Symptoms and a difficult path to diagnosis:
After a few years of having a “sensitive bladder” and forgetting to drink enough ( I talk a lot in my job ) I was getting Urinary Tract Infections quite often ( UTIs) which looking back have been getting to be more and more restrictive. I put it down to age and menopause. A nurse I saw for a smear put it down to possible incontinence, because I also had a canasten resistant itch in the groin. I knew that wasn’t the issue as you can tell when you leak. And I hadn’t. But in that position you don’t argue the toss.
Then I started having a strong abdominal pain while sitting at my desk which seemed to be a tummy upset and noticed it didn’t really go away and I could feel food travelling internally but on having a bowel movement any pain went. Eventually a month or so later I saw a locum GP who put me down the urgent bowel cancer process. I had a colonoscopy which came back clear “but a bit pink”.
Over some months I had a few stomach migraines, sickness and stomach upsets and went to a nutritionist and started eating only greens and chicken, no sugar dairy or gluten. This helped a lot. She thought the fibroid I’d been diagnosed with a few years before the menopause may be pressing on the bladder which is why I was getting UTIs and having to take cranberry pills and drink a lot.
I delayed going back to the doctor as I didn’t want to bother them and thought it was explained by IBS as discussed with another locum after the colonoscopy. I had a lot of energy still and didn’t really feel “ill”. However things were still not right so I asked for a CA125 blood test. I was told it isn’t used as a screening method by my GP but to come in if I was worried. As the symptoms seemed to settle down I didn’t want to bother him. That was about two years ago.
Things were uncomfortable when driving on uneven surfaces, I couldn’t go for more than 40 minutes without needing to have a wee, and it was usually urgent. Even having gone to decaff coffee and tea! I thought I could feel my organs inside moving about and now I know why.
Another UTI in June this year and again in July and feeling of general abdominal and bladder inflammation made me go to the GP (another locum) yet again The first time they assumed it was thrush. I saw a different more senior GP in our practice who palpated my tummy and said “I was growing a football in there”. That week I had an ultrasound and then a CT scan within days (in early August). My bloods were taken and my CA125 was 80 ( above the norm of 34). I was terrified that it could be cancer. The consultant said she thought it may well be, but probably stage 1. Sleepless nights and despite being a psychotherapist I became by turns a three year old emotionally and someone facing the possibility of an early death with all that entailed, needing to make it easy for others as well as frightening myself with reading horrible and discouraging statistics on Google.
I saw the gynae consultant who explained I had fluid in the uterus and she sent it for a biopsy together with some lining of the womb which she tried to take there and then, with limited success. A multidisciplinary team from Oxford and Swindon discussed my case and agreed surgery locally would be the best way forward then a proper biopsy could be taken post op.
I had a radical hysterectomy, ovaries, tubes, cervix and part of the omentum removed in early October where she told me the “cyst” and womb had wrapped itself to everything and stuck to pelvis, liver and kidneys. All was removed except that sadly the cyst was bigger than they’d thought and it had burst during the operation. It would be stage 2 then we assumed. Stents were inserted to help locate the kidneys.
I contracted Cellulitis post op found by a vigilant nurse on day 3 which cleared up with yet more antibiotics and I had a catheter so I didn’t have to worry about getting to the loo. I did need help untangling the catheter when I had a wash though.
I wasn’t eating or drinking so was on a drip until there was less blood in the urine. Having a bowel movement stopped the feeling of sickness ( a major milestone was being able to pass wind!). The surgeon explained that the bowel has a tantrum if it is handled ( which mine was as so much was stuck to it) and tends to stop working for a while. The anti sickness meds didn’t really work as the gas that was trapped causes the feelings of nausea. We had a minor hooray when the fart was released. I’d been burping fine but “it has to go down as well as up to be healthy” I was told.
I was discharged in 5 days having been unable to eat ( even water made me feel sick). I was feeling vulnerable and unable to get an appointment with the GP I trusted or with the nurse to have the staples removed within the prescribed time. However I could walk slowly and gently round the block to try and get some strength back. Constipation and piles were a problem too which added to the overall feeling of being unwell.
