Consultant Visit...

Hi all

Consultant meeting today and they were positive's and a negative from this meeting but i guess that is to be expected on this journey.

He spent 50 minutes with my partner and I, going into detail of my diagnosis and treatment options.  i now know that i have stage 1b1 Adenocarcinoma, but the MRI was clear - yeah. He drew a diagrams to explain where the cancer is and what the proposed treatment rad hysterectomy would entail.

Now to the negative, he recommended that my ovaries are removed, the standard with this type of tumour.  This was something i really wanted to avoid but seems a trade for being told that i have a clear MRI.

My consultant would use the davinci robot to perform the hys which i need to research but initial findings look like it is a speedier recovery.

And i guess i now need to research HRT and early menopause.

So we did have a celebratory lunch afterwards to celebrate the clear MRI, first milestone and to many more.

He also gave me the option of choosing my operation date, and suggested that we go on a planned family holiday in two weeks.  A luxury of being a private patient.

Onwards...

xx

Hi Pat,

I’m so glad you know what the full picture is now. And what a relief that your MRI was clear. I remember thinking how can is be when I found out the same. Very positive news!

I’d recommend a site, which is mainly US based, called Hyster Sisters. It is so, so helpful for pre and post op check lists. I used it a lot to help with the practical aspects of how to prepare for surgery. A lot of the ladies on there seem to have Da Vinci surgery too, so it could be helpful for you.

Now you know your treatment plan go and enjoy that holiday!

Much love xx

Hi Pat, your diagnosis is exactly the same as mine. I'm also having my ovaries removed so too will be having HRT. That distressed me quite a bit. But now I'm thinking I'd probably rather have them removed if it is recommended as I don't want there to be any chance of going through all this again. It's a lot to take in isn't it. I wish I'd planned a holiday before my treatment. But I'm going to make up for it and have a fab one after treatment and before I return to work. I'll be a few weeks ahead of you treatment wise so do let me know if you have any questions. Have a great holiday.  Take care. Xx 

Hi all, I was diagnosed with adenosqamous 1b1 in May - clear MRI, no vascular space invasion. We went to see the Consultant last week and he said I will need a radical hysterectomy, but I would have been able to have radical trachelectomy if I'd wanted this option. He also said I could keep my ovaries - I'm 36. Just wondered if age plays a part in how they decide this? They've planned surgery for my birthday at the beginning of August. Also, my diagnosis and treatment seem to be spread over a lot longer time than most people's - everyone else seems to be going for surgery within a few weeks of diagnosis, but my surgery will be almost 3 months after the biopsy results came through. They sent me for an MRI before they gave me the diagnosis - which sort of gave the game away - so I think they only booked me in with the consultant on that day as I'd rung up asking questions.

best wishes

xx

Hi Pat - another member of adenocarcinoma 1B1 club here. Glad to hear you had a good experience with your consultant - you were due one.  Although it's a big thing to process, now you know the plan you have something to focus on so hopefully things will seem a tiny bit less scary and out of control now. Smile

I know it's distressing to have your ovaries removed, but at least you'll know for sure that you can't have recurrence there. Quite a few ladies on here have kept their ovaries but still experienced menopausal symptoms so there are no guarantees.

I am not sure of your age, but I am late 40s and was advised to wait and see what my menopause symptoms were like before making a decision about HRT. I actually found that a lot of the menopause symptoms eased off quite quickly (hot flushes and so on) although I am still sorting out a few issues. Anyway, your team will advise you and I'm sure you'll arive at a plan that works for you.

So, onwards and upwards - as someone has said Hystersisters is a great resource, but do bear in mind that most of the women on their forum have had surgery for reasons other than cancer so sometimes their experience is quite different to ours. There is really good advice on recovery there though.

Best of luck and do make the most of the nice weather this weekend. xxx

Ladies

thanks for all your lovely replies xx

Jo - yes I let out an audible gasp of relief when i was told the MRI was clear, and knowing i have a little more control over the treatment plan here on in, i.e dates etc is a little easier.

Tes - Its nice to know that there is someone the same as me and going through surgery and recovery weeks apart.

i'm early 40's and the more i'm processing the information i'm leaning towards ovary removal, one of my friends a cancer research nurse suggested that this is a good idea.

Sun, Tennis and the tour, i have a smile on my face this weekend

xx

 

Hi

I had 1B1 adenocarcinoma and a radical hysterectomy with ovary removal last Sept.  I was 38 at diagnosis and was told my ovary removal was optional although it was preferred.  My understanding was that adenocarcinomas are more prone to spread but I am no expert.

I know a couple of people who have had recurrences on their ovaries and decided I didn't want to take the risk with a young family.  Who knows maybe my ovaries would have been fine and maybe I've had them removed for no reason. But I also know people who kept them and are having issues or going through the menopause anyway.  There's no guarantees and I think each person is different will make the right decision for them.  Personally I couldn't take that chance however slim.

I decided to go straight onto HRT after surgery given my age (my mum didn't go through her menopause until 56) and because I had enough on my plate at the time.  I've had no bad side effects and actually my migraines have improved so a postive side effect!  I wanted to reassure you that the menopause isn't necessarily all bad.... and it's not as scary as it might seem.  Some people hardly have any symptoms and others like me are comfortable taking HRT.  Apart from feeling tired (which could still be the after effect of cancer diagnosis and the op) I don't feel any different to before.

Good luck with your decision!

Best wishes

Kirsty x

 

For the "rarer" type of tumour there seems to be quite a few of us on here, if that means anything at all.

i've had a weekend in the sun to mull over my options and i'm definitely in a better place than i was.

So consultant visit on thursday and this one to discuss my surgery decison and dates.

at the moment it seems a little surreal but i'm sure once this date arrives it will come back to reality.