Pre radiotherapy consult

Hi Sherwood Lady,  I was the same as you with LVSI and some cancer found in the blood vessels of the womb and I therefore had radiotherapy and brachytherapy as a precaution and to lower the risk of recurrence.  But the thing is the blood vessels had already been removed and so will those of yours have been - otherwise how would they have checked? All of us are left with background anxiety about whether any sneaky cells escaped and are trying to cause havoc, however unlikely that is.  

I think we all let our fears take over and run riot from time to time, and its quite natural after the shock of diagnosis and then surgery.  I found it helped to remember that the cancer had been contained within the womb.  I really freaked out when i heard i needed radiotherapy too and in fact my gynae-surgeon rang me one night to reassure me.  Sometimes we just need things explained.

This is one to talk over with your CNS nurse.  She will have knowledge of your staging and grading and will be able to reassure you and she'll be able to refer to your surgeon if needs be.  Dont feel your worries are too minor to bother her with - because anything which is worrying you about your case is her concern and a huge amount of her work will be offering reassurance.

Hope you manage to put your fears aside and dont worry too much about the radiotherapy - the time frame seems daunting at first but it quickly passes.

Best wishes

Steph x 

Hi Steph

Thank you so much for your reply 

You are right i have been overthinking things the consultant said she wasnt worried and of course they have removed my womb ovaries fallopian tubes  and hopefully most of the nasty stuff

I think i will be glad to get radiotherapy under way probably my planning scan on oct 21st then soon after treatment proper

You have made me feel quite comforted but i will speak to the nurse

I hope the time goes quick i feel for my husband who is driving the 40 mile round trip each day to the hospital

Without complaint i hasten to add

Thanks again Steph feel a little more settled

I will say i feel better since surgery then i have felt in ages

Feel energetic and raring to go

Thanks Steph

Best wishes

Lynne

Xxx

Hi Lynne (Sherwood Lady)

Like you I was very confused. Told by Oncologist that I was cured , then in the next breath she was saying that I needed RT Chemo and Brachy ! I spoke to numerous people as to why this would be, and like you my mind and over active imagination got the better of me. I also had LSVI, and this is what they consider a mopping up exercise. It all seemed very daunting.

So Operation had taken away the cancer as it was all contained, nothing in sample lymph nodes so all good. My hospital offer a taxi service for patients having RT daily as it would have been over 1600 miles that we travelled all together, it was a brilliant service, door to door and just me in the car. I was happy to attend on my own, I know others like someone with them. 

I had external RT (25) and day 2 was the first of 6 chemo treatments. so 2 chemo's that support the RT in the first 5 weeks. Then had a week off and then 3 Brachy ( the fear is worse than the treatment I think ) I couldn't complete my chemo so only had 5 in the end. I became neutropenic, immune system too low. 

It was all hardish but doable, there were differing side effects, some people get none at all. TRY not to think too far ahead, just take each consultation as it comes, don't try and second guess anything, but most importantly if you have any questions at all then ask, f you don't understand (there is a lot to take in ) then do ask again, no one minds, honestly. The team are on your side.

I finished my treatment in January this year, tiredness can still be an issue, but have learned to pace myself, back for my 2nd check up on the 22nd October. All good so far.

Take care,

LC

XX

Hi Lynne, The daily travelling can seem quite daunting. I was treated at our regional cancer centre located as part of one of the city’s two main hospitals. There was a hotel on the top floor specifically for patients and relatives. I didn’t need to use use it though I gather from a couple I met that it was ok. The facility was free to patients having ongoing treatment, relatives/carers paid £25 per night. Might be worth checking out just in case you feel a need to break up the travelling during the week if you find yourself struggling with fatigue. x

Hi Fairycake

I will look into this sort of thing

That would seem like a good idea my eldest son has said he would help out and do some if the journeys to save my husband doing the trip at least if your having chemo or  radiotherapy the car park fees are waived at this hospital

I dont know if this is the case generally

I am a little scared of the weeks ahead but it will come and go and hope for a good outcome

Regards

Lynne

Hi LC

Thank you for your reply

My mind gone into big over drive every visit to hospital has been different result very confusing isnt it and very scary

The consultant assured me or tried to that all was fine and it was just a mopping up job but every pain or ache i am thinking is this it 

What a wonderful service you had i would love that and

 Such a relief to be taken back and forth that was  lot of miles

For me it will be about 1000 miles in all very wearing i think

Glad all  good so far and hope your next check up is good

I will ask questions i will take each treatment day as it comes 

Kind regards too you

Lynne

Hi , 

I Remember how shocked I was when I was told that because of LVSI I was advised to have external and internal Radiotherapy. Life was just retuning to normal and I felt pretty well.  

I was given the choice of two centres for my radiotherapy.  The nearer one was only accessible by car, would have meant a hours journey each way with busy traffic and would have been very trying for my husband who was in his late seventies.  Our trust only offers transport in a last resort.  My other option was to go to London which I could do by public transport.  It still took about 1 1/2 hours each way but we could read (or doze) in the train.  I walked to and from the station at each end.  I do think that the exercise helped me keep my energy up.  The other advantage was that we were also able to go to quite a lot of shows and concerts over the 5 weeks which helped the time go by.  

I don't know your age but I think you have said you are retired.  So hopefully this means you can be a bit selfish and focus on getting through your treatment and giving yourself some treats over those weeks. 

Do remember to keep yourself well hydrated over the period. Your team will almost certainly stress the importance of this when you see them.  We can't cheat.   - I was told a couple of times during treatment that they could see from the scans that I wasn't drinking enough.

Once the first week or so is over, it is surprising how quickly the time goes 

Oh and it's almost five years since I was treated; I'm 81 now and still going!

Hi old lady

I too feel well but all a bit of a shock 

That does sound a good way of spending the weeks at least getting some other enjoyment to ofset the treatment

I am 66  and retired treats sounds a great idea the journey to the hospital is about  45 minutes so not so long but after 5 weeks i think it will be tedious luckily my eldest son has offered to take me to save my husband a few trips

They did say something about drinking plenty i will remember what you say and do my best

Very well done i hope you keep well for a long while yet

Very best wishes

Lynne

Hi Sherwood Lady I had cancer cells in my blood but I wasn't told until I recurred 6 months after my op. I was Stage 1a grade 1.  When I had my brachy treatment one of the nurses when asked about my treatment said I was a mop up.  I don't quite understand the difference between LVSI and cells in blood vessels, my lymphs were and recent CT show are clear.  You haven't mentioned what stage and grade you are. I was told when I asked why wasn't the cancer cells in my blood treated my consultant said they don't give treatment for my stage and grade.  I had brachy and I'm doing ok due for my second check up soon and I feel ok.  Take care Dawn x

Hi Sherwood lady,

Just wanted to tell you that my husband had radiotherapy for throat cancer. Although it resulted in poor healing for about 2 years afterwards, he has gone 11 years since the radiotherapy with no signs of anything returning! He apparently had 2 patches of cancer and if they had been joined together it would have been classed as Stage 4, so quite bad. We think the radiotherapy was well worth it!  xxxxx