I was glad a nurse had suggested I have a cushion for car journeys so that the incision was protected from the seat belt.
Some staples were removed about day 11 and the rest on day 14. I’d naively assumed someone would come to me as I was feeling fragile but I had to visit them. It reminded me of the no nonsense school PE teacher we had in the 60s who assumed that even a broken arm was just a trifle. Thank God the nurses were so kind and gentle.
I had another UTI I think caused by the kidney stents – antibiotics cleared it but I was SO glad to get them removed a few weeks later, once they were removed all the bladder and kidney pain went too!
Sleepless nights and diagnosis confirmed:
I had been feeling miserable and wondered what it felt like to feel well again. I was petrified that the results of the biopsy would confirm cancer. Many sleepless nights and head in the sand pretending everything was fine.
I was diagnosed at the end of October by a different female doctor standing in for my surgeon with a very brusque bedside manner who informed me that it was cancer. Ovarian, low grade serous and it was stage 3a. Bleak. And such a huge shock.
She said chemo would be the only treatment offered now and that it is chemo resistant, but on the positive side it isn’t as aggressive as some other cancers. (Even more bleak.) ” But then some cancers are SO aggressive”. I felt quite patronised. Apparently though aggressive cancers respond much better to the chemotherapy. So I felt really stuck. I didn’t know how big or small this problem was. I was than told to read the Macmillan books handed to me and go and have some cake in the cafe. I still can’t believe the lack of empathy. In fact she suggested it was really hard for her to have to tell people their results. I wasn’t impressed. In fact I wish I’d been given a feedback form on that occasion instead of the regular ones since (when I have very helpful understanding doctors).
We cried at home in private. And I started clearing clutter. I still am. I don’t know what the future holds but don’t want my husband to be landed with 20 years of stuff which he then has to go through.
A longer term disease:
I met my consultant oncologist a few days later to discuss the chemo process and side effects, and he was more reassuring and suggested we treat it as a longer term disease. I tried to get a feel for time available to me but no-one can say as we are all so different. Not helpful when you are a bit of a control freak. I guess we all want to know. I got the impression they thought I had a few years but no-one can say for sure.
The Ovacome web site has been so useful in giving hope to people like me when we see that some people even diagnosed with stage 4 cancer can survive for years, although others do not.
He also advised that the omentum also had residual microscopic contamination too . That was news. He confirmed though that there are no trials in the area and no money is invested in Low Grade Serous cancer as it is a rarer cancer, so unlikely to attract funding. Support groups have indicated that there are some trials in the US and Spain.
I started 18 weeks of chemo (3 weekly carbo /taxel and weekly taxel only). That has been quite hard, to know you are heading for feeling awful ( sickness, tiredness , hair loss and joint/ muscle aches) on the combined chemos but unsure as to whether they are having any effect. Some people don’t go through it and opt for other drugs if they are suitable. Mine eventually tested positive for being oestrogen receptive and am now on Letrozole, a hormone blocker with its own side effects. Since then talk of immunotherapy has been on the news which offers a ray of hope in the future although it doesn’t seem to be available on the NHS as yet.
I don’t really understand the process yet and always have more questions for the Oncology nurse like whether I’ll get tested for any genetic markers as the MacMillan booklet suggest that Low Grade Serous tumours aren’t genetic, whereas I’ve found on the Ovacome and Low Grade Serous Facebook sites that some people do have these markers with this particular cancers.
I am trying very hard to stay in the now rather than look too far ahead and apart from the chemo I am feeling much better than I have for a few years. I don’t feel old but am realising I’m no spring chicken and my heart goes out to those diagnosed in earlier life.
My CA125 had gone down to 11 a couple of weeks ago which was a great piece of news, to have a known baseline. I am on 3 monthly follow-ups to start with which, if no recurrence will extend to 4 monthly etc. He said there is no “remission” as such for this type of cancer. I’m still learning and reading and trying to find sources of support and good news. There are some especially on “My Ovacome” and the Facebook Group for Low Grade Serous Carcinoma. There are also some very sad stories and my heart goes out to these courageous ladies.
