‘Unusual’ fibroid

[Atissue123]

I had a diagnosis last week (from MRI) that I have something ‘atypical’ going on in my womb. They have said it’s most likely an atypical fibroid or an atypical area of adenomyosis (I already know I have this) but as they can’t rule out it being malignant they are offering me a hysterectomy or myomectomy if I want to retain my ability to become pregnant again (unsure on this). It’s in the womb wall so awkward and that means they can’t biopsy it.

Had anyone had this happen to them? If so what happened and did you go for surgery?

They said the cancer risk is low and I can wait 3 months if I want and scan again but the surgeon seemed pretty eager to ‘get in and have a look’.

i should say have typical adenomyosis symptoms (long, heavy, painful periods) but no bleeding between periods. I also have pain quite frequently in the month (on the side this lesion is) but again that seems common with adenomyosis so I wasn’t overly concerned before they scanned me.

I have had a large fibroid embedded in the wall. It wasn’t unusual, just large and causing problems. I had a myomectomy because I wanted to have a baby and couldn’t get pregnant with the fibroid present. It did work and I had dd.

if I needed it done again, I wouldn’t care about fertility, but I would not want a hysterectomy unless it could not be avoided. This is because of a personal history with hRT. I strongly want to preserve my uterus. I’m not a candidate for an in-office endometrial ablation because of the previous myomectomy. what I would ask for is to have the fibroid removed, an endometrial ablation to hopefully end my periods since they have me in surgery anyway, but to preserve my uterus. They might say no, but that is what I would ask for and I would want to know why it wasn’t possible if they declined.

Thank you @Ponderingwindow they haven’t mentioned ablation to me but I certainly can ask about it.

Hi
I had an " unusual " fibroid in my womb wall. In my case, it was a sarcoma. No choice but to have a full abdominal hysterectomy. I'm glad I had it done because all my reproductive organs were covered in cancer cells.

Good luck OP. I'm sure the medics will guide you into making the right choice.

@Enigma52 thank you. Were you ok after the hysterectomy? Did You need further treatment? Very lucky they found it for you of course.

Do you mind me asking, when they suggested hysterectomy, did they give you a choice or did they just say this looks very suspicious so we want to get it out ASAP? They have given me a choice of removal or watch and wait as I guess the MRI can’t really detect what it is. They say they can’t biopsy it due to the location.

i hope you’re doing ok now.

@Atissue123 yes I was fine after hysterectomy, I healed well. No further treatment required for the sarcoma.

I was given no choice but to have a hysterectomy and I wanted it out anyway. I'd started to bleed and it was pressing on my bowel ( somehow) and just causing me problems.

Personally, if it were me, I'd opt for a full hysterectomy. Reproductive organs can go " bad"'easily.

The MRI was a godsend for me because it showed fluid around my lung, which turned out to be secondary breast cancer.

Thank you @Enigma52 i guess in your case when they spotted it they must have been confident it was malignant. I think that’s the issue for me, it seems unlikely but obviously it’s a risk nobody wants to take.

Did they do the MRI that spotted the breast cancer after the hysterectomy then? Maybe that’s a standard procedure if they find that whatever is removed is cancer.

i hope you are recovering well from the breast cancer as well 💐

@Atissue123 Yes, they were very confident mine was malignant. It had suspicious features apparently.

If they have any doubt about your fibroid, they will want to get it out to do a histology. What option would you prefer to take?

No, I had an endometrial biopsy first, due to post menopausal bleeding ( I'm 52 and hadn't had a period since 2018). I requested the MRI and was sure I wanted a hysterectomy because the mass was painful.

It was the MRI which showed the suspicious features and fluid before the hysterectomy. They tested the fluid and found secondary breast cancer in the lung ( I've had breast cancer before and it's returned) This means it can be treated only.

Oh im very sorry to hear that about the breast cancer.

