Following on from my previous post, where I’m now being investigated for Polycythaemia vera (PV) instead of Essential thrombocythemia (ET). I had my ultrasound, and although my spleen was normal size, there was an incidental finding of a 9cm ovarian cyst! I’ve had a 2ww referral to gynae, and my appointment will be this Friday. Talk about thing snowballing! The good news, though, is that the ovarian cancer marker blood test (CA-125) came back normal.
I had my BMB today. It wasn’t nearly as bad as I was afraid it would be, in fact, I hardly felt a thing. Afterwards my leg felt a bit numb, like when you’ve been sitting funny and it’s gone to sleep. It’s a long walk from the department to the car park so my husband pushed me in a wheelchair. The local is wearing off now and it’s a bit sore at the site. Just a two-week or so wait for the results now, but I’m feeling a lot more positive though, knowing that I’m going to get some clarity soon.
Thanks so much for your update @Irene_Louise I am also going through these ‘incidental findings’.
I am so glad that your BMB wasn’t nearly as bad as you had feared.
So just a 2 week or so wait for your results now.
Please do let us know how your gynae appointment goes on Friday.
Be ever so kind to yourself you are going through so much.
Hello again @Irene_Louise, I just wanted to say how glad I am that your BMB went smoothly, and that your spleen is a normal size—two fewer things to worry about now, hopefully.
But how terrifying about that cyst! Thank goodness its cancer markers came back as normal, time for a big sigh of relief I’d say.
How are you feeling since the BMB? Mine also passed pretty painlessly which I put down to the nurse (nicknamed The Mosquito!) being very careful and anaesthetising me well, but I did feel bruised internally for a week or so.
If you’d like, do please let us know how you are when the BMB results come through. Maybe give yourself some time to take in the result after all this waiting and uncertainty about what diagnosis you’ll be living with. Remember that no matter your diagnosis, you’ll find folks here who know what you’re experiencing.
I can also empathise with you and @Erica about incidental findings—I hope none of us find anything else. Too many medical terms to remember on a daily basis, I’m finding!
Thanks for your support, again, Duncan. I’m feeling fine today, still a little tender, but not too bad. My next appointment should be in about 2 weeks, and I’ll certainly let you know how I get on.
Hi Erica
Thanks for your support. As for “incidental findings”, I’m beginning to feel like “There was an old lady who swallowed a fly” – I think I’m up to “she swallowed a cat” now!
I first went to the doctor with a painful hip. He referred me to orthopaedics, and also did various blood tests, including full blood count. This was when the high platelets were noted, and he then referred me to haematology and Myeloproliferative neoplasms (MPN) diagnosed. Then, when my PCV was high, the haematologist ordered the BMB and ultrasound to check for Polycythaemia vera (PV). Then, of course, the ovarian cyst was found and I was referred to gynae.
So, if I hadn’t gone to the doctor about my hip in the first place………
Hi @Irene_Louise I so agree with you.
That was how 2024 was for me.
Be ever so kind to yourself, I find all medical appointments are completely exhausting and another day gone.
Hi Erica
Just to let you know, I had my gynae appointment today. They want to do a few more tests, e.g. CT, then bring me in for a second appointment after a MDT meeting. But it is very likely that I will need a laparotomy in the not-too-distant future. Of course, they will have to liaise with the haematology team. It’s all a bit overwhelming, but next week I start my HI CBT; this appointment couldn’t have come along at a better time.
Oh @Irene_Louise I bet it is a bit overwhelming.
I am glad your gynaecology will be liaising with your haematology, all those ‘ology’s’ and i am also really for MDT meetings.
What great timing for your HI CBT appointment.
Please do let us know how you get on and be really kind to yourself, you have a lot going on.
Hi Erica
Update on my BMB etc.
I finally got the results of my BMB. I’ve only had this verbally, during a telephone appointment with my nurse, as my next consultant appointment is not until 30th June. Apparently it shows JAK2 mutation, which we already knew from my blood test last year, and also shows consistency with Essential thrombocythemia (ET), with no indication of Polycythaemia vera (PV) or MF. The nurse also told me that I am now at the “chronic condition” stage, meaning that I will be having 12 weekly blood tests and telephone appointments, (more frequently only if there are any concerns with my blood results), and annual appointments with the doctor. So that’s the “good” news.
The not so good news, however, is regarding the ovarian cyst, which was found incidentally during an ultrasound to check my spleen. I’ve now had a CT scan, and the results were rather daunting, to say the least. Because of 4 previous laparotomies, there are multiple adhesions, the worst of which is where the sigmoid colon is entirely wrapped around the cyst and firmly attached to it. They have also found that I have a horseshoe kidney. (No, I’d never heard of such a thing either!) So I am now scheduled for major abdominal surgery with input from gynae, colorectal and urology specialists, as well as the necessary liaison with haematology.
So, as far as “the old lady who swallowed a fly”, I think I’m up to the cow by now!
Wow, @Irene_Louise thanks for the update, that sounds like a lot for you to take in.
The Blood Cancer UK support line is there for you if you just want to talk on 0808 2080 888.
Perhaps just be ever so kind to yourself and give yourself time to come to terms with it all.
Please do let us know how you are getting on and really look after yourself
Thanks for your continued support, Erica.
I had a CBT session today, and he was so unbelievably supportive. He really understood that I just needed counselling this session, and will get back on to the proper CBT training when I’ve got my head back on straight. It’s so good to have someone to talk to who isn’t personally involved, as it’s hard for my husband and family too. It IS overwhelming, but I’ll get there in the end. 