Uterine Cancer

[stancissimamama]

Any help or advice gratefully received:

Mum, 69 post menopausal, has just been diagnosed with a massively GROWING fibroid- she had been bleeding horrendously for 8 weeks.

Ironically the GP has allowed her to have 15 months' of repeat prescriptions of Vagifem Oestrogen (to deal with a bladder problem) but which has obviously enabled the fibroid to grow horrendously and create a vascular system no-one seems to have seen before in a post menopausal woman.

She has had to fight to see a specialist GYN (who didn't seem concerned about massive bleeding and gave her a injection to stem the flow- which has NOT worked). We've all now fought to get her an MRI scan to establish if the reason why she has such bleeding is uterine cancer.

We had hoped to hear today yes/no cancer or not. Just found out that our consultant has now (having had a chat with the radiologist) PASSED her file to ANOTHER consultant whose name we are NOT allowed to know and we're not even told if he is an oncologist or not....and we have to wait for an appointment 'SOME TIME NEXT WEEK'. Why doesn't our consultant actually have to tell us WHY - his poor secretary has been on the end of tears today (yet again) and he seems to be hiding behind her?

Am I unreasonable to feel so utterly depressed that our consultant (who did an operation on my mum which went SOOOO badly wrong that he actually sewed UP her vagina, and had to do op n2 which has left her scarred for life) has now just DUMPED her file and dismissed us? He had been intending to do a hysterectomy - now he won't tell us why he won't be doing one- or who we have to go to next. The fact that he and the GP have ignored her pleas for help ALL THESE WEEKS and we are now staring at Uterine Cancer is horrendous. Like in the papers.

My mum was a nurse for 30 years.

So sorry. No advice, only sympathy. Of course you are not being unreasonable.

Your poor mum. Both my DM and my DH have cancer, and both took some time to get a proper diagnosis. The waiting is awful.

I hope that you get some answers soon. And hope that someone more helpful comes along with advice.

PS - have you tried PALs at the hospital and maybe MacMillan for advice? Complaining doesn't always get you anywhere, but it means that you articulate everything and that there is a record somewhere of all your concerns...

How do you know it is a fibroid?

don't assume the worst- it may not be cancer.

How have they diagnosed the fibroid? has she had her MRI scan?

Has she had a hysterescopy- camera in uterus which is standard treatment for post meno bleeding?

If she has had that they would be able to tell pretty much straight away if it was a tumour or a fibroid. They would also have taken a biopsy and analysed it.

The treatment from your drs is abyssmal. You ought to complain.

I can't suggest anything else- unless you can find another more supportive gynae who is willing to see her privately and very quickly.

Amelia speaks sense here also. It may not be cancer at all, or they may need the new consultant to order more diagnostics.

I guess it is also possible that they don't want to give you information until they have something more certain to tell you.

Communication does sound very poor however.

The waiting is truly awful.

I am talking from experience.
I am post meno and have an excellent private gynae who has carried out 2 procedures on me for post- meno bleeding.

First I had a scan of the uterus, then he did a biopsy in the surgery, then after eposide 3 he did a hysteroscopy without anaesthetic.

I am on HRT so some bleeding can happen.

He also said that it is fine to use internal hormone creams etc for 2 years without any issues- but after that time he might do a scan to s ee if the uterine lining is okay. so don't assume that the HRT was to blame- your mum may have had a growth before if there is one.

yes, internal HRT can cause fibroids to grow- and it may stimulate the lining so it bleeds but that is unusual.

In the case of cancer, they act pretty qickly, so I would hope that these delays mean it is benign.

it is still disgusting to have to wait- I know I am fortunate to go privately but I get the scans, results and see the gynae all on the same day.

Thank-you for your lovely messages.

She had a histoscopy but they couldn't get the scope to the right place as following the failed surgery to solve bladder problems, quite literally lesions developed and the area seemed to actually join itself together with scar tissue (can't remember the technical term for this) so they tried, but failed - they couldn't do an internal ultrasound for the same reason.

We've had the MRI but no feedback- just told another consultant will deal with us. Actually AG - everyone is assuming it is a massive fibroid - as we have many in the family - but no-one has actually SEEN it yet......so you are right, it could be something else ..interesting also that internal hormones can be used for up to 2 years - will tell mum and I'm sure this will reassure her that she's not the only person who's used them for this long. Thank-you.

RedRosie I'm so sorry for you too -cancer is quite literally in every family I know. My mum in law, dad, step-mum, grandma, uncle and now my mum all have faced, or are facing, Chemo. Thanks for the idea of PALs and McM - will try them definitely for this.

AmeliaGrey- thanks so much - you may be right - that, as they haven't told us outright that it is cancer it may be benign, although my fear is that, as it is Friday, and the New Y Eve weekend- the consultant didn't want to squeeze in an extra appointment at the end of his day to talk to her- especially with potentially bad news.

