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SpaceOar, gold markers, SBRT: any feedback

User
Posted 07 Feb 2018 at 18:16
Does anyone have first hand experience of SpaceOar or gold markers ahead of radiotherapy? And has anyone been give SBRT instead of the usual 39 sessions of external beam radiotherapy? Was it NHS or private? I'm seeing the oncologist next week and gathering info. Thanks
User
Posted 07 Feb 2018 at 19:33

Gold markers are common now so quite a few members have had these. The only members I can think of that had SpaceOar were Palerider and Bui but he hasn't logged on for a long time. No harm sending him a private message though as he may still receive notifications (assuming his treatment was successful)

Palerider is still active and described his treatment here http://community.prostatecanceruk.org/default.aspx?g=posts&m=176274#post176274

Edited by member 07 Feb 2018 at 19:37  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 08 Feb 2018 at 14:58

Hello K1952,

I've just seen your post and I went through the process you are thinking about.

Given only the choice of surgery or RT, I opted for RT.

I was put on Bicalutamide a month before the RT, which lowered testosterone and gave me very sore breasts. Although the course has finished (it was only 6 weeks) I am still tender, but expect this to abate once all of the chemicals are out of my body. The fiducial markers and spacer were inserted under a general anaesthetic. I was admitted at 7.00am, the operation completed by 10.00am, and was fully conscious by 11.00. I went home about 3.00pm. I had no problems afterwards apart from a slight sore throat because of the breathing tube that is inserted while you're under. I didn't have any other major problems, there was a bit of blood in my stools for a day or two, but no pain. 

I then had an MRI about 3 weeks after to plot the path of the RT and to make sure fiducial were still in place. A week later I had  the Cyberknife RT, which typically takes place 2- 4 weeks after the insertion procedure. Five sessions is much preferable to the 35+ sessions with the lower beam RT. There is no pain during the process, and I suffered no hair loss, nor sunburn type rash to the pelvic area, just a general sense of tiredness and fatigue. This becomes more noticeable with each session. The 5 sessions were delivered over 2 weeks, though initially scheduled for one week, but I was pretty shattered so they gave me a few days off and I completed the sessions in 10 days, rather than 5. Each session lasts about 20-30 minutes of treatment delivery, but there it takes longer because the robot and the patient needs to be re-adjusted from time to time. Prepare for about an hour and a half. 

I had blood in my stools a few days later for a day, but that has gone now. I have lots of flatulence, and bowel movements are loose. I was proscribed Tamsulosin to make it easier to pee, but this is a short term course that makes emptying your bladder much easier. I get up once, often twice during the night, but I have not been caught short anywhere, nor felt I couldn't leave the house because of incontinence. I just pee more often. 

I had the treatment done privately and the experience I had was very good. All the personnel involved were women, apart from the anaesthetist and the surgeon who inserted the markers and spacer. They have all been brilliant, charming bedside manners and answered any questions with detailed explanations. 

I saw the specialist this week who will do a PSA test after Easter, an MRI in 12 months. I was anxious about the length of time I would have to wait to get the all clear, but she re-assured me that being slim and fit my recovery and defeat of the cancer should proceed without a hitch.

I went private because Cyberknife is not available on the NHS. A PACE trial was underway when I consulted the NHS oncologist in October, I am not sure if it is still running, but it was a blind sample, so I may or may not have received Cyberknife. I opted for it as it was targeted, intense and of short duration. 

At the Centre, Macmillan provide 2 free massages for you as well.

As a precaution for what may happen in the future, I went to see the ED specialist. Another woman and good to talk to her about what steps you can take should this happen. The fee, which is significant, is not covered by private insurance. In hindsight I would have spent the fee on another pursuit which may have delivered a more satisfying result. There is plenty of information available online and particularly through Macmillan, so you can save your pennies.

I haven't slept particularly well since the treatment, and even before that, but if you read my posts you will see that other factors are at play.

Let me know if you'd like to know more about my experience. 

Pale Rider.

 

User
Posted 11 Feb 2018 at 01:57
Hi Pale Rider

Wow ... a very comprehensive reply thank you!

I'm seeing the oncologist on Tuesday and will talk it through with him. I know Cyberknife is costly and your comments make me less inclined to consider this option.

Thanks again

Keith

User
Posted 08 Jan 2019 at 19:57
Cheshire Chris - for your information :-)
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 08 Jan 2019 at 20:59
Thanks, Lyn. Much appreciated!

Chris

User
Posted 29 Jul 2019 at 22:15

Pale Rider,

 

Thanks for that very informative post

I too am considering cyberknife, and i hope you don't mind answering a few questions (please private message reply if you wish)

I am considering RT as against surgery due to possible side effects re incontinence, ED etc .. although I am aware RT comes with its own drawbacks. Also successful surgery appears to have a lot to do with the experience/skill of the surgeon and not sure I would want to gamble on this variable.

Cyberknife itself appears to have some distinct advantages regarding accuracy of the radiation, hence higher dose where it's needed and hopefully less damage to nearby organs, plus the timescale of treatment/sessions (5 sessions in 1 -2 weeks) seems a lot more preferable/manageable

Were there any other factors that meant you chose Cyberknife?

