died of it a couple of years ago. We are a hopeless family genetically - but, hey, I have been on this cancer merry-go-round for 30years (I am 65 now) and the medics have kept me going up till now. I am v grateful, but still find it scary, especially around CT scan time!

    Steph xxx

  • Of course you are bound to be anxious, did you have a scan half way through treatment and if so how was that for you. At the moment, you are going through pre scan mode which we all suffer from. I am quite a few years down the road, and I have a scan on Thursday so I normally suffer from Scan rage, meaning my humour this week is foul and anything and everything will upset me. I could end up crying while getting the scan. Look you just finished second regime and there is a lot more drugs out there yet. Are you eligible for Avastin for maintenance, I would ask that question when you are going for the result of your scan. I have to wait until 9th Nov to see onc. So last time, I lived in hope and didnt look for result before my appointment and I was a bag of cats so this time, I will be more vocal I think. What you are experiencing is normal and try and do something nice this weekend to take the focus on the dreaded scan, best wishes

  • Hi Suzuki

    I think Avastin is only available for first line in England. I'm not sure where Steff's from. Xx

  • As Wales doesn't have a National Cancer Drugs Fund it should be possible technically to obtain Avastin if it's been successful in a clinical trial. The irony of the drugs situation in Wales is the oncologists use the NCDF list as a rule of thumb to second-guess whether a health board might fund a particular drug. Access to drugs remains a lottery in Wales. According to the Rarer Cancers Foundation patients in Wales are more than seven times less likely to get drugs than patients in England and you can see from the Target Ovarian Cancer Report published this year that women with ovarian cancer are unlikely to be referred to a clinical trial. There seem to be invisible barriers to referring women to trials outside Wales. It's something I hope the new Wales Cancer Research Centre will take on board and address. They have said that anyone in Wales who wants to join a clinical trial should have the right to do so.

    Having said that the staff in Wales are lovely and they will jump through hoops to do what they can for their patients with their limited resources.

  • It's not just Wales. The referral stats are skewed because there are major cancer centres running trials in England but for many women with Ovarian in England, being referred outside of their own cancer network without any prompting, is a pipe dream they probably didn't know they had.

    There are guidelines within networks that patients can be referred to hospitals within their own network but this often doesn't happen either.

    Cancer networks tend to have an unwritten rule that patients are to be locally managed. Heaven forbid that a doctor should say to get on a train though I know this has happened. I've heard doctors at seminars say they don't encourage patients to move because it's difficult for the patient. (Sometimes, that can be true.)

    I can reach a leading trial centre in about the same time I can reach my own but it took all of my energy to find what might be my next move.

    I think that many doctors advise close friends and family of the best treatments available but they don't generally do that for patients. I wonder about the morality of this.

    I'd say that a lot of women in England get standard treatments outside of the CDF so they're in fact, in the same position as women in a Wales with the same disease.

  • How I wish your last statement were true Sue. Women in Wales don't have the same opportunities as some women with ovarian cancer in England.

    Take surgery, for instance, we have only one PET scanner in Wales and that isn't used 100% for diagnostics as it was funded through a research grant nor is it terribly accessible as it is sited in a separate hospital to the cancer centre.

    We have only 650 funded BRCA tests and that number of tests available prevents us conforming to the current NICE guidelines of 10% risk to prompt a genetic test.

    We don't have a super-radical surgeon here in Wales. I'm not saying every centre does in England by any means but at least that is an option. In Wales it is not.

    Take radiotherapy, for instance, I was told by a member of staff at the Wales Cancer Conference 2 weeks ago that two of the radiotherapy machines are so old they keep breaking down and the radiographer has to delay patients' appointments. If patients aren't getting radiotherapy on time the hospital isn't providing the gold standard recommended by NICE.

    We are now the only nation in the UK that doesn't have a cancer awareness campaign which could reduce the numbers of patients being diagnosed with late stage cancer.

