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Womb (uterus) cancer

A place for people affected by womb cancer (also known as uterus or endometrial cancer) to support one another, ask questions, and share their experiences.

Asking for a second opinion ?

McLeod
Posted by

Hello All,

I wanted to share my experience in the hope that it might encourage anyone who feels that they would like a second opinion go ahead and ask.

I have an earlier post about my fairly recent diagnosis but forgive me for just recapping.  At my local hospital In the middle of March after investigations I was diagnosed with Womb Cancer, and I was being referred to the larger City Hospital. A MRI and CT scan followed very quickly and by the first week in April I had my first appointment with my consultant who confirmed that I had stage 1B Grade 2 Endometrial cancer.  We talked about the previous surgeries that I had in the past which went back quite a number of years.  The main ones being an Ileostomy, Gall Bladder  and an op to drain a large Ovarian Cyst.Although a Hysterectomy was thought the best option the situation with the corona virus was going to delay this and after an unsuccessful attempt to insert a Merena Coil I was prescribed Megace with the hope that an op could be offered in three months.  My surgical notes were also to be requested from my local hospital.

I had a telephone appointment at the end of April with my consultant who had received the surgical notes and had discussed my case at MDT, unfortunately it was felt that I could no longer be offered safe surgery.  I was devastated,  but did ask if it was possible to have a second opinion.  There was no hesitation on the part of my consultant who said it was always a good idea, and would send my notes to a colleague the same day, in the meantime I was switched to Letrozole hormone drug.  Two very anxious weeks followed, I requested copies of my Health Records (not good bedtime reading) and I took them along with me for the second opinion consultation.  
We talked about the difficulties that could be involved in a Hysterectomy due to the previous surgeries that I had had and I had an examination.

I can,t explain the relief that I felt when I was offered surgery for a Hysterectomy, I am so thankful to be given the chance, and although The difficulties were not glossed over, I feel this is right for me.  Today I had a call to say that it was confirmed that my surgery could be scheduled for June.

That’s been my experience so far.  I know that I am just at the start of my treatment but I’ve found  online community invaluable, just knowing that people know from firsthand experience how you may be feeling is something that  would be hard to find on a site that you can trust.  Although I haven’t posted very much I do often look in, and I think that’s OK too.

I hope you are all keeping safe and well

Best wishes to you all

MissMac

McLeod
Little lamb
Posted by

Hi McLeod and welcome again to the womb group. Thank you for sharing your experience with us and I am pleased to hear you have now been offered a window of opportunity for your surgery. You certainly seem to have been through the mill with your previous surgeries and the current situation with the covid 19 and delays to treatment is very worrying to those who are waiting although completely understandable given the risks. I admire you for your courage in asking for a second opinion as sometimes this would not occur to patients having been overwhelmed by the initial diagnosis, the shock at having to absorb what they have been told, the anxious waiting for further procedures, what do you tell the family and how exactly do you break it to them gently to avoid complete overload and panic which is what the majority of us go through ourselves at the time. Then there is the realisation When the facts sink in, the down days and depression that sometimes follows and of course the never ending fear of "what if it comes back given the fact I didn't know I had it in the first place let alone how it got there?" . So many worries and of course we do have a natural tendency to believe what we are told and not question it unduly. So normally the journey goes tests,scans,diagnosis,treatment sometimes surgery, findings, chemo and/or radiation/bracytherapy or both depending on grade and staying but ,as in your case, and this is why I think your post is valuable, if you are denied surgery due to previous operations, obesity or high risk situations not withstanding the covid crisis currently you are able to seek a second opinion to see if the advice is the same. In my time in this group I have only seen a second opinion sought in one of two cases and that was a long time ago. It is always good to highlight this now and again to remind us that we have the right to do this should we need to. In the meantime, thank you again and I wish you well with your operation and future recovery. You are always welcome to post here, ask questions. We have tips on what to take into hospital, preparation prior to surgery, post operative recovery, answers to all those little niggly problems(nothing too embarrassing to ask as we've all been through it!) and a vast range of experiences and ages and loads of support, virtual hugs and love to go round. You will make many friends so please keep us posted as to your progress. God bless you. Love lamb.xx

McLeod
Posted by

Hello Lamb, 

Thank you so much for you kind words, after posting I began to have second thoughts as it sounded so much like me, me, me. but I’m glad I got it down. After diagnosis I remember thinking what should I tell my family, asking the nurse what should I tell my family, as it was at the time Corona virus had raised its head and just before lock down it just seemed too much to put on them.  In the end I felt it was best to be honest from the start. I have fantastic support from hubby, our family and our long distance extended family,  I am very lucky to have so many people that care. 
It was through the Macmillan site section Talking to your health care team (I had read through it just trying to inform myself) that I stumbled out my request for the second opinion.  I thinking my way of coping is to try and be as informed as I can, and there is so much reliable information here.  

I would really appreciate any tips on how us women prepare for hospital admission, pre and post surgery all suggestions welcome.

At the minute I’m keeping busy but trying to have rest periods to relax, and focusing on healthy eating too. Any tips on this would be very welcome as well.

Thanks for listening and I hope all is well with you and yours. 

MissMac

McLeod
Little lamb
Posted by

Hi again McLeod. Sorry for the delay in getting back to you. Yes, preparation. Start getting your house in order because you will be unable to do any housework for quite a few weeks so any heavy jobs,window cleaning,shopping do now. Cook some batch meals to freeze or get some easy ready meals in so you have something to hand to eat as cooking won't be on the cards for a bit either. Arrange your room so everything you need is within easy reach and at worktop/waist height. I put a plate,cup and saucer out so I could make a cup of coffee easily and took a flask upstairs in the early days to prevent me going up and down when my husband wasn't around.  Train your other half if needs be...mine was excellent at setting technology up but unable to use a washing machine or iron for some reason..still he knows now! Sort out some loose clothes a size or so bigger and invest in some big pants and slip.on shoes. Hospital bag..Take a small pillow/cushion to rest against your tummy when coughing, some snacks and drinks,some lozenges for a dry throat,ear plugs as hospitals are noisy and one of those eye shields to make it dark so you can sleep. Phone and charger, book or magazines , windeze tablets and some dried fruits ie prunes as wind and constipation are common due to the drugs and digging around and it's sooo painful! Pen and paper as mind will be like a sieve. I'm sure the other girls will be along with their suggestions soon as well and more tips. Take care love lamb.xx

McLeod
Posted by

Hi thanks Lamb for all the great suggestions, will take them onboard.  I hadn’t thought of including a cushion or eye mask in my extensive list but have put in my case now.  

Thanks again x

MissMac

McLeod