Scared and confused

Hi

I am english and live in France so my situation is difficult because of language barriers. I do speak french but not technical and definitely not medical french.

I am 3 years post menopausal and started bleeding about 10 weeks ago. Nothing heavy but definitely bleeding. It lasted about 10 days and so I mentioned it to the doc when I had an appointment. I am taking HRT so she referred me to a Gyne.

I have no other symptoms.

I went for the appointment with him and he did a scan and found a 6cm fibroid or as he called it a 'mass' which is a scary word, and he said that it could be cancer. I have never had a scan before so have no idea how long I have had it.

He scheduled me straight away for a full hysterectomy with everything removed in September. Also my uterus is in a very high position which he said was unusual and because of this I have to have a caesarian type cut to remove it. I don't know what letters that is in your prefix thingy. I am having an MRI scan later this week to see what is going on in there.

I am obviously frightened to death and everything I read says to get a second opinion but I just don't have time before the op is scheduled to get another appointment.

Since I went to the gyne I have stopped my HRT completely and have bled again for a couple of days. I have now started to notice that I am uncomfortable in my abdomen and have pains a bit like period pains and realise that I have had these for a while but thought nothing of them. Maybe there is a bit of autosuggestion going on too.

If it is cancer then would it be ok to postpone the op until I had chance to get a second opinion?
The gyne was a bit (well actually a lot) flippant saying that I was post menopausal and so didn't need my uterus/cervix or ovaries any more as they were dried up prunes now, so it was better to get rid of it all and have no risk of cancer of any of it.

Sorry for the long post but I just don't know where to turn. Both me and my husband are in shock about it all.

Hi Weaver Bird,

I'm an anglophone living in France too had a hysterectmy here 3 years ago. Any help I can offer you on the technical language or otherwise I will.

First things first: Take a deep breath and understand you are not alone. Yes, it is scary and of course you are in shock - you have every right to be and what is more it is OK. Try not to make any hasty decisions, give yourself 24 to 48 hours to reflect.

Secondly - it is my experience that they err on the side of caution here when it comes to cancer, they like to cut first and ask questions later. It may well be the best thing for you, or it may not. But just because your Gyne has scheduled your op for September does not mean you have to have it in September. I'm not saying don't, that is your decision and yours alone, I'm just saying you don't have to.

They really are not big on 2nd opinions here, I have found. I often work as a translator for English speakers in medical appointments and only once have I come across one doctor suggesting the patient seek a second opinion because he, a neurologist, was convinced the problem was where the original doctor, an ortho surgeon, had said it was not. I inquired after a second opinion on the need for my hysterectomy and was told that I could of course consult anyone I chose but that all the doctors in my area were under the same departmental umbrella and would agree with the first gyne anyway. I could have gone to a different department, but I decided not to.

If it is cancer, and I hope and pray for you that it is not, then there really is no telling how much time you have to remove it before it spreads - it is so variable. Also, they won't know if it is cancer until the post op biopsy. Is the doctor suggesting any post surgery chemo or Radiotherapy? Or are they going to wait for the biopsy, do you know?

I am assuming the 'mass' is in your uterus and they want to take everything because you are post-menopause. I am not post-menopause but I got the same flippant attitude because my partner is sterilised and we were not planning any more children. It is a big deal to lose any fundamental part of oneself, whether you are using it or not! I abhor the attitude you and I have both encountered - maybe it is a cultural thing here, previously I thought my gyne was just a bit of a cow, she always seemed a cold fish to me.

I can't and won't tell you what to do about the scheduling of the operation or taking the time to get a second opinion. I can only tell you what I did. I decided that as a 37 year old mum of a 7 year old (at the time) any risk of cancer was too great a risk and I consented to the op at the earliest date possible. I kept my ovaries (which at my age both my gyne and surgeon agreed was best) and lost weight (15 kilo in 2 months) to ensure I could have laparascope surgery not open abdomen. By the way, if your gyne and surgeon are not the same person make sure you ask again about laparascope surgery - the surgeon is the one who actually has to do it and may think it is possible. Also, the MRI will tell them more and again, laparascope my be possible. Keep asking about that because the recovery is SO much better from laparascope. I had my daughter by c-section so have gone through both recoveries. Neither is easy, of course, but no open tummy is better.

