Re: OK...now its me...(advice for newly diagnosed)

[Guest guest]

Hi there!

Has it taken a while to get a gynaecologist's appointment or did

you suspect fibroids before the diagnosis?

<I'm 45 years old....I have no children>

<My recent pelvic ultrasound reveals several uterine fibroids of

varying sizes (3.7 cm - 7.4 cm). My uterus is 17 cm x 8.5 cm x 6.5

cm. (Quite large compared to normal).>

<I don't know what to do next.>

My own approach was to do a lot of reading up as this is my way

of dealing with this kind of thing. It may not suit everyone, but I'm

very glad I did. The advantage is you feel you're doing something

positive about your fears and situation. I was surprised to find it

was a fascinating subject. I also became less embarrassed and

picked up some words and phrasings (not only about fibroid

jargon but also symptom description!) that helped me in

discussions with doctors.

The chances are you'll have a wonderful doctors and a good

experience. Nevertheless, in reading up you do learn that stories

of bad advice from doctors and bad experiences are just as likely

to have happened to someone you know in your local area, as a

stranger in another country. If you're informed you can see

through those situations and not miss it because of a doctor's

professional-seeming manner. This may be especially helpful if

you're not a twenty-something talking about starting a family, but

older and in two minds about a hysterectomy, watch and wait or

other treatments.

The first meeting with the gynaecologist is your best shot at

asking all of those questions that only he can answer. This could

well be the only time you see them before an operation. Divide

your questions into two heaps:

1) Those that only someone who has examined you and is an

expert can answer about you specifically and his/her experience.

Save precious interview time for these ones. For example, how

many myos do YOU YOURSELF typically do? How often would

you say they require a transfusion/ turn into a hysterectomy? Do I

really need a hyst? What are your reservations about the other

treatment I mentioned? I would prefer to keep my uterus (If that is

the case)as I take the attitude that/want .. (However you

feel/whatever you want). You may feel interview nerves but

please follow up the answer to a question with further pressing

on the same subject. Voice fears, doubts and puzzlement with

'Can you clarify that/tell me more.../what are your feelings

about...x treatment/ my partic. case.

2) General questions about fibroids and treatments. You'll be

able to get answers on almost all generalised questions about

fibroids from book and internet research. Nurses can help with

general enquiries about the hospital stay that don't involve

fibroids expertise.

Prepare your questions before the interview and take them with

you written down. Make sure the answers aren't already available

on internet information sites etc.

Don't feel obliged to blurt out a confirmation then and there if you

feel like a rabbit caught in the headlights. Say you would like to

think about it /reflect and digest the news/ discuss it with

friend/partner/family and then come back to them with your

decision. That way you won't feel trapped by something you said

on the spot that you're unhaappy about.

<My internist has recommended a gynecologist, and I will

choose another one for a second opinion.>

I would say, don't contact a second gynae until you've met and

chatted to the first one. The first may be wonderful.

As well as not being too nervous to go against a doctor you

totally disagree with, don't be too hasty in rejecting a gyn. on the

basis of some remark or opinion they voiced. Look into what they

said in case they are right. For example, it would be awful if

someone who really did have cancer dismissed the gyn's words

as scare tactics. Also if you're really not a candidate for treatment

X anyhow, it doesn't matter what they think of it. At the end of the

day you may prefer someone who's not the worlds greatest

talker if they are a great surgeon.

< Are these too big>

Different sizes, types and positions of fibroids suggest and rule

out particular treatment approaches, but some radiologists and

surgeons may have different feelings about what they themelves

can tackle and the state of the art of fibroid removal & shrinkage.

Fibroids can grow the size of a melon. Bear in mind that the

medical expert will be thinking of the best approach for yor case,

hopefully. That's another question you can ask...'Which

treatments do or don't suit my particular case?'

<too many>

Some women have masses of fibroids removed in one surgery.

Fibroid patients usually get more than one although just one is

possible. Even with just a few or one a surgeon may decide to

leave some of it in you and I wished I'd asked about that as you

assume that they'll all be removed with the abdominal myo. This

may be to do with uterus integrity and childbirth and I'd like to

know myself.

<and am I too old to try to preserve the uterus at all?>

Many women would say no, but the hysterectomy is a personal

choice that suits some women and others have less of a choice

because of thier individdual case. ONe advantage of the

hysterectomy is that you know the fibroids won't ever come back.

With the myo there's a chance they might in the near or distant

future. The myomectomy should do the same for you as the

hysterectomy in curing fibroid symptoms. UAE shrinks the

fibroids. There are other treatment options too, and in some

cases doctors talk about symptom control, watching and waitin

and the least invasive methods. If you choose watch and wait

please make sure they are monitored regularly and that you don't

suffer or worry too much from symptoms without some help from

the doctor.

Everyone's symptoms vary from the list of possibles, ranging

from none to most. Looking into this you may find halth hassles

you attributed to something else are actually fibroid-related.

Fibroid diagnosis very rarely turns out to be cancer/pre-cancer

tumours mistaken for fibroids. Fibroid tumours are not cancer,

despite the worrying terminology.

My best advice is to splash out on some book buying (esp.

online)and get print offs from internet surfing and links. Then

you'll know a lot and know what to ask.

Good luck Regal!!