Hi All another newbie to the group diagnosed with Serous grade 3 last week

Hi Robin, welcome to the group, it’s good to have you here. I hope your pre op comes through soon - I had mine just over two weeks after my staging results, and then my hysterectomy 5 weeks after that. There’s a few people on the group with grade 3 serous and hopefully they will chip in soon, Madesp is one of them, and she’s lovely 

Thank you MarmiteFan59 

I really found your hysterectomy diary very helpful, I know each operation and experience will be different but hearing about yours helped me no end.

My consultant has put me down for either robotic surgery or manual keyhole which ever appointment slot comes first, he said it will be 4 to 6 weeks after me pre op assessment, which i haven't an appointment for as yet.

I am finding the waiting is the worst thing for me, wondering if its spreading. I have only had a CT scan with the dye via a cannula in the arm, not an MRI. It appears to be stage 1 and not spread but obviously he couldn't give me any guarantees that it wont during the waiting time although it's unlikely to.

I'am on the cancellation list so I am very grateful for that. 

There is something that i want to challenge with him based on comments from the group and that is after my full hysterectomy and lymph node removal he said I will have a burst of radiotherapy ( Im not sure exactly what this means in terms of how many or internal or external or both) and only if they find it has spread via the operation results will I get Chemo. Does anyone know if that is the norm for someone with Grade 3 serous please? I would love to hear about your experiences. 

I'am a very positive person and take things in my stride but have realised over the last few weeks that manage best when I know what to expect. Thank you ladies for all your support.

Robin

Hi Robin  glad you came.  I found this group such a good place  to  find  real people going through exactly the same and sharing their experiences have been invaluable to me. Yes you can get lots of info online and sometimes its too much info and that just sends our minds into overdrive. Here you will get the support from lots of lovely ladies.   Marmitefan59 started a diary before her op and this helped me as my op was few days after. Hopefully will help you.

I remember at the pre op the consultant said because it was high grade serous I would have chemotherapy and radiotherapy.  After the op the surgeon said he was pleased with the fact he had a good look round and found nothing abnormal but obviously histology would confirm if it had spread.  I was given option of lymph nodes and some omentum removed and opted to have this as they would definitely know if and how far it had spread. When the surgeon came to see me after  op  he mentioned I would need chemotherapy  too.

I was surprised when histology came back and it was found that everything else was clear cancer found within polyp only and so they questioned at MDT meeting  Ie...did I really need chemo so they opted for patient to choose. After much soul searching and asking these other lovelies on this group I decided I would give chemotherapy a try but am also going to have Brachytherapy-3 sessions as recommended by MDT and  consultant when chemotherapy ends. 

Brachytherapy was recommended and this just treats the vaginal vault from possible recurring. 

Hope this helps  my 1st chemotherapy is TODAY.xxx

Thank you so much for taking the time to reply when you have such a big day ahead of you Madesp. I wish you all the very best for today and to be honest I will be pushing for the same too. 

Take care and I will be thinking of you today.  Robin xx

Hi Robin27

welcome - This is a great forum full of real information and tips to help us all get through this -  I too like to read up and research everything but I’ve stopped doing that about my cancer simply because much of what our friend Google throws up is out of date and I’d rather listen to my medical team and of course the lovely ladies on here. I have been through a whirlwind of appointments since first visiting my GP at the end of Jan - my journey so far is in my profile  - I saw the consultant  a week ago who said to expect op first or second d week of April  and have just got a date for my pre-op on 8th April so looks like it will be the 2nd week !
Consultant said I will be having non invasive hysterectomy and they will be using the green dye to find at the sentinel lymph nodes which will be removed. He said he wouldn’t decide what other treatment I’d need to have until after the surgery - but the cancer is contained in my womb. 
Im a very positive person and just dealing with this one step at a time and getting on with my life - had a lovely weekend with my family and then off for a week exploring the South East coast with husband next week before op. 

If the strength and positivity of the ladies on here could be put together- what a mighty force that would be 

Chrissie 

Hi Christie, glad you had a lovely weekend with your family and I hope you have some good times exploring next week! I live in the New Forest area and would throughly recommend it if your wanderings extend over this way! I’d agree with you in part over the research thing. My CNS said it was fine to research as long as I was careful to use what she’d regard as reliable sites, so I tend to stick to Macmillan and Cancer Reseach UK. But, apart from this forum, what I have also done since the start is limit my research to an hour or so in the evening so I’m not thinking about it all the time. Hope the pre op goes okay and that you get a firm date soon so you can start preparing. I found the suggested packing list on this group quite useful with a few extra additions! Didn’t use any of my sanitary pads at all though as didn’t bleed - donated them instead to a local Ukraine appeal. All the best! 

Thinking of you today Maddie - hope it all goes well with your 1st chemo session x

HI Robin27,

I too have just been diagnosed with serous grade 3. I am due for keyhole surgery on 23rd, then Chemo & Brachytherapy later. I have been given the choice of removal of all pelvic lymph nodes during surgery or radiotherapy to nodes after surgery. Like you I need to know facts and I'm still struggling to make this decision. This is a great supportive & informative site & I have resisted the urge to " Google.". I hope you get your pre op appointment soon, as waiting can be a difficult time. I found reading people's blogs & experiences here helpful, it does remind me that I am not alone in this process and there is a lot of support here both practical and emotional. Xx

Hi Chrissie our journey and lives thus far sound very similar, I have been married 48 years this year and have got 1 daughter and 2 gorgeous granddaughters. I will update my profile to reflect a bit more about me. I saw my GP at the end of January also and its been a whirlwind since then too. At first i was trying to get my hands on as much as possible to read about endometrial cancer but since having my first consultation last Thursday and finding this group at the weekend I have stopped looking and feel much more relaxed and sleeping a little better.

I really feel for you having to travel so far for your treatments that cant be easy. I am so pleased that you now have a pre op date and can go away for a lovely rest with your hubby knowing when you come back you will be in a strong frame of mind and ready for whats ahead. We are in this together 

Robin

Hi toilet

I'am so pleased that you have your op date, how long have you waited for your operation date if you don't mind me asking? Its very interesting the different approaches that the MDT's take, I wasn't given a choice about leaving my lymph nodes in place, even though the cancer is contained within the womb.

I was warned about the side effects like lymphedema after they are removed. I have decided to try and relax more and take each step as it comes rather than trying to get everything straight in my head now for the whole of the process. 

I'am the same as you, very grateful that i have found this wonderful group.