Very fast growing fibroid - frightened

[Ridingladybugs]

Hi everyone

Just posting as have health anxiety and am feeling very scared atm. I had a fibroid discovered last year, and an MRI taken ( as I’m lucky enough to go private). It all looked fine and no treatment decided.

Since then I have had increased heavy bleeding and ended up in hospital. Fibroid has grown significantly.

I’m 45 so consultant said he’s not worried as thinks likely it’s perimenopause with high eostrogrn. I could see he was thrown by it. He did say if I was post menopause he would be concerned. I’m waiting on a further MRI report atm.

I have health anxiety though and I am completely panicking . I made the mistake of googling and can see that uterine sarcomas have a very very poor prognosis ( and mine would have been growing for at least a year). I’m a single parent.

I really need to somehow get a grip whilst I wait for the MRI report ( and am also going to have a blood test). I can feel my heart racing and want to cry when I think of my kids

Thank you Tourmaline.

Yes LDH blood test today. Hopefully get the results and MRI report on Monday. Then I can move forwards in whatever way.

Gosh a failed biopsy and having to wait again must have been awful. Also a bit worried if I need a biopsy as had a hysteroscopy for this fibroid in May and it was pretty horrendous ( annoyingly biopsy of womb lining but not the actual fibroid).

It has however made me really think about a hysterectomy as opposed the new procedure I was considering which just shrinks fibroids ( even if it is just a fibroid if it’s fast growing my worry is it would regrow quickly). Also the thought of being free from the fear of heavy bleeding would be amazing ( obviously aware it is still a major operation).

From personal experience, if you are considering a hysterectomy, have it before the fibroid grows too large to be able to have laparoscopic surgery. My fibroid got to 11 cm, and so I had to have open surgery with a big scar and long recovery time. As other people have said, I believe its quite rare for fibroids to be cancerous, so try not to worry about that. Wishing you all the best.

Had a abdominal hysterectomy 3 days ago for a giant fibroid (size of 8 month pregnancy) and already I'm back on my feet, left ovaries so no menopause. So glad it's gone!

I second that. Get it done ASAP.

I too had a giant fibroid and had a hysterectomy. The fibroid came from no- where and I remember how alarmed my gynecologist was when he first viewed it on ultrasound. I had an mri which confirmed that it was just a fibroid fuellef by hormones.
I was 52 and my life was so insanely enhanced by that operation.

Unfortunately I think it may already be too big for laparoscopic - it’s 8.5 cm and very central. So the consultant at the hospital thought they’d probably have to go back in via my c section scar

Possible that the placement etc means laparoscopic not an option.

However, mine was same size as yours and central over bladder.
They make tiny cuts and essentially place the fibroid in a bag. They then chop it up very small with a macerator and can remove it in the bag, basically fibroid soup.
Sorry if too much info but wanted to make you aware how laparoscopic works with large fibroids.

Every woman has to do her own research and come to her own decision whether she wants to proceed with hysterectomy.

In my case, I wanted the situation to be completely over, did not want to chance the fibroid growing back.
I made the right decision for me. My life was ruled by bleeding, it was awful.
Now, I simply don't even think about it.
I very much enjoyed throwing out the superflow tampons, maternity pads and period pants that I used to wear all at once but still flood through.

Do you have any instinct on the treatment route you would like to follow?

Fingers crossed all goes well with the blood test and hopefully best results will be with u early next week.

Fingers crossed, I had to have a full hysterectomy abdominally, 'up and down' 'across' is meant to be much easier.

Thanks all

@TourmalineGiraffe - mine actually sounds almost identical to yours re placement. It’s central over the bladder. Could I ask - did they biopsy before removal or after?

It’s tricky - I have a lovely gynaecologist, but he is very much of the ‘do as little as possible to women’s bodies’ approach. Which in many ways is great. So his thinking ( although this was pre the recent measurements) try this new procedures ( it’s called SONATA) to shrink - if it grows back then end up back with the other options - but hopefully it wont/ I reach menopause.

I was already however really tired of the level of bleeding ( also use three lots of protection and still not enough!) and - if I’m honest - the last hospital incident has left me quite scared of bleeding ( tmi but partic the clots). This latest uncertainty around whether it could be cancerous pushes me even more into thinking for my own mental sanity maybe I should have a hysterectomy after all.

And thank you all for thinking of me! Just got to get through the weekend now and then hopefully get the results Monday.

I hate the feeling knowing the results are probably with my consultant now so he knows but I don’t

Ah, no, apologies. The two biopsies I referenced were endometrial biopsies, done before hysterectomy.
They did send the fibroid to be tested and I was told all was fine.

It is tricky, especially when your consultant prefers a more gentle approach.

I really feel for you re the bleeding and understand entirely about the clots. It's very difficult.

Thanks tourmaline. I did have the endometrial biopsy and it was fine.

I have a feeling that fibroids can only be biopsies after removal.

If all still looks like it’s just a fibroid will have a chat to my gynae - he is a very good doctor and spends ages explaining and listening. I think his don’t jump to hysterectomy comes from a place of wanting to empower women and give them more options. It maybe just doesn’t work for someone like me 😁.

Thanks again for all your replies - I really do appreciate it.

So a quick update.

