Ovarian cancer newbie needing help please

Dear Trish13

I’m not in a position to give advice…I am responding because I really wanted to say hello, and to send love and best wishes your way…

There are different types of ovarian cancer, as you probably know, aside from what stage it is.  Mine was discovered at stage 2a, and was a high grade serous carcinoma with a huge tumour coming from ovary and Fallopian tube, and starting to involve the surface of the bladder.  I had radical surgery in September 2021, following diagnosis in July.  I have been on chemotherapy since October - Carboplatin and Paclitaxel.  I don’t know what Olaparib is… 

Every time I read of yet another woman who has been repeatedly fobbed off by GP surgeries, ignored and side lined, my blood boils.  It is so monstrous that this repeatedly happens; if they at least did a simple, inexpensive blood test this could be avoided.  I sometimes wonder if some of them actually care about their patients.

In my own case, I am deeply grateful that a telephone consultation with the GP resulted in immediate blood and urine tests, and following extremely high CA125, an immediate referral to the local hospital.  From there, I was fortunate to be referred to the Royal Marsden, and however unpleasant the chemotherapy is (and it is absolutely vile) I have been given speedy and efficient treatment, and am hoping very much that I will be cured, though it’s not a definite thing.

I am so sorry that not only are you in this frightening situation, but have been served so badly by your GP.  There is hope…it seems that more and more patients with ovarian cancer, including quite advanced cancer, are actually surviving longer and longer.  I believe follow up care involves regular blood tests, and CT scans where indicated.  As you know, cancer cells can be quietly lurking, though surgery has presumably removed your ovaries and many other organs, but hopefully the chemo mops them up.  

I hope you get some good replies; there are some really lovely women on this forum ready to share their experiences and spread a bit of care.  I hope you have care and support at home, from family and/or friends.  

I do wish you a thorough recovery, and strength to go through any further treatment and tests.  I hope your CT scan is beautifully clear!

Love and prayers to you, and best of health in the future.

Xxx

SueB.

Hi Sue,

Thank you Sue for taking the time and effort to respond.

Yes I also have high grade serous carcinoma.

It is so good to hear that yours has been caught relatively early and that you GP was on the ball. I hope and pray your cancer is completely cured. My GP even gave me my diagnosis of cancer over the phone as he said it didn’t warrant a face to face consultation!

I also had carboplatin and paclitaxel chemotherapy, -not nice but hopefully yours is nearly finished now - keep positive.

Although I do not carry the BRCA gene, my tumour HRD was BRCA pos (and I presume as my cancer is advanced and not curable) I have been offered the cancer maintenance medication called Olaparib.

I wish you the strength and positivity to get through the remainder of you chemotherapy.

Trish. X

Thank you Trish

Words fail me re your GP…what a piece of work.  It makes me swear, but I won’t put that in print.  

I am so sorry that your cancer is apparently not curable, this must be so devastating.  

I am hoping mine is; there is a very good chance, though I know this type of cancer can recur in other sites.  But I try not to think about that, and just count my blessings I was actually caught in reasonable time.  

Once again, sending very best wishes, and hoping your maintenance treatment goes well, and is bearable.  

Sue 

xxx

Hi Trish

hope you are doing ok .  I too am 3C and was lucky? enough to get a reasonably quick diagnosis in 2020, and did my treatment- 8 chemos and surgery during the pandemic without any disruption.  I was  NED in November 2020, and put on a 2 year Olaparib maintenance course.  The worst bit is the aching joints- mainly knees - not great when you work in John Lewis on your feet for 2 days a week!   I do monthly blood tests -my CA125 marker was 8 last week , lowest ever ! Normal is anything under 35! I have 3 monthly scans, last one was 30 December and all was well my hospital in Chelmsford have been wonderful given the circumstances we are sadly in.  There is a great Facebook group called ‘parp inhibitors’ which has ladies from all over the world who contribute with help and advice- worth a look 

i hope your treatments continue well , let us know how

you are getting on

Take care

xxx

Hi Janet,

Thank you so much for your reply, I will take a look at the  Facebook group you mention.

I am pleased to hear that you are doing so well and hope that you will continue to do well for a very long time. (Hope the knees improve!)

take care

Trish. X

hello Trish, just wanted to say hello as we have similar story! Im a midwife and have had 3b ovarian cancer, had radical hysterectomy and appendectomy in Nov, I too was in theatre about 8 hrs, I also lost part of my bowel and now have an ileostomy that they now think isn't worth reversal.  they said I wouldn't need chemo but have just started on letrozole.

I am due a CT scan again in 6 months, and I think they said again 6 moths after that.

I cant give you any support with olaparib sorry.  I have been pricing up insurance though.  I've looked at staysure.  quotes I have been getting are about £600-700.