My husband has been wonderful:
My husband has been wonderful, allowing himself to be realistic and emotionally honest and taking over a lot of the domestics while I was recovering from the operation and being positive when I feel really afraid or start catastrophizing which I try to keep a lid on most of the time. I have no idea what I would do without him – I’ve always been so independent and it is strange relying on someone else. Maybe that is one of the lessons of this disease. I notice a lot of people seem to be very self reliant. We are more than our bodies, our emotions and our spirit, we are all of these things.
Chemotherapy side effects:
Generally the side effects of the chemo make me very tired and I do feel the cold a lot more – I missed my hot flushes! But taking a walk every day is important as the energy levels are kept up and I think it helps with aches and pains. My hair thinned a lot and my husband clipped it to 20mm as some people on the support group suggested. Some of them have been through chemo many times over several years.
I had to have injections – administered by my husband- to increase my neutrophils for 5 days in each 3 week cycle which made me feel sick. My immune system wasn’t strong enough to have chemo on one occasion. I didn’t like the taste of food and couldn’t face much but sometimes I felt quite hungry due to the steroids they give as a pre-med.
Now my hot flushes are back and so is the hair.I am getting stronger again and the symptoms have mostly gone.
I am hoping that this rare and chemo resistant type of OC will succumb to the chemo in this case and that it decides not to return. Don’t ever google the survival statistics as they are not encouraging.
Research is really important to the long term survival of woman with this disease. Researchers are working hard to find new treatments, and ways to make existing treatments more effective – but they receive very little governmental support so public donations can make a huge difference. If in the future my cancer returns (I really hope not), research done today and tomorrow might just save my life.
I’m trying not to see it as an adversary but something to try and understand. Self care is a very important part of the treatment I am finding and making time for myself to do the things I want to do, not just to get by but to have a good quality of life, no matter how long it is and to feel I have some control of it is also very important.
I want to to have some control over my end to and for years have been a member of “Dignity in Dying”. Death is such a taboo subject but finally there are some sensitive programmes about palliative care made by Horizon for the BBC. I was reassured to see this. I don’t feel this is a fight, it is what it is and I have a relatively positive attitude but I’m also scared.
I do hope that this is useful information to whoever reads it.
Update November 2019
I now feel physically well and take a hormone blocker letrozole. For me the side effects include joint pain (which improves moving around), insomnia and hot flushes (slightly welcome in colder weather!). I try to walk 10,000 steps a day if possible. It really helps generally. I feel stronger every day.
I’m throwing everything I can at this cancer. I am fundraising to support the efforts of Cure Our Ovarian Cancer and low-grade serous researcher Professor Gourley. Recently I raffled one of my paintings.
Professor Gourley recently completed a clinical trial for a drug called Trametinib. It’s not a silver bullet for our cancer but it’s progress. It is currently available to melanoma patients on the NHS. I am keen for this coverage to be extended to women with my cancer.
I also am interested in complementary therapies*. I have discussed the Joe Tippens fenbendazole and Jame McLelland’s “How to Starve Cancer” protocols with my GP and oncologist. They are doing their best to support me within the confines of the NHS and NICE.
Even as a trained councillor I struggle with the emotional side of this cancer. I try to stop the panic and fear by staying in the present rather than thinking too far ahead. I finally get to see a psychiatrist next week.
I’ve got to stay well as my husband was diagnosed with bowel cancer this week, a year after my diagnosis. This on top of a kitchen flood, so chaos in the house, no washing machine or floor yet after 3 weeks. I’m spinning plates.
I want (and need) to see more research, and better treatments for women with low-grade serous carcinoma – in my lifetime.
(Flowers drawn by Alex a few years prior to her diagnosis)
*Cure Our Ovarian Cancer does not endorse any complimentary therapies discussed. It is important to talk to your oncologist when considering non-prescription treatments.