Stereotactic body radiation therapy (SBRT)

Hi Jane, welcome to the forum, sorry to find you here.

I've had the spacer procedure, I understand it's worth having for all external beam radiation treatment if the tumor location allows it. I've had no side effects from the procedure, and it acts as an insurance policy again much worse side effects in case the RT effects the rectum.

I'm locally advanced, and had radiotherapy to the prostate and lymph nodes last year. I asked for SBRT as it's fewer sessions, but my consultant told me at the time that there isn't an established protocol for SBRT for full pelvis radiation (which I needed) rather than prostate only, so I have to go with IMRT, of which I had 37 sessions.

Hormone therapy wise I'm having both 3-monthly injections and daily pills, though I wasn't fussed either way and didn't push for a specific option.

Hope this helps.

G

Good Morning Jane (DJN) 

A warm welcome to the Macmillan online Prostate Community although I am so sorry to find you here.

You look like you have done your research well so I will do my best to answer your questions although you have had some great answers from L1m .

* He would qualify for SBRT although at the moment it's not too common in the NHS so you need to check where it's available, and get referred, Link here:

www.macmillan.org.uk/.../stereotactic-ablative-radiotherapy-sabr

* A spacer or space oar isn't part of normal NHS treatment - it was introduced slowly in 2019 but COVID put a stop to it's general introduction - again you need to check with your NHS trust. It is available in a few places.

*Hormone Therapy (HT) is available in both forms but most NHS trusts give the injections (you can't forget them and the NHS do them!!) - there are varying types but all do the same job.

* Many Community members have had a second opinion - beware some have found it harder to get back into the NHS system.

I hope the above help. Feel free to ask anything, however trivial - one of us will get back to you.

Best wishes - Brian.

Thanks both for the quick replies, so much to take in. Am I correct in thinking he wont be offered any RT until he has been on HT and his PSA reading has gone down. 

Thanks very much

Jane

Hello Jane (DJN) 

Yes, you are correct. Radiotherapy is offered 3-6 months after Hormone Therapy has started and his PSA has reduced. The Hormone Therapy having reduced his testosterone production and put the prostate cancer "to sleep" by removing it's food.

Here's a link to a cracking guide to Prostate Cancer that should help:

https://issuu.com/magazineproduction/docs/js_prostate_cancer_guide_for_patients_ezine

We of course are still happy to answer any questions.

HT/RT will take it's toll on his fitness and fatigue is a side effect of both so keeping as fit as possible is a great start.

Best wishes - Brian.

Hi DJN 

Regarding the "spacer"  It is something the NHS is supposed to be rolling out, Is it's available yet??? hard to say, Mr BW had it because he has IBS and having 80% cancer in his prostate that was very close to the rectum it seemed a good idea.  If you have Private insurance you wont have a problem. Here is a link to "Genesis Care" they do them, There will be several other places, but I don't know where they are. Not trying to advertise of course, it's just that they did it and it was a very straight forward simple procedure. 

https://www.genesiscare.com/uk/treatment/radiotherapy/spacers-for-prostate-cancer-radiotherapy

L

* add on ; Mr BW says :  a needle was put through the perineum, he had a local anaesthetic. A gel is placed between the prostate and the rectum wall. The gel hardens into a "cushion" that pushes the rectum away. Whole  procedure 15 min. If you've had the biopsy it's nothing in comparison a walk in the park. It does feel like there is a small cushion in there.  it dissolves after three months.

Hope that helps

Thanks all for the replies.

I now have another issue, have just spoken to our dedicated cancer nurse to see when he will have an actual oncology appt, and apparently they are having major issues in Bristol with appts for this and its looking like Feb. This seems a very long time to wait and we would like to go and see someone sooner using his medical insurance. I actually live in Bucks, so was hoping for some help with hospitals around Buckinginhshire.

I am assuming we will need to wait to get his bone scan results first, he is having that this week and we have requested to get the MRI and biospsy results, or does the private consultant request them directly from the NHS.

Sorry for all the questions, but really need some help.

Thanks,

Jane

Hello Jane

I can understand your frustration here, so first off here's our guide to your rights under the NHS

https://www.macmillan.org.uk/cancer-information-and-support/get-help/raising-your-voice-toolkit/understanding-patient-rights

Under the "pick & chose" you can transfer treatment elsewhere.

If you chose to "go private" your healthcare provider can get all your records from the NHS with your consent.

As a Community Champion the "issues" I have come across with private healthcare are:

* They are great at giving advice on conditions and treatment needed but not all are "geared up" to provide treatments such as radiotherapy.

* Some Community members have had issues returning from private care in rejoining the NHS system.

If the delay at the hospital you are under exceeds the treatment guidelines, try contacting their "PALS" office (Patient Advisory and Liaison Service) you will find their details online and tell them it's cancer treatment and the delay is causing anxiety!! - We all have to advocate for ourselves these days !

I do hope this helps.

Best wishes - Brian.

Hi Jane,

get your scans done and go private for a treatment plan, see how you get on. Just phone your insurance for a chat and get it in place. Who wants to go through Christmas with this worry. You paid into a health insurance so just use it . Think of it this way - you are opening up a space for someone else on the NHS. don’t overthink it. 

It’s not worth looking into the politics of NHS/ private health.your husband is unwell . You paid into an insurance - use it . 

Or just switch now and have the whole thing done (bone scan/ pet scan) ? 

Lorraine 

If you are Buckinghamshire you are near London. so Royal Marsden or Addenbrookes Cambridge is good . Here's a good Cambridge consultant to get you started on your search.

( maybe not near enough?)

https://https://www.cambridgeurologypartnership.co.uk/the-team/simon-russell//the-team/simon-russell/

L

Thank you so much.

I have spoken to Prostrate UK, they have suggested we wait until we have his bone scans results, then try and see someone at Mount Vernon that's only 30 mins from me, their website looks like it has all the various equipment, do you have any suggestions for this hospital, with a possible NHS transfer by his GP in the near future.

Many thanks again,

Jane