My MRI came back with no suspicious features again ( and she is an oncologist radiologist). My blood was slightly raised but not significantly.

However just because of the rate of growth my consultant has to take my case to a multi disciplinary meeting with oncologists. The rate of growth means I do count as suspected cancer.

Really finding this very difficult. It’s like I can’t take any comfort from the MRI findings and now have another week wait.

I did say however that I now want a hysterectomy. I think now this is in my mind I won’t be able to let go of the worry. Even if the multi disciplinary agree looks benign I will still be worried.

Feel so very scared. Just keep thinking of my kids.

My fingers are crossed for you that it's not cancerous. You got through last week... And you'll get through this week! You seem like a very strong lady taking into consideration all you've been through... And I'm sure your in the safest of hands. My thoughts are with you. Just try to take things one step at a time x

I am another one who was in a very similar position to yourself in that there was an element of ambiguity about a large fast growing fibroid. My MRI was not fully conclusive. I had slightly raised platelets (probably due to bleeding/ anaemia) Am now 5 weeks post hysterectomy and have been given the all clear. Some fibroids just grow fast at certain points.
My surgeon told me before the op that she would probably be able to tell during the op and sure enough immediately after she said it looked fine and I could start hrt immediately (not an option if she had been suspicious). It then took a further four weeks before I had written confirmation of biopsies but I was reassured by her.
Sarcomas are incredibly rare. Some internet sites suggest as rare as 1 in 1000 fibroids.
You are in my thoughts. The anxiety is horrible. But try to hold on to the fact that the odds are overwhelmingly in your favour.

I was in a similar situation and did have a form of sarcoma. It was removed and I have been cancer free for almost two years now. Please feel free to message me if you have questions etc.

Thank you for replying. I really do appreciate it.

Glad to hear you got the all clear @RingofBrodgar - and it’s very helpful to know how long the biopsy might take - although that sounds like a long wait. My MRI has come back no suspicious it’s just the rate of growth (5.5 to 9.5 in a year). I am also a bit nervous about the hysterectomy.

@noideawhereiam - so sorry to hear you did have a sarcoma but amazing to hear you are two years clear. I’ve stopped googling now as it was scaring me as there doesn’t seem to be much on sarcomas ( and certainly not much reassuring). Thank you for your kind offer - I may very well DM.

Thinking of you OP. Have you heard anything else? Also suffer from terrible health anxiety so doubly feel for you x

Thank you @Fadeout83.

No I won’t hear anything until Tuesday where I find out what the multi disciplinary team think. Although thinking about it, I’m not sure they can say anything definitive as really can’t unless have a biopsy. So am guessing they will just recommend hysterectomy and biopsy. My best case scenario is they at least say also don’t see anything overtly concerning.

I’m really struggling with the anxiety now ( not helped I think by having had zoladex which is a hormone blocker). Keep going back over consultation and there was also something on my ovary. Which is leading me to negative place. Keep crying when I think about my kids - I think that’s what I find the hardest tbh. Particularly as a single parent. What will happen to them.

Am also struggling a bit with the fact I’ve had two ultrasound and a hysteroscopy in the past 6 months which must have shown the growth but no one picked it up. But need to let that go.

Am considering asking my GP for something for the anxiety/lack of sleep tbh.

Anyway thank you for asking - I do appreciate it.

You poor thing. I just don’t know what to say except that I feel your pain. Health anxiety is debilitating, and I’ve found it to be profoundly more so since having children. My mind goes to all sorts of horrible places.

So here is some advice that I’m not using myself - please don’t google. Nothing good comes of it. People rarely wrote positive stories on the internet. You’re in good hands with a specialist team and all signs point to this being nothing. You’ve decided to go for hysterectomy which will hopefully take care of any future stress. You’re not even close to the horrible case scenario you’re imagining so just breathe. And remember you’re in good hands.

Thank you - my health anxiety also much worse after children!

Its awful isn’t it - particularly as it’s as if the logical part of my brain can see it’s irrational but I can’t control the anxious bit spiralling away

Ah, I did wonder whether you were on zoladex.

I had two months of zoladex and refused anymore. The anxiety was unreal and not sustainable for me.
I know some people are ok on it but equally alot are not.
Def not trying to scare you with this. It may help you to know that zoladex can cause anxiety and use the knowledge to separate yourself from it.
So, if you get very anxious maybe say to yourself it's the zoladex talking again and you don't have to take it too seriously?

I'm assuming they have done this to try and shrink the fibroid?

One good thing is that if you are private and decide to have hysterectomy you won't have too long to wait?

Thanks @TourmalineGiraffe - that’s very helpful.

I actually said to my friend yesterday I don’t think this is ‘just’ my anxiety as it feels different. I’m also coming off Provera at the same time which can also cause anxiety as progesterone drops. Yesterday morning I had a period where I just felt completely hopeless and so anxious I could barely function. I actually put in a request to GP as felt like I needed something. It’s also stopping me sleeping I think?

If the MDT views is as benign I think I can get a hysterectomy with my private consultant at beginning of December. If they feel they can’t say that ( which makes sense to me) my consultant can’t do it but he seemed to think I’d be seen pretty quickly even on NHS. Something to discuss Tuesday!

If you have private health cover would you consider a hysterectomy? Going private you would be able to have one easily unlike if you were NHS.