I will do anything I can to help.

I wish you the best of luck.

Hi Weaver Bird -

I know this is so scary to have something growing inside of you. And it makes it so much harder not being able to talk technically with the doctors. Just because you have a mass does not necessarily mean it is cancer - your doctor just said it could be cancer. Mass is just a term that implies an abnormal growth of some kind. I do not know about your particular situation, but do not get ahead of your diagnosis. Take this this one step at a time. Can you see a gyn onc while you are waiting for your surgery in September?

I had a mass as well that was discovered during my annual exam. I was sent for an ultrasound which diagnosed a very large complex ovarian cyst (12 x 9 x 11 cm) and lots of uterine fibroids. A MRI confirmed the diagnosis. As there was a cancer concern for me as well, I was immediately sent to a gyn onc. Surgery was performed 10 days later. All was tested in the OR, and all was benign.

Know that we are here for you, and understand what you are going through.

Here's another vote for a second opinion, preferably from a gyn/onc if possible. It's also a good idea to get copies of all your paths, scans, etc., so you'll have them for your own reference.

This very well could be a benign process, but I did want to invite you to check out our Cancer Concerns forum as well, if you'd like. There's lots of good information as well as ladies who've been there/done that who will help however they can.

For now, take some deep breaths (it really does help!) and try not to let your mind get too far ahead of things. I had a different type of cancer but do know that even if this isn't something benign, most uterine cancers are slower growing. So, by getting things checked out, it's still quite possible things will be caught at an early stage when they are most treatable.

We'll keep our fingers crossed for the best possible outcome on all fronts. Sending hugs and positive thoughts your way!

I have to post without reading your responses due to time. I had a large fibroid and many of them had total hyertectomy. My doctor viewed my ovaries and said since they looked good she wanted me to keep them. I had a below the bikini ling cut however she sewed it and it is such a great job if I did not have the pouch a bit youd never know the line is like a wrinkle. Women sew better and have littler hands sure that helped me. Most all fibroids are non cancerous not sure that was far of him to tell you. Hopefully your test will help him. If your concerned take the time and find another doctor so you have peace of mind and no regrets

So sorry to hear , i am post op 3 weeks and Yes my situation was sudden and has really been challenging scary emotionally , I often think should I have had second opinion ? But Just for myself, the day to day agony of bleeding and being scared all that being over was worth the knowing , I did a lot of searching Either way I am happy I know and can move forward heal , There are times I feel so scary different and empty and wonder OH GOD what will I be like in a month in years. I Honestly say do everything look everywhere talk to as many people as you can , medically find advocates a friend who's a nurse someone to be near you if you can . Funny story my dearest friend who came through had more veterinary training but by God she knew her stuff and came with me to appointments so doctors couldn't be snarky or just say its age. She Reminded me to ask every question so that when it came time I was confident in my choice . But again it is scary be true to yourself

I am so sorry for what you are going through. My advice for you is to definitely get a second opinion and even a third if you like, especially if you are uncertain of having a hysterectomy.

At 38 years old, I was diagnosed with a large fibroid tumor, enlarging my uterus to that of a 16 week pregnancy. My doctor recommended I have a hysterectomy for fear of the loss of blood I would experience in surgery doing anything else.

I found another doctor for a second opinion. I was so scared, not knowing if it was cancer...it took almost 5 months to find another doctor, confident enough to take me under her care.

I had a myomectomy performed. I was in so much pain recovering from that surgery. The fibroid was so large, it had distended one of my fallopian tubes. She was not even sure I would be able to have more children.

Pathology results showed the fibroid I had was indeed precancerous.

I know our stories are a little different, however I love to share my story in the hope that it can perhaps give others hope during a very scary and uncertain time.

Hold onto your faith always. You are not alone.