I think my preference would be not to have a hysterectomy if I can avoid it. I’m 42 and overall feel I would prefer not to have one but I will if I need to.

it’s a very grey area I think as they have basically said ‘it’s atypical but probably not malignant but we’d like to look at it’. If they had said it’s highly likely to be malignant I’d have zero doubt about surgery.

Yes, it's definitely a grey area and because they can't biopsy, it makes it more tricky to decide.

Do what you feel is right for you.
Fibroids are rarely malignant.
A three month " watch and wait" approach is a positive i think.

Hi @Atissue123 how are you doing? What did you decide to do?

I'm in the same situation. Been told it is atypical and will need a myectomy most likely. I have a baby so really don't want a major surgery like that. I have an appointment next week to discuss further so I was just looking at all the different options. A biopsy would have been ideal but it doesn't look like that's an option for me either. What did you decide to do?

I also have adeno and endo too and have had previous surgeries.

@JoyApple sorry to hear you’re in the same situation. I asked for a rescan (12 weeks between scans) and they did that and the results are ‘no change or development’ and that my adenomyosis actually appears much improved. I haven’t had a follow up yet but I think I’ve been ‘downgraded’ as they now think it’s likely benign according to scan report. I’m planning to ask the surgeon to ‘have a look’ by doing the laparoscopic surgery and make a decision for me but hoping now I can plan it for September time as it’s less urgent and also that I won’t need a hysterectomy probably just a myomectomy which is my preference. Also on my other scans they couldn’t see my ovary (one of them) and he was worried something had fused to it but on this scan they could and it looks ok. I am happy I asked for a rescan. Ill update again when I go for my follow up.

Yes this happened to me. I had two large fibroids (one half buried in the uterine wall) and an ovarian cyst.

They monitored me for a year or so and then my gyn/obyn said “I don’t like the look of this” (referring to the half buried fibroid) and didn’t give me much choice. So I had a full hysterectomy and removal of ovaries. I was past my child-rearing age though so very different decision.

The operation (not in uk) was done vaginally and all went well.

Prior to the op, I had had dreadful period pain and bowel issues and nausea and vomiting (I literally had a vom bucket by the bed for five years for when I woke nauseous in the night or in the morning) and these symptoms all disappeared after the operation.!

Despite doctors having told me for years that my gastric issues were not related to my gynaecology! They obviously were as the operation gave me my life back. All of my gastric issues disappeared.

Good luck with your decision op 💐

@Atissue123 thanks for sharing that. That's so good to hear! :) 😊 Wishing you all the very best.

Mine is a strange one as the report says they are concerned it grew, but I'm not sure they've factored in that it grew when I was pregnant (which is expected).

Have you heard of the sonata treatment btw? I've been looking at that, it looks promising but not sure it's suitable for what I'm facing tbh. If I need to have something, I really want a non-surgical/cut option.

I don't know if it's helpful but i had a complete abdominal hysterectomy at 40. My 'fibroid' was a very large tumour. I didn't need any further treatment but opted to have everything out. I would say my quality of life is vastly improved now. No HRT for me as it was hormone driven cancer.

@McDonnellsfriend789 thanks for sharing that and sorry to hear you had such a dreadful time.

@EmotionalSupportAutie that's good to hear. May I ask, how did it feel after you had hysterectomy? Did you go straight into menopause? I am considering whether this might be best option? Also did they confirm cancer before or after surgery?

Hi,

Yes straight into menopause as it was radical - I'd say first hot flush hit me about 6 hours in. The benefit is a year on, they are very few and far between.
I have an off license antidepressant for managing hot flushes.
My 'fibroid' was found when they tried to fit a coil to help my periods - they conformed it as cancer at that point and did the staging etc with MRI and everything at that point.

@JoyApple how are you getting on? Have you made any decisions?

@Atissue123 thanks for asking. My appointment is next week. At least I'm being seen quickly. I think I want more proof before jumping into a myectomy, so if it means even a laproscopic enquiry before myectomy, I think I might take that route ... Any advice?

