Anxious about RT to para aortic nodes side effects

Hi Maverikd 

I’m sorry that I don’t have a lot that I can advise you on, but I have a small thing- my husband had a lot of RT to his pelvic area and he had a “spacer” inserted to protect his rectum area. This is a hydrogel that’s injected through your perineum and into a space between your rectum wall and prostate area, it thickens and makes a barrier. After three months or so it dissolves and exits from your body. It’s a relatively new procedure. There is funding for the NHS which have approved it for certain cases ( I will try to find the details and add on ) But you may find you have to pay for it privately. My husband had it inserted at a private clinic called “Genesis care”they have centres up and down the country. I can’t give you a link here, but you can go to their website for research. 
Also, RT is so much more targeted now than years ago, it maybe worth asking questions about the type of machine being used and its capabilities. Obviously now they are all very good at the job. You could do some research on the MRIdian linac. There are  a few hospitals that have them . The Royal Marsden, Christies in Manchester and more, also the Genesis care centres mentioned. These machines are used in combination with a scanner, that can target and lock on to the tumour, if it moves away from the sight of the tumour it won’t work until it’s realigned. 
sorry it’s a basic explanation, I’m not medical, I’m just relaying what we were told, but it’s a place to start for your own research. 

All the best, I hope it all goes well for you 

Lorraine 

* I can’t find who will fund the “SpaceOar” in the NHS ( too early and need coffee) But it is available on the NHS. If you consult with your oncology team or urologist to determine your eligibility and how to access this technology and is it funded in their healthcare setting. You do need to be your own advocate sometimes, you sound like a candidate for it. 

Hi Maverikd,

I would suggest that you enquire about the availability of Surface Guided RT in your area. This is much more accurate than "normal" RT, I had this and did not need tattoos or the daily enemas, it may negate the need for a "spacer". I had no side effects attributable to the RT.   SGRT is not available at all NHS treatment centres, but I would suggest that a longer daily trip (within reason) to get it, is well worth considering. I was doing a 90 mile round trip by train/bus - in hindsight, I think I would have travelled twice that far if I had to.  (GWR had far more side effects !!!)

Thanks moonrakerz I am being treated at Royal Free London and they do have True Beam LINACS which are capable of delivering SGRT . I will check this with my radiotherapist though.

Thank BW  I did request for Space oar and pushing for it. Not eligible via NHS though . Because the Field of radiation is so large extending just before abdomen I have a huge exposure risk to bowels beside rectum. That is why I was checking here if anyone has done RT uptill para aortic nodes and what are common problems faces so at least I can make an informed decision. 

Hi 
I see. I’ve just asked Bw if he remembers exactly what he had covered with his RT and I’m afraid we are quite useless as It was all so stressful at the time. He had nodes zapped and his lower ribs as well as full pelvic RT, they went up the sides of his torso, he says he was spun round like a pig on a spit but has no idea what was happening. He also says he thinks he had the tops of his legs as well as hips. But I’m not so sure . It was extensive and was on a MRIdian linac  ( space age we thought) But what nodes he had treated, I can’t remember. It was two years ago and he has had no problems as yet. His bone marrow was hit hard and he was exhausted after, it took a few months to regain full strength and probably over a year for his bloods to settle down. His consultant says that he may have problems with internal scaring pulling in areas in later years , But as yet nothing - no bowel or bladder problem's . To be fair he’s always rushing off to the loo, but then he was doing that years before treatment. 
I’ll ask his consultant when we next have a meeting as I would like to know myself. I remember the consultant said we are going to hit you hard because you are young and strong and you can take it and we will cover everywhere we think it would have spread to.  That time has become a blur now, we seriously had no idea, we were so frightened with the whole thing.

I hope it goes well for you.

all the best. 
L 

Thanks for your detailed response. I am mid forties so being told the same thing.

But they also say no guarantee relapse will not happen and also listed dozens of side affects like diarrhea or bleeding which can be permanent. Bowel issues and host of others.

I am glad you guys are doing good. Comforting to know.

For me machine is LINAC and not MR LINAC not sure when MR LINACs are used apparently not for EBRT. They are covering all pelvic nodes impacted + all paraortic nodes .

They sound like they are the same thing? MRIdian linac must be the MRI scanner built into the machine? Interesting if they are different . BW has no bleeding from his bowel. He has slight loose bowels  sometimes, but always did as he has mild IBS . He was really worried about damage to his rectum/ bowel hense the SpaceOar.It’s hard to say if that stopped any damage,or the precision of the linac, but he has no actual damage to that area. (As yet) He says the SpaceOar initially felt quite bulky like he was sitting on a cushion. But he got used to it quite quickly and he didn’t notice it dissolve, He feels the spacer made a physical barrier to damage. ( his opinion)

I think in BWs case we were petrified that he would die soon (at that time) and we felt that the option of going full on with the RT was a risk that he was willing to take, we also had great optimism that if he was on the cusp of cure, this was going to be the way to swing the balance towards it and if there was damage so be it.

I think the more information you gather the easier your decision will be. 

L

Hi BW  can you please let me know where did you get your MR LINAC radiotherapy done and who was your radiography consultant ? Sounds like he was a competent person . I want to explore the same . I have private insurance so want to give it a try if they will approve. Thanks ! 

I am in the same boat very scared and anxious about the side affects and it seems MR LINAC is the best machine to help avoided side affects 

If you have private insurance you can go anywhere. We’ve had a mix of advice and care/ NHS and paid for/ private. Royal Marsden (second opinion) but we finally settled on Simon Russell in Addenbrooks Cambridge (recommended by RM consultant, look him up - very good at RT) is the Oncologist / consultant he used a Genesis care centre in Newmarket where they had the Linac. These centres are up and down the UK . The radiography person worked together with him . I’m sorry I have no name. They also did the SpaceOar. A specialist was brought in for that. Initially we had NHS who were brilliant at the start but unfortunately the wait times were so bad we couldn’t take it. A few communication problems as well. 
Personally I think second opinions are the way to go and looking at what available out there. It’s a bit of a pain to organise but very insightful . 
Genesis care have a website with lots of info and the consultant can be contacted by them as he has a day surgery? there or you can go direct. 
Well worth a chat 

Thanks BW I checked Genesis care -their website seems to suggest MR LINAc not suitable for large field RT other than prostate only RT .

Let.me call them and check up. You are right it is very painful coordinating multiple consultants and you waste a lot of time but getting the right treatment is better than being shoved with this is what you have and deal with side affects. 

Thanks for your detailed responses!