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Surgery and Hydroxy

Hi my MPN family,

I have not been to well lately, feeling full on the smallest amount of food, my stomach being bloated and when I did eat it was like someone blowing through a straw in my stomach and creating lots of bubbles. Well, I phoned my doctor at 1 yesterday and was in her office by 1.30. When she examined me she said my body was full of air that couldn’t get out then blew me away by saying my uterus was so huge she thinks it’s partially blocking my bowel. She said she didn’t like what she was feeling and has ordered blood tests today and an urgent scan at the hospital. I am so scared as I did what I tell people not to do and googled my symptoms. I ticked every box for ovarian cancer. I have had breast cancer which puts me at a higher risk but dear a God, surely I can’t be so unlucky to have a third cancer? What I need to know is what happens with taking my Hydroxy? I was told I was probably looking at a hysterectomy so I was wondering if anybody has had one while on Hydroxy and how long they had to stop it for. Keep fingers crossed for me please. If I am diagnosed with what I think it is I don’t think I have the fight in me anymore. What makes me angry is 4 years ago my old doctor sent me to the gynaecologist at our local hospital. No tests, just an examination and she stupidly told me I should see a sex counsellor! Now I am angry that she didn’t do more. Anyway, if someone can help regarding Hydroxy and surgery I would be so thankful.

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Hi Jilly, oh my goodness, I hope all will be well and that it isn't another cancer, sending you lots of love. With regards to the Hydroxy if you need surgery, you will need to discuss this with your haematologist and he/she will also need to discuss with the team doing any surgery. Maz x

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Hi Jilly,

So sorry to read that you are going through all this. I just want to send lots of love to you and the kindest thoughts all the way from the other side of the world.

Peter x

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Hi Jilly I just want to send you lots of love and strength and hope and prayer that you get a great outcome take care. Love Tracey from Australia xxxxx💕

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Hi Jilly

You are Always so kind and wise when any of us post..

Let the Doctors sort out the schematics of Surgery and Hydroxycarbamide...

You just concentrate on getting better...

Hysterectomies are not what they once were, depends on which route they take..

Thinking of you and wishing the very best outcome...

Good Luck

Mary xx

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Oh Jilly, I will keep fingers, toes, and everything else crossed for you. Whatever route they need to take, your team will sort out any changes to your medicines (my surgery wasn’t super invasive so I stayed on the hydroxy and only came off it when I had radiotherapy) I so hope this gets sorted very quickly. Sending all good wishes.

Anne-Marie xxx

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What did you have radiotherapy for Anne Marie if you don’t mind me asking

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Soz if this is a bit late to send a reply - I’ve got a rare form of lymphoma that’s crashed my ET party the main mass of which presents in my neck and for which I had node excision surgery followed up by the radiotherapy (another ‘can’t be mended’ one but the hope is all will ‘hold’ for some years). A 2 week wait for you will seem like an eternity, but hang on in there - sending all good wishes.

Anne-Marie xxx

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Thanks everyone for the kind words. I had my blood test this morning and I asked what the blood test was. She looked at me like she didn't want to say anything until I asked "Is this for ovarian cancer". She told me this test would show anything so that was my answer. She told me that the doctor has fast tracked me for a scan. The wait is the worse as you will all know. This is going to be a long 2 weeks but I will keep all my friends here up to date xxxx

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Hi dear Jilly, so rotten for you, you have already been through far too much....so hope this won't be what you fear it to be, and so many loving thoughts for you.

Joining with all your MSM friends in wishing you well....realise how extremely tough it is, having to wait two weeks, as well. Sending lots of love and e-hugs and caring, Tinkerbell

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Thanks Tinks, you are always there for my posts xx

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You more than deserve all the support you get.....extra loving thoughts these next two weeks, much love, Tinkerbell

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Sending you lots of love Jilly. It will be a long 2 weeks, I’ll be thinking of you.

Judy xx

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I’m sorry to hear this Jilly. Waiting for answers is the hardest part, good to know that it is being fast tracked though.

Fingers are crossed for you and my thoughts are with you.

Mary xx

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I am so sorry to hear your news, life is so unfair sometimes. Sending you lots of love and good wishes for a positive outcome. Karen x

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So sorry to hear your news Jilly, hopefully in two weeks time the news will be good.

Garry

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So sorry to hear what you are going through. I hope you will be properly taken care of. As you say it’s the waiting that’s the killer and you know the danger of googling but I’m afraid we all do it! Please take care and let us know how you are. I can’t help with regard to the hydroxy but I am sure your Haematogist will advise you xx

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Let’s not think the worst, we will cross each bridge as they come. As you know I am here for you as always, the waiting is so hard I know. We will keep everything crossed. It’s nice to see all the kind words and good wishes on here thanks to everyone. I will try and keep Jill’s chin-up and do everything I can for her. She is the kindest and nicest person you could ever meet. The is no words to express how much she means to me and I will do everything possible to help and support her.

🤞🤞🤞🤞🤞🤞🤞🤞🤞🤞🤞🤞🤞🤞🤞🤞🤞🤞🤞

Stef x.

