LYMPHOVASCULAR SPACE INVASION

I have FIGO Stage 3A cancer.  I’m not sure how it translates to the British system, but it is probably a similar grade to yours.  I started with Chemotherapy.  I had 6  rounds of chemo which finished Feb 28.  I just finished 12 out of 25 external radiation treatments.  My cancer can be aggressive too which is why I reluctantly started the radiation treatments.  Is Chemo on your treatment plan?  I would certainly ask about it given the LVSI.  There are immunotherapy treatments used when cancer comes back which give us hope.

Hi Didi, I too have an aggressive cancer, grade 3a with extensive LVSI. I also had 6 cycles of chemo followed by 25 radios. Unfortunately the treatment hasn't worked for me so I am having immunotherapy. Have had one cycle, seem to be tolerating it quite well so far.How are you getting on? Are you ok withe treatment?

Hi Peggy. I have exactly the same situation, this turns you into a raging hypochondriac doesn't  it ? Little twinges that I would have ignored previously now frighten me.  so annoying !

Hi Peggy

I was stage 1b, grade 3 and substantial LVSI.

I had surgery, chemo and external radiotherapy. 

I had check ups every 12 weeks for 2 years. I am now 2 1/2 years post treatment and doing ok. No recurrence.

I am the same with every ache and pain but I try to look at it that it is keeping me safe in that if I got a symptom or something didn't feel right- then I would get it checked. 

The thing with high grade and LVSI is that the treatments are to mop up any stray cells that are too small to be seen on a scan and to deal with them at the earliest possible stage. The surgery is to remove all visible signs of cancer. The radiotherapy is to mop up any stray cells in the pelvic area and this is where many recurrences can happen. For me the chemo was to mop up anything whole body wise. There can be different treatment protocols for different hospitals. 

If a recurrence happens, I was told it would likely be in the first year or 2 and with each month that passes the chance of recurrence begins to lessen. It could still come back at anytime but she said most happen within that time. 

If a recurrence happens and you are on your check ups and there are no symptoms then it will only have happened within the last 3 months since the last check- so they will get at an early stage. If there are any symptoms then you would contact your hospital and they would likely get you in to be checked/scanned. Again any recurrence would be at an early stage.

If there is a recurrence and it is caught early then it is often treatable and I was told it would depend on where it came back. Surgery may be an option or more chemo. If these were not possible then there would be other options. 

I am sorry to hear you are still struggling with the radiotherapy side effects. They may start to improve with time and it is something to discuss with your CNS at your check up. Diet and medication can make a big difference. Most hospitals have a Late Effects clinic if symptoms continue beyond 6 months. Whilst some people can fortunately find radiotherapy effects soon pass, there are still many who can go on to take longer to heal. I still have effects but they are manageable. 

Hope this helps a bit. If there is anything you want to ask about, please do so. 

Jane

I did not have the LVSI so far myself but Peggy did.  So far I am tolerating the radiation better than I thought I would.  I still have 13 treatments to go.  My doctors are optimistic so I decided to be as well.  A patient at the same hospital where I get radiation had much more spread and is apparently doing well with her immunotherapy.  That gives me hope.

Me too! 

Hi Jane, may I ask if your lymph nodes in the pelvis were clear? My diagnosis was grade 1a but otherwise similar to you. Very best wishes. 

It was just LVSI present.

Thanks Jane - I am puzzled why I haven’t been offered 5 weeks of radiotherapy as others have; just 3 brachytherapy post six sessions of chemo. The answer my oncologist said was that with a biopsy of 31 lymph nodes ( unusual for so many to taken ) which were all clear, it wasn’t required but I understood that the radiotherapy is preventative ? Confusing

. Thank you again for all your very useful guidance. Second chemo tomorrow and hoping I might try to get out a bit sooner with side affects now I know what to expect. Emotional / physical health so connected and I definitely felt better body and mind when I visited a local beauty spot. 

Hi there, I am in a similar situation and the next two years have the potential to be anxiety inducing but I am reassured by Jane’s posts here. I guess worrying doesn’t change a thing and we have to try and enjoy life. My daughter said to me that there could be lots of people walking around who don’t know they have cancer and that we are being very closely monitored and,  as Jane has replied, we will be treated at early stage if it turns up elsewhere .

When treatment ends and I am not immunocompromised, I plan to seek some face to face counselling to help my mind default to the positives if at all possible. I started to feel low after appointments paused after surgery - I think work would have helped but I am retired ! Best wishes