Reassurance

Well done beepeep on getting this far and also for posting this. Do you have a date yet for your radio? Mine was predicted grade 1/stage 1, revised to grade 1/stage 2 post histology and I had radio and brachy (2022). I’d describe myself as anxious but pragmatic - people described me as “positive”, “brave”, but I wasn’t, I didn’t have the energy for that, I just focussed on getting done what needed to be done and that’s pragmatism! 

Hello Beepeep

Thank you for sharing your story so far. 

I hope that you are recovering well from your hysterectomy and wish you the best for your radiotherapy. 

It is good that you do not need to have chemotherapy and I know that it is a treatment that many people worry about.

I also was a grade 3 and it is true that some grade 3 do not need chemo. I remember my consultant saying that there were different types of grade 3 cancer and some respond better to chemo than others. Some also have genetic features that mean that other treatments would be more suitable. Stage is also important and also whether or not there is any lymphatic or vascular invasion. There are also differences in protocol in different areas. Most grade 3 does need some sort of follow up though and sometimes this can be just brachytherapy and sometimes external radiotherapy. 

I was stage 1 grade 3 and had chemo and then the external beam radiotherapy. 

The meditation app sounds good and the bird song. 

Once again, thank you for sharing your experiences so far- it does help ladies who are just going through the diagnosis process and are worried about what lays ahead. I wish you well for your radiotherapy.

If there is anything you want to ask about the radiotherapy please go ahead. 

Jane

Hi Beepeep

I'ma almost 62 not sporty recently and steps not as many as you ..but that's a work in progress ...I am around 4 weeks behind you now just had my op, I was provisionally Stage 1a Grade 3 genetic possibly Lynch syndrome .

Great news no chemo for you it's strange some Grade 3 do some don't, I have gone with the I will be having everything that is needed ....and then if it's not it's a pleasant surprise .

Good luck with the Radiotherapy let me know how you get on.

L.

Hi, just wanted to add that I always fall asleep to the sounds of the sea music disc, which is very calming....

Best wishes.

Good morning Marmitefan, no date as yet and I hope that you are feeling fine now? I am sure you were as your friends described but we all just cope in whatever way we can. It all definitely takes an emotional toll and my (single) friend’s way of dealing with it was to arrange equity release on her house and go on about six holidays a year! 

Hi there Linda, I am in the same boat with exact same results and felt the same as you about accepting all possible treatments . Found out about the possibility of lynch syndrome with my first oncology appointment yesterday and so need to do some research before genetic testing as to the benefits of further knowledge . 

If you have children I would definitely get tested for lynch syndrome. I Have it and there is a 50% that you can pass it onto them. I have 3 daughters who have all been tested - we are awaiting the results for 2 of them but my youngest daughter has also got lynch syndrome. This means she is at an increased risk of womb and bowel cancer. She is already on the waiting list for a hysterectomy but this means she will be bumped up the list as she is at increased risk and she will have a colonoscapy every 2 years. For men they are at an increased risk for prostrate and bowel cancer. This has been a very traumatic time for our family but my girls are glad that if there is an increased risk they will be monitored closely so I urge anyone who has family to have this test if offered.

Hi Ronny

I hope you don't mind me asking but how did you move forward with testing for Lynch. Did you have to wait for the Genealogy meeting to enable your children to be tested? I have MHS-6 so the surgeon said its Lynch and has referred me my appointment is booked for July , my sons are 32 and 35 so I want to get the ball rolling but I also have a niece in her early 40s her mother my sister died of ovarian cancer their was no testing then so she has no idea so I will need to tell her as well but obviously only have my biopsy feedback atm that mentions anything ?

Hi Linda and Ronny

im also waiting to hear from genetics as they are very sure I have Lynch syndrome. I had bloods taken 4 weeks ago snd I’m still waiting to hear from genetics. I don’t have children but I have a brother who will be tested and then he has two children. 

Hi Runner and Ronny 

I haven't got as far as bloods ! its frustrating to know that I may have passed this on but also my sister could have passed it on .. patience isn't my strong point  

Linda