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Hi Jillydabrat,

Thinking of you and hope all is well xoxo.

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Hi Jilly, prayers that you don’t have cancer. Wow, the doctor from 4 years ago should certainly have been more aggressive to make sure nothing was wrong. Hope all goes well for you! Ann

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Keeping my fingers crossed for you. ‘You must go on. I can’t go on. I’ll go on.’xx

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Hi Jilly, you poor soul. I'm so sorry that you've been feeling so poorly, it must be a real worry for you. I hope that all goes well and that it's not another cancer. Wishing you a speedy recovery and sending much love. Mel x

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So sorry to read this. Hoping it's not what you think, but sending all kinds of love and hope.

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Thanks you so much to everybody who has replied to my post. I have received a call from my GP who gave me the good news that my blood results are clear for ovarian cancer. She has still fast tracked me for CT scan to see why my uterus is so huge but thank God I didn't have what I dreaded. Never Google as it gives you heart attacks. Thanks again everyone xx

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So pleased for you Jilly. I hope the CT scan provides some answers. X

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So pleased for you Jilly. You seem like such a kind and thoughtful person. You don’t deserve all this. Good luck on the next tests.

Thinking of you.

Kate xx

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In the past, the only med d/c due to surgery was aspirin. In fact, major surgery or anything with significant blood loss, inflammation or tissue damage may result in reactive thrombocytosis (the body's normal/healthy response to injury). For those of use with ET or PV, this can be a significant issue. I certainly understand your concern. The doc tried to get my platelets lower last year before I had to have catheter ablation heart surgery. I am in a similar predicament in that I was recently found to have hemorrhagic brain tumor in the occipital lobe. Between two hematologists, two neurologist, and a neurosurgeon - we are working out a plan. I hope you get answers to you questions and a speedy recovery no matter what your plan will be.

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Oh goodness Hunter, I am going through nothing compared to you. Keeping everything crossed for your future health x

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Well I would not call your current situation "nothing." The odd thing for me is that in both situations (atrial tachycardia and the brain tumor) I did not know anything was wrong until each one was caught by chance. I actually felt fine! Anyway, thank you for your kind thoughts. All the best to you as well.

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It’s actually frightening to think what would have happened if they hadn’t caught both of them though. What are the planning for you if you don’t mind sharing. Your blood must have run cold when they said “brain tumour”. X

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It was more than a little shocking and a bit more than a little scary. Because of the PV, another genetic condition - neurofibromatosis type 1, and a family history of dementia - I worked with a neurologist to set up a MRI just as a precaution. I was more concerned about catching dementia if it was starting to be evident. The doc does not routinely do these screenings, but set it up expecting to find nothing. Instead we found a tumor 1.7x3.5x2.9 cm in the right occipital lobe. They have no real idea what kind of tumor this is. The size is concerning as is the fact that it had been internally hemorrhagic and is surrounded by edema. I thought that I was totally asymptomatic, but it turns out there is some sign of impairment in the periphery of my visual field and EEG has some mild abnormality. I had recently d/c the hydroxyurea as I am somewhat HU intolerant. I had also d/c the aspirin I have been on for 30 years + when the MPN expert doc/consultant suggested that with my profile I could be more at risk for bleeding than clotting. Turns out that was a good idea as several weeks later they found the tumor and bleeding in the brain. So for now - no aspirin and no HU - just phlebotomy for treatment for the PV. In terms of treating the tumor - I am electing to have a resection. It will be a craniotomy (open brain procedure) and carries some significant risks, but so does doing nothing. It appears the tumor is more than Grade 1, but less than Grade 4 - but the only way to know is to get tissue. They can't do a biopsy due to the risk of a brain bleed - so it is all or nothing. The PV is a complicating factor since the PV affects the tumor/surgery and the surgery will impact the PV. I am fortunate in that my treatment team at Johns Hopkins Hospital includes; the Director of the Neurosurgery Unit, the Director of the MPN Clinic, and the Director of the Neurofibromatosis Clinic. I think that counts as the "A-Team." I am planning on the surgery no later than mid-June. Looking forward to getting past this hurdle and carrying on. Thanks for the interest - it is great to have a forum like this where we can share experiences and get support. All the best to you - hope you get the answers you need as well.

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Dear Jilly, this is indeed tough, but we are all here for you! I will pray for peace in your soul and that day by day you will get through this with our love. Sleep well, dear. Anag.

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So sorry to read this Jilly. I hope all will be well when you have your CT scan and its some minor thing they can put right. I'm so pleased to read your post yesterday that the blood test showed no ovarian cancer. You are in my thoughts for a good result with the scan . I can empathise with you as my ET was diagnosed last June at the same time as I discovered a breast lump which was cancer too, so it's hard to cope with the news of two cancers at once . Thankfully after lumpectomy and radiotherapy the breast cancer has been dealt with,hopefully, though always has to be watched. Keep on top of things with the support of all MPN ers on here. Fran

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