I'm wondering whether there's a way they can use a non surgical way to remove it like sonata... The only challenge may be that they wouldn't be able to take biopsy? With an increasingly active baby to look after too, I can't just jump into a myectomy.

What I don't understand is my fibroid was looking the same just before I fell pregnant and results were discussed 2 months into my pregnancy. The fibroid being atypical wasn't mentioned then although I can see It now in the detailed report. It was advised to repeat the MRI but no one bothered booking one in, and it was only when I chased up an appointment due to nausea and pain that they booked a MRI.

Any update on your end?

@JoyApple I am in limbo still! I have had another letter to say that they think the lesion (probably an atypical fibroid) is 'stable' because it's not showing signs of growth but still behaves a little unusually when shown on MRI under contrast. For this reason they want me to agree to a hysterectomy. This is not really what I want and I am struggling to get a reason why they can't offer myomectomy. I have now booked a second opinion and will see what they have to say. I am pretty certain if i was in my early 30s they wouldn't be pushing me to hysterectomy unless they had a high degree of suspicion it was malignant. it appears they don't anymore as it says 'likely benign' on the radiology report (which I requested) and have said the surgery can wait until September. I don't really know what to do. Similarly to you I have children to look after and am starting a new job in September so of course only want surgery if completely necessary.

@Atissue123 sorry to hear that, it is really difficult!

I had my appointment and they said they will discuss it at MDT on Friday but if they think it is suspicious, it has to be hysterectomy as he said we can't risk going in and taking it out as it may spread, and biopsy not an option even laparoscopy as he said if they take it from one area, it might be in the next part.

Tbh even though I said I'm not sure if I want to have more kids (I'm 37), he was really pushing me to consider hysterectomy, regardless of the outcome of this fibroid tbh. My guess is they'll put me on monitoring for a few months to see what happens, and my gut is saying if not now, at some point they are going to push me for a hysterectomy.

I've been reading about hysterectomy without removing ovaries, and surprisingly women on Mumsnet seem to have a really good experience. When I get my endometriosis pain I sometimes feel like maybe this may be better ... But at the same time, hysterectomy feels a very big move.

Wishing you all the very best! I would love to hear what your second opinion says please.

@JoyApple wishing you the best of luck. They may offer you 'watch and wait' which is what I did and it hasn't changed so is now classed as 'less suspicious, probably benign' but i think they still want me to go for hysterectomy because i am 42 and they think it's easier. I am still reluctant but I am going to discuss again with the consultant. Maybe we have the same Dr pushing hysterectomies?! I guess it's just the guidance and they are following it. If you are unsure if you want more children I would 100% be asking for more info / options / scans. Of course if it's super suspicious you will go ahead but I think you have the right to ask just how suspicious etc etc. I agree that most people's hysterectomy experiences on here sound good. I do know someone who had one though and it was a really hard recovery which personally has put me off. But also it's long term issues I am concerned with. I think it's a risky thing and they don't fully understand the impact on later life, latest studies are mostly pretty negative TBH on long term. Short term after recovery I think it would probably be good. It all needs to be weighed up.

@Atissue123 very true, we really don't know the long term impact of hysterectomy. I think my aunt had one and she was very against it. I haven't asked her why. Sometimes people have ovaries removed too which is a definite no no for me. Can't be dealing with early menopause!

I don't know how they will make a decision on how suspicious it is tbh just from scans alone. He didn't sound too worried so I'm taking that as a plus but at the same time, no idea why they called me in when they haven't even had a MDT meeting. Maybe they have a deadline turnaround time and the meeting fell out of that time ...

I'm at st Mary's in Manchester, just incase we do have the same doctor 😆

@JoyApple I will message you!

@JoyApple - how did you get on? What did the MDT advise? I have my appointment tomorrow!