    Just a few issues that need addressing in Wales which may well be contributing to Wales' 1 year survival rates for some common cancers being 10 years behind the best, and our 5 year survival rate equivalent to the 1990s. Both statements on survival figures are taken from the 2015 Macmillan Wales Draft Manifesto.

    It's understandable clinicians don't refer to clinical trials outside their area unless the patient raises the issue because how would the clinician know where the patient has contacts/support and can travel.

    I do feel patients who want to get involved in clinical trials have to be proactive and I can tell you from personal experience it can be tough to find your way through the maze - particularly in Wales where there aren't even published guidelines as to how patients can be referred to clinical trials. This is something I've asked the Wales Cancer Research Centre to look into and rectify.

    I'd advise anyone who's interested in clinical trials to look up Target Ovarian Cancer's Trials Database and seek advice from Simon Newman, their Research Manager.

    Annie

  • I don't think it's for the clinician to worry about travel. At least if a patient is aware of a treatment which gives hope, they can decide for themselves whether they'd travel.

    A patient needs to know a lot before they can understand what type of disease they have, it's behaviour and the latest treatment options.

    It's very sad when it's left to a charity to advise women (though thank goodness they do) because the best person to do this is the oncologist who is part of a treatment community and who has access to cutting edge knowledge.

    If a clinician has concerns about patient welfare, then it's for a welfare officer to do the counselling.

    I think it's important for a patient to make informed choices. It's not, in my opinion, up to a doctor to deny a patient hope. Not all patients will take the opportunity whether it's because of distance, possible side effects or their own energy levels, but at least they will have resigned themselves knowing the decision was right for them.

    I won't go into the Wales issue because I can see from what you've said that there are problems but I was just trying to say that standard protocols are very often the norm for a lot of patients I know in England. And sometimes, they're the most effective for individuals at the moment.

  • Thanks so much, and all the best for your scan on Thursday, and the results on 9 Nov. No-one has mentioned Avastin to me. I live in Wales - this might be an issue, but I must say that all the care I have had so far has been wonderful - at the Velindre Cancer Hospital in Cardiff - and my chemo administered locally in Pembrokeshire.

    Steph xxx

  • Crikey, you certainly have to travel a long way for your consultations Steff. I live in Cardiff but I got an address in England to access Avastin where it was available on the National Cancer Drugs Fund. Sue's right, it's not available in England any more for second line. I have heard heard a trial is coming to the Velindre for PARP inhibitors - might know more by the end of the day as I'm going to the Launch of the Wales Cancer Research Centre today.

    The staff at the Velindre are really lovely. Where is your local hospital in Pembrokeshire?

    xx Annie

  • Hi, Annie - I was given the choice to go to Velindre, so decided to go there, as friends told me it was a great place. The lovely Onc I see there liaises with my lovely Onc in Withybush, so I don't have to make the journey too often!

    All the staff in the CDU in Withybush have been wonderful, too, so kind and professional and caring. I feel fortunate to be so well looked after. I hope your experience has been good, too.

    Steph

  • It kinda seems dependent on the post code or where you live from what I can gather,

  • Hi, I'm surprised you weren't offered Taxol too. I did read an NHS report on an email, not quite sure how I got signed up to a staff blog, but it said lots of hospitals are offering Carboplatin as a single agent when the disease is slow growing. It sounds like you have had lots to deal with. I've had the no cure meltdown this week, so know that one, however the ladies on here made me realise I shouldn't write myself off just yet.

    Good luck with your scan

    LA

  • Hello, I was offered Taxol, but turned it down (for reasons given in an earlier reply). But although there seem to be standard treatments, there is a lot of leeway within that to cater for our particular circumstances, reactions, and in my case phobias!!! I am grateful for the advice and patient-centred care I have been given.

    Thank you for your reply, it has been so encouraging to hear from so many people! Steph xxx

  • Welcome!

    I've had breast cancer too and there are a few of us on here who have.

    You don't tell us what your OC was staged at or what type it is or - roughly- how old you are. Not being intrusive, just trying to think of a reason for two lots of carboplatin single agent.

