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

I think that's wise Lolabo, but I hope you won't need any of it. Best of luck.

Hi Robin, I too am Grade 3 Serous. I was diagnosed  1/7/21, so I have now had my hysterectomy etc  which showed I was Stage 1b. 
I had 6 rounds of Carboplatin and Paclitaxel which finished on 29/12/21 then 3 rounds of Brachytherapy. 
Now awaiting my first 3 monthly consultant appointment to assess how things are. I feel well apart from some muscle weakness in my knees and back due to neuropathy which can be a side effect of the chemo. However due to physiotherapy it is improving and I’m managing to walk a lot more than immediately after my treatment. If I can help in any way please ask.

Kate xx

Hi Kate I am pleased to hear that you are doing a lot better now after your treatment. Do you have a date for your 1st 3 monthly consultant appointment yet? 

I have my operation date now the 8th April but haven't got a pre op date yet but there is plenty of time I suppose.

I just cant wait to get it out and with every little ache or pain I worry that its spreading. I would imagine alot of people with our diagnosis feel the same way. 

A question Kate please if you dont mind? Were you able to ask questions at your pre op about what exactly they are going to do during  your op and what the plan was after after re chemo and radiotherapy?

I want to know if they will do a peritoneal wash when they remove the lymph nodes. I was told that i would have a blast of radiotherapy after my op and only have chemo if they find it has spread. I really want chemo due to it being grade 3 serous. I dont want to waste my CSN time ringing to ask these questions if its something that gets spoken about during my pre op.

Robin xx

Hi Lolabo I was wondering how you are doing after your radiotherophy today.?

Robin xx

Hi Robin

My appointment is next Wednesday and feeling a bit nervous tbh but think that is normal to feel this way.

Your surgery isn’t far away now and yes I go to ask questions at my pre op. I didn’t find out about other treatment until after my surgery as everything’s they remove goes to be tested for staging. Mine was contained within a polyp with no spread, however my consultant opted for the treatment plan I mentioned above. I felt as though I had to throw everything at it as it is a grade 3 cancer. The chemo wasn’t easy but I’m so glad I had it. I felt generally not too bad during it as I had absolutely no nausea. My only real side effect other than hair loss was peripheral neuropathy which was extremely painful. 
If you have questions which are sensitive or relating to you personally I wouldn’t hesitate to contact your CNS, we all have questions. I’ve got a list for my consultant next week lol. 
Hope this helps and if there’s anything else just ask 

Kate xx

Hi Robin, I hope it’s okay to butt in. Whether or not you can ask those sort of questions at your pre-op assessment depends very much on whoever you get doing it. My pre-op for my hysteroscopy was done by a wonderful caring nurse for whom no question was inappropriate and nothing was too much trouble. My pre-op for my hysterectomy was nothing like that and I couldn’t wait to get out, burst into tears as I drove away, and then phoned my CNS to try and calm myself down for the drive home. The nurse rushed me, ignored or brushed over my questions and said I should ask the consultant on the day.  I’d also say that regardless of whether you get a nice nurse or a not nice nurse, the treatment plan post surgery is unlikely to be talked about anyway till after your op and the histology is done. 

I would STRONGLY recommend calling your CNS team ASAP - firstly to ask them to check on your pre-op assessment date (as it’s likely to be in a letter, and the post is taking a long time at the moment) as they will be able to check to see if you’ve yet been allocated a date; secondly to ask them about what will be done at the op and to go over again what was said to you by the consultant. Please please don’t think of your call  as wasting your CNS’s time - they want us to call, it’s what they are there for. If you’re worried about a long phone call, you can ask them for their email address and ask your questions that way. But please do contact them - they will want to hear from you. And they may well be more closely connected to your consultant than the nurse at your pre op. With mine, if they don’t know the answers they email the consultant and then call me back or email me. 

Good luck for next Wednesday I can understand your nervousness bless you, it sounds like you are prepared well with your questions.

Iam sorry that your chemo wasnt easy but totally agree with you wanting to throw everything at it. Thank you for your advice.

I will be thinking of you next Wednesday

Robin xx

Hi MarmiteFan59 Thank you so much for taking the time to reply i truly appreciate it. I think that you and I are similar as far as we want to know as much as possible about our cancer and care plan. My husband says the same as you about not really knowing what the post hysterectomy plan is until the histology results are back. 

I will definitely give the CNS team a call tomorrow as its something that is playing on my mind at the moment.

I have been a lot calmer since getting my operation date and even sleeping better.   

Good tip about asking for an email address.

Hi again Robin, yes we do sound similar! I’ve known from the start that with cancer they tend to only tell you in stages and tell you what they think you can cope with, which may not be the full picture unless the patient specifically asks. And I think they sometimes think the more we know the more we worry so they err on the side of saying less. I kick against that because the less I know, the more I speculate! So I’ve always asked lots of questions. I’ve always owned my health, asking for print outs of blood tests not just accepting the doctor saying “normal”. So I’d say ask away! I find making a list of questions beforehand can help. And definitely ask about the pre-op as the letter could have got delayed or even forgotten - mistakes can happen. Hope you get some answers soon! 

HI Robin27. A pre-op assessment is about your suitability to have an operation and the nurse isn't likely to be fully versed in the procedure you're having so if you've questions definitely call your CNS, they'll be able to answer your questions and certainly won't mind you calling.

A pre-op assessment will usually involve having your height measured and your weight taken. You'll have your blood pressure taken and perhaps an ECG. Bloods may be taken.

Then there'll be lots of questions like have you ever had the following : MRSA, CJD, TB, hepatitis, HIV, Heart attack, Pacemaker fitted, High blood pressure, Stroke, breathlessness, diabetic, seizure, liver problems, abdominal pain.

As I said, the nurse is there to assess your general health and to take on board any pre-existing problems before they operate.

Your CNS will definitely be aware of what treatment plan has been made as she will have been at the MDT meeting.

Big hug, Barb xx