We had been privately with this consultant for the bladder matter and NHS for this one. As we were getting nowhere we tried to go to another private consultant but the private secretary to the original consultant advised my mum against 'going against him' and said it might slow down treatment overall if we wanted to return to going via the NHS... I was utterly horrified when I heard what they'd told her - this must be bordering on the unethical? ie dissuading a patient from getting a 2nd opinion as they are 'your' private 'customer' and they are about to lose you to another private consultant ......but using the threat that NHS treatment could be delayed if she did so (as he controls this in our area)?

We are going to log every conversation/event and report it all to GMC. The really positive part at the moment is that we won't be getting the original consultant back (privately or NHS) to do any big ops as we've now been moved on - fingers crossed to someone better!

Hope to find out some time next week, in the meantime, thanks again.x

Footle it can be used indefinitely- but you would be sensible to do so under the guidance of a gynae and at least have a scan once in a while.

Stanc if i read this correctly, it sounds as if your mum's vaginal walls ( "sorry" to your mum ) have joined together before they reach the cervix as that is where the scope has to go.

However, there must be some exit or the blood would not be finding a way out. They only need 3mms for the scope so it's odd that they could not find a way in!

If your mum has been left in a terrible mess, internally, that's shocking in itself.

I hope the news is good when it comes.

I'm glad people have come along who know more than me although if you need info on lymphoma (DH), bowel cancer AND lung cancer (DM - unconnected seperate cancers which is a bastard) I'm your woman!.

I too hope it is good news. But in my experience the waiting is often even worse than relatively bad news.

Do let us know how she gets on.

OMG.

Just had a call from my mum. The specialist oncologist nurse who was at the meeting today between the GYN consultant, and consultant radiologist, has just phoned her to say that they had all looked at her MRI scans and had concluded that it was a massive fibroid which needed careful removing, but they couldn't see any evidence of cancer.

Apparently the consultant asked her to call today, as he was aware mum was in knots about it. So I take back my prior vitriol, and thank him immensley for having asked the nurse to call this pm to give her some peace of mind after 3 months' terror. Huge, huge relief, huge. Haven't slept for weeks and I think will do so tonight. My whole family will. Am in tears as I type.

Footle- am not in medical circles myself but is it worth checking the amount of Vagifem you are being prescribed? We found an article on doctors no longer being recommended to prescribe 25mg and only to use 10mg? My mum checked her box of VF and it was the 25mg one that she'd had ......for 15 months, two weeks on, two weeks off. This is what they think has swelled the fibroid and made it suddenly hugely active. So you are right to double check. We are so lucky it has not turned cancerous when it so easily could have done.

Amelia - it is a ring of muscle that has formed into a very tight band near the cervix meaning they couldn't get the device to where it should go. She'd been told to use a specific device regularly to try to 'relax' the scar tissue but it hasn't worked. The original op was a vaginal wall repair and not bladder repair (I get lost in the medical detail...wish I'd followed a medical career now).

Thank-you so much for your support - really appreciated. If ever anyone needs a brilliant fibroids specialist then Nigel Hacking at Spire Southampton (private but does NHS also) is a brilliant consultant radiologist and does fibroid embrolisation all over the world. He did one on me last year when I'd been told to have a hysterectomy and it has worked well. (He was the consultant we wanted to turn to next .....to identify the nature of the fibroid). Happily the answer came through today for us - but his name may help others in the future.

x

Fantastic, fantastic news!

A New Year present. Good luck to you all.

Forgot to say - RedRosie, I wish your DH and DM all the very best - cancer is such a very unfair, and frightening illness for everyone involved. So far we've had bowel, prostate, breast and stomach C in the family with some happier results, and one sadness (due to too late diagnosis).

Please let us know how they are doing. The only comfort is how universal it is- my step mum (stomach C) is amazed by how many people undergo Chemo simultaneously in the room where she has hers, every 3 weeks - and there are three massive rooms full of patients undergoing the same treatment in her local hospital. (Doesn't make it any easier, just feels less alone).

Best x

Thanks. We have developed a good line in gallows humour in our family. My DM and DH are a fantastic support to one another... Very different from the usual SIL - MIL relationship.

I hope your Mum's treatment starts soon and goes well. You sound like a supportive and resiliant family.

Good luck Footle.

Fantastic news- that's great!

I hope she will be okay.

Footle- have you been offered Ovestin cream- it is weaker than Vagifem- VF is oestrodial and Ovestin is oestrodil.

you should also be taking progestins now and then- a gynae would advise- to have a bleed and this will stop any unwanted hyperplasia.

if you want a great gynae in London, PM me!

ok footle