    I had it single agent first line. I hadn't learned then what I know now and didn't think to ask why only it (I was 1c, high grade serous and 58), though I assume it was because they hoped the surgery had got it all.

    Second line I had it with taxol.

    I think quite a number of us find we adapted to the idea of living with a chronic condition and found first recurrence worse than second. But we all have glum days too.

    Waiting for scans is awful. Hang on in there. Let us know how you get on. xxxx

  • Thanks for taking the time to reply. I am now 65, but had my first episode of cancer (breast) when I was 35. So I am hanging in there! I am Stage III c / Stage IV now. I had Carboplatin alone to help me get through the course, and have now finished my second course, tolerated quite well. I guess it'll be Taxol next time. I know we are all different - but how was Taxol for you?

    Greetings! Steph xxx

  • I've just checked what you said about your reasons for not having taxol.

    Having now had 3 different chemo permutations, I too found the breast one by far the worst (I had FEC and remember saying I wasn't sure I'd be able to face another chemo!) and have generally found the OC ones tolerable.

    I was fine with the taxol. But I have started reacting ( not a pleasant experience) to the carboplatin and didn't have my last dose last time around as a result.

    Wishing you well with your scan. xx

  • Hi Steff and welcome to our forum, the one that none of us really wanted to join!

    Boy, you have been through a lot. Cancer sucks! You are entitled to feel down sometimes so don't as pologise about that, you will soon get your positive head back on.

    If II understand correctly you haven't had any surgery for your Ovarian Cancer, I wonder why you were not operated on at end of 1st line chemo when all visible signs of disease were gone. Perhaps you should be asking, I know a number of ladies who have PPC and they have all had surgery, either mid way through treatment or at the end.

    Hopefully your scan will show NED again as nd you can enjoy some more free time.

    Good luck. Ann

  • That's a good question - and one I asked the surgeons. I was told that because my disease has seeded itself microscopically throughout the whole abdominal area there is no way they can tell if they would be removing healthy tissue or diseased tissue. I have never had a discrete tumour as such - nothing like a golf ball (or a melon!)

    Thank you, Ann, for your help and concern. Steph xxx

  • One Reg many years ago described OC like spaghetti it tangles on to your nerves and skin inside your tummy. I never liked spaghetti and certainly wouldnt touch it after this guys description, What he was trying to say its not a lump or tumour just strands. I did originally have a huge swelling. Its a minefield really when you think of it. I can feel I am in for a melt down, have one now and again. As I said, I get very uptight coming up to scan time and results anyhow so it will come out somewhere this week I reckon.

  • Hi Steff. I want to shake your hand, clap you on the back and give you a big hug all at the same time. You first faced this enemy 30 years ago and you fought and won. Now this enemy has appeared in another guise but you will fight this new one too. I was diagnosed with Primary Peritoneal Cancer in 2011 and had a 6 month regime of Carboplatin and Taxol with no surgery. In Aug I was told that I no longer needed to see the Oncology dept and would just meet my gynaecologist every 6 months. Of course I still worry like hell as I wish like all of us that I dont have to wake every morning with the C word on my mind. However as the day goes by I manage to banish it and live in the Now. This site keeps me focused and there are lots of wonderful women who encourage other women even when they are in their own turmoil. I hope my little story gives you hope that there is light at the end of the tunnel. God bless you

    XXX

  • Hi Steff,

    I'm glad you found this forum. All the ladies are so helpful and willing to share their stories and concerns.....and encouragement.

    I had the 18 week regime of carbo and taxol for stage 4a OC. It was tough, but worth it to kill as much of the hideous disease as possible. My last treatment was 8 months ago, and so far so good. I live each day with so much gratitude that I am still here and able to enjoy my husband and family. I think that's the best way to live with this disease......with a positive attitude. You've had a long road, but look......you're still here and fighting! Way to go!

    Prayers to you and your family.

    Judy

  • Thank you, Judy, I appreciate your encouragement. I hope you stay well. A day at a time - with gratitude! - is the best advice, thanks. Steph

You may also like...