As for the Hormone treatment I notice you said that you were on this (Bicalutamide ) for 6 weeks, do you know if this is shorter than would be required for "standard" EBRT and if so was this because of your physical fitness/physiology or something inherent because of the short timescale of the Cyberknife treatment?

Did you consider RT to the breast buds to somewhat negate the Breast enlargement/Sore nipple?

Did you experience/expect any urinary problems from cyberknife eg any catheters required?

Looking back now are you pleased with the choice you made and are there any things you would have done differently? (Sorry awful question - easier viewed in hindsight)

Finally cost - I would need to fund this myself (no Private Insurance) so would be grateful if you could indicate a ballpark figure (incl  pre and post op work/scans/consultations and space OAR, as well as Cyberknife itself)

Realise this is a lot to ask but grateful for your info and thoughts (Please message me direct if you prefer - I would have done the same but being a new "contributor" I was prevented from doing so)

Happy to hear from anyone who also considered Cyberknife (even if then discounted it - and if so the reasons)

Thanks and hope all is going well

User
Posted 30 Jul 2019 at 07:01
Normally for EBRT you’d be on HT for 6 months prior to RT commencing, and for 18 months afterwards (ie 2 years in total). A small dose of Tamoxifen (a 20mg tablet once or twice a week) is effective for many men in suppressing breast growth - ask your oncologist to prescribe this.

Best wishes,

Chris

User
Posted 30 Jul 2019 at 09:41
I had gold markers but these were inserted under local anaesthetic. It was similar to the biopsy but much less painful and I was able to drive myself home afterwards. The markers were part of a treatment plan that included 6 months of hormone therapy (bicalutamide) which started 4 months before the start of treatment and continued for a month or so afterwards.

I had 20 sessions of EBRT done under the "dose painting" idea that more centres are using now. In short, the prostate as a whole receives the same dose as it would under the more normal 36 session treatment but the actual tumours receive a much higher dose.

The bicalutamide caused some hot flushes, some breast tenderness and some enlargement although none of this was severe. Not sure I would have wanted the hormone treatment to have continued for much longer though.

User
Posted 30 Jul 2019 at 12:10

Bcalmed

My husband had Cyberknife through the Pace trial at the Royal Marsden (Fulham Road.)

At diagnosis in January 2018, he was graded as T2c - Gleason 3+4.   PSA was fairly low hovering around the 5 mark.  Initially, he was more interested in having a prostatectomy but agreed to go into the trial and was selected for Cyberknife.

Following gold seed insertion, the Cyberknife radiation was carried out at the end of August 2018 and his PSA has since reduced to 0.85 at the last test in June 2019.

He has some side effects including bowel urgency.   The trial does not provide the option for the SPACEoar.

If you are interested in this, why not ask for a referral to a participating hospital.   You don't necessarily have to go through the Royal Marsden.   From memory, the criteria are that you must not have had any hormone treatment, be Gleason 3+4 or less, T2 or under and have a PSA under 20.   Hormone therapy is not used on the trial as it has not proven to offer additional benefit with this particular type of radiation.

Let me know if you need any further info.

 

User
Posted 30 Jul 2019 at 13:15

Another possibility for men with a low Gleason score with their cancer in a reachable part of their Prostate is HIFU which can be repeated in need with radiation saved to treat some spread if this is needed. Also, HIFU  side effects are generally less than with one of the forms of RT. It is normally administered within a trial for NHS patients or can be done privately. Whilst HIFU is gradually becoming more widely available, it's still very small scale at present. It may be that in due course even HIFU is surpassed by TULSA-PRO which is a similar ablation procedure about which I have a post awaiting moderation under the reference section.

Edited by member 30 Jul 2019 at 14:01  | Reason: Not specified

Barry
User
Posted 31 Jul 2019 at 13:02

Chris/Pete/Vicky?Barry

Thanks for taking time out to reply - its all useful information and definitely gives me some things to think about

User
Posted 01 Aug 2019 at 22:00

At the place I'm being done, all EBRT patients get the gold markers unless there's a reason they can't have them. One reason you can't have them (which applies to me) is if you are having brachytherapy afterwards, as the markers would get in the way. I've met other patients who've skipped them due to interactions with other treatments such as blood thinners and epilepsy drugs.

If you have the gold markers, you are lined up for treatment by the RT machine taking two X-rays at right angles to work out how far out of alignment you are and move the table to correct position. If you don't have the gold markers, the machine has to do a CBCT scan (Cone Beam CT scan - a type of CT scan) to form a 3-D image of your pelvis, to work out the movement required to the table. The CBCT takes longer (so fewer patients processed on the RT machine) and gives you a significantly higher X-ray dose. The dose is subtracted from your main RT therapy dose, but it's not masked off from other organs at risk, so there is an extra risk over just 2 plain X-rays for gold markers, which are vastly smaller X-ray doses than any [CB]CT scan.

 
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