Many blessings to you always,
Melissa

	Quote:
Originally Posted by Weaver Bird Hi I am english and live in France so my situation is difficult because of language barriers. I do speak french but not technical and definitely not medical french. I am 3 years post menopausal and started bleeding about 10 weeks ago. Nothing heavy but definitely bleeding. It lasted about 10 days and so I mentioned it to the doc when I had an appointment. I am taking HRT so she referred me to a Gyne. I have no other symptoms. I went for the appointment with him and he did a scan and found a 6cm fibroid or as he called it a 'mass' which is a scary word, and he said that it could be cancer. I have never had a scan before so have no idea how long I have had it. He scheduled me straight away for a full hysterectomy with everything removed in September. Also my uterus is in a very high position which he said was unusual and because of this I have to have a caesarian type cut to remove it. I don't know what letters that is in your prefix thingy. I am having an MRI scan later this week to see what is going on in there. I am obviously frightened to death and everything I read says to get a second opinion but I just don't have time before the op is scheduled to get another appointment. Since I went to the gyne I have stopped my HRT completely and have bled again for a couple of days. I have now started to notice that I am uncomfortable in my abdomen and have pains a bit like period pains and realise that I have had these for a while but thought nothing of them. Maybe there is a bit of autosuggestion going on too. If it is cancer then would it be ok to postpone the op until I had chance to get a second opinion? The gyne was a bit (well actually a lot) flippant saying that I was post menopausal and so didn't need my uterus/cervix or ovaries any more as they were dried up prunes now, so it was better to get rid of it all and have no risk of cancer of any of it. Sorry for the long post but I just don't know where to turn. Both me and my husband are in shock about it all.

Sure Absolutely, yes you can post pone the surgery. You have every right to have a second opinion. This is Your body, YOU are calling the shots. You must fully understand everything. My mom also had this problem. There was no cancer but they did a D & C and the bleeding did stop. I'm praying that everything will be ok my friend. Keep you head up, I will pray for you

Sandyann

Thanks all of you lovely people for your replies and for sharing your stories. It is indeed a scary time. I have been a while replying because I had a problem in logging into the site but I have managed it now.

Yesterday I went for the MRI scan but the results go straight to the gyne so I will have no idea what they showed. However before I went in for the scan I popped into the gyne unit and was able to ask a few questions.

To be honest I really have come to terms with having the op done but just had a few clear up questions to ask but the surgeon was horrible. He was defensive, said he couldn't remember me or what he said which I am sure is understandable as he is a busy man. He said it was simple. I have a problem in that I am postmenopausal and bleeding which is showing there is something wrong. When there is something wrong the answer is to take it out. Simple!!!
There is no other option or treatment.

I said to him I am scared and want to be sure there is nothing else I could do
He said 'No you are not scared, people who are scared come to me to ask me to bring the operation forward because they are scared and want it done sooner. You are not scared you just are not sure and do not want it done. I know about people like you. After the operation is done if something goes wrong then you will blame me because you will say it did not need doing. You will cause trouble. I think you need to get a second opinion and go to someone else'

He was very aggressive and defensive because I think he thought I was challenging his decision but honestly I wasn't I was just trying to clarify some questions I had.

I asked him about the cancer risk and he looked blankly and said he had not mentioned cancer but he did. he said that there was a risk it could be cancer. However he couldn't remember me!!! He said if he had thought it was cancer then he would have had me in for the op much sooner. He definitely mentioned that it could be cancer when I went before.

My husband brought up the fact I was a sportswoman and was worried about the amount of time I will need to recover because he is doing the caesarian entry not vaginal removal and he was really angry then. He said 'You would put your riding career above your health... I don't understand you, maybe I just don't understand women at all'

I was very upset about his attitude. He was rude and arrogant and scathing and now I have no choice but to find another surgeon.

This feels so aweful at such a stressful time. If he had just been polite and factual today I would be just thinking about having the op. Now I have to find another surgeon out of our area which means travelling and when I do have the op it will mean being on my own because I will be away from my home area. Why does it have to be like this?

Wow, sorry to hear he was such an a**hole but it is probably for the best that you saw his true colors before surgery. It is clear he doesn't care about his patients if this is the way he treats someone for asking questions because they are scared and nervous.

Just think that this is a blessing in disguise. What if there was a complication? Do you think you would have gotten quality care from him? He sounds like the type who either wouldn't listen, blame you for the complication, or would just blow you off because the surgery was done. Since he is so defensive it makes you wonder how many complications he has had with his surgeries.

I know this is super stressful but you deserve a doctor who has your best interest at heart.