Writing is my coping mechanism

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Well, I started a blog.  I have so much swirling around this head of mine to cope with, I just decided to write. It's always been my way of coping.  If my blog helps anyone else then that's a bonus: https://younameher.wordpress.com

Endometrial cancer grade 3

  •  LVSI means that some tiny cancer cells were found in the vessels leading from the cancer, it has not spread and has not got to the lymph nodes. It normally means further treatment as the potential is for these cells to travel through the blood/lymphatic system and in some people, if not dealt with via the immune system there is the chance that in time, in some people, set up elsewhere and given time could mean a cancer grows. The cells are so tiny that they can not be seen on scans while they are so small. LVSI stands for lymphatic, vascular invasion. The cancer has not spread but it is thinking about it- was how it was explained to me. 

    P53 and MMR are genetic markers. They are useful for the oncologists to decide which treatment could be most effective. Positive for MMR would mean they would look more closely at a genetic mutation- POLE or Lynch are examples. Sometimes with these they will look at family history. My Mum had bowel cancer which can sometimes have a genetic link to endometrial cancer via Lynch- it didn't in my case- but if it did then it would mean monitoring and possible further testing. P53 wildtype seems to be the non mutated type. They also look at whether it is hormone positive. 

      I am an information person too and it can be frustrating not to be given all the explanations. I remember the first letter I had from the hospital with all the different genetic/pathology results on and it didn't make a lot of sense to me. 

    With check ups the majority of people seem to have these and regularly. Sometimes the very early stage and grades, depending on hospital can be patient led- so no appointments but instructions to contact them with concerns.

    Higher grade 2/3, with or without LVSI, and people who have had chemo or radiotherapy seem to at most hospitals have either 3 monthly/6 monthly checks for the first 2 years after treatment. Some hospitals do scans, mine doesn't unless there are any concerns. After this I have been told it will be patient led referral until 5 years clear. During this time I can at any point go back to the oncologist rather than go via GP. There is a variation between hospitals but this seems to be what happens to most people. 

    The checks are to pick up any recurrences and also to check on recovery from the treatments. The idea is by checking regularly, if it does recur they can act quickly. Because the higher grade is more likely to recur that is why they tend to have the regular checks. 

    Jane

           

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

  •    massive apologies as I misunderstood the LVSI, hoping you read Jane's response before mine. 

  •   with the LVSI, how do they identify it? I had a sentinel lymph node biopsy as my cancer was grade 3 and was told my Lymph nodes were clear, I'm a bit confused. Are you able to shed any light?

  • LVSI are identified when they do the post op pathology and they are able to look more closely- specifically at the blood/lymphatic vessels- it is a sign that the cancer cells are trying to spread either via the blood or lymphatic systems. Think of it that they are sort of seeping out from the main tumour in the womb. The pathologist will look into the vessels and check for cancer cells. Sometimes they also do a pelvic washing so they can check that for stray cancer cells.

    If you had a lymph node biopsy, and it was clear then your cancer has not spread. The scans can pick up swelling/concerns with lymph nodes but can not pick up LVSI. 

    If you had LVSI then it would have been found on your post op pathology. 

    With Grade 3 cancer it means the cancer cells look very different to normal cells and grade 3 can behave more aggressively and can spread more quickly- that is probably why they did the lymph node biopsy. But yours was clear and you didn't have LVSI so it is not something you need to worry about. 

    With early stage grade 3 cancer it is about getting treated quickly and reducing the chances of recurrence. And if there is any signs of recurrence then to act quickly. 

    So if you were stage 1b grade 3 it means that your cancer was contained within your womb, it had grown more than 50% into the muscle of the womb but had not got out- either minutely via LVSI or spread to anywhere else. If the cancer had spread the stage would have gone up. So spread to the cervix would be stage 2. Spread to the lymph nodes (or anywhere else in the pelvis) would be stage 3 and if it had spread out of the pelvis it would be stage 4. Your grade 3 would remain the same whatever stage it was as that is the description of the cell types.

    With grade 3 cancer most people would expect to have some sort of further treatment or more monitoring. But I do not know much about the genetic parts as I did not have any of them. 

    Hope this makes a bit of sense.

    Jane

           

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

  • Hi Jane

    Your explanation of LVSI is clear and makes more sense to me now than it did - so thank you for that.

    I was Stage 1b and grade 1 with LVSI. it seems they take LVSI very seriously.

    I am going through 27 sessions of pelvic radiotherapy and I am wondering why we have so many. Is it because they are covering a wide area? With me they are going up to my Iliac nodes. I'll be asking at my follow up in March.

  • Thank you, I wish it had been explained by the professionals that clearly. 

  • Hi KT89

    LVSI has to be taken seriously as its a sign that the cancer is thinking about spreading- it hasn't yet but it is trying to. Potentially it could in the future and the idea is to stop any stray cells in their tracks- whilst they remain tiny before they cause any trouble,

    With radiotherapy they give a total dose. I think mine was 45 gyn. The dose has to be divided into all the sessions as if you had it all in once or over fewer sessions it could cause serious damage. The idea is that it is directed at specific areas where the cancer is likely to recur and to mop up any stray cells there.

    With somewhere like the pelvis there are other organs and areas that could be damaged if too much was given at once- that's why your bladder needs to be full and rectum empty- so they are as much as possible out of the way. 

    So for me it was aimed at the vaginal cuff and also at the pelvic lymph nodes. This is where a recurrence would mostly start. It sounds the same for you.

    Although the machine goes around the whole pelvis the actual dose is targeted to the specific areas. The idea is to stop any cancer cells multiplying/damaging them so they can't multiply. They try to protect healthy tissues as much as possible but the radiation still has some effects- eg; diarrhoea, skin irritation etc. If you had the total radiotherapy dose at once, potentially those areas would not recover from the radiotherapy. Because a much smaller amount 1/27th of total dose is given, then those tissues have a chance of fully recovering. 

    Hope that makes some sense.

    Jane

           

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

  • Hi Jane

    It makes a lot of sense. Thank you so much. It has not been explained like that to me. It has reassured me and helped me to understand more. 

    Thank you so much.

  • Hello Jane,

    I also wanted to say thank you for explaining it so clearly. 

    I wish I’d been told more, you’ve done a wonderful job of explaining it, thank you. 

     X

  • FormerMember
    FormerMember in reply to B74

    Hi B74,

    Thanks for this. Yes I think you being pre menopausal would also make it more difficult for you to notice symptoms maybe? I never had bleeding, which they said was unusual but I did have a huge amount of watery discharge. I was 54 when diagnosed and had been in menopause since I was 49. LVSI would make sense as it is in my lymph nodes, I still don't understand why mine weren't removed. A question to ask at my next appointment maybe. I do remember my consultant saying something about MMR and it was good whatever she said. I know I probably sound awful not remembering but I was too scared to ask questions as I didn't want to hear the answers. I have calmed down now so want to know as much as I can. Enjoy the rest of your weekend xx