Heading for Stereotactic Radiotherapy

[Bcgkelly]

I thought it was time i put up an update. In December my PSA increased to 0.063 and I was advised to check with Heidelberg University Hospital in about a PSMA-PET scan. While it was not clear if my PSA below the level required for the hospital to locate the cancer they were confident and I had it done on 28th January. On the day my PSA was 0.123. The cancer was detected in a lymph node in the left iliac area which is consistent with the fact that I had two positive nodes removed during surgery both on the left. Everywhere else is clear at present and it is believed that the node was missed during surgery. I have had diverticular disease for 20 years and my bowel is difficult to manage. It is worse since surgery and having taken a lot of advice I have opted for stereotactic radiotherapy to the effected area which is being done in the next few weeks. I am not going on hormone treatment until we establish if the stereotactic radiotherapy is successful in keeping the cancer at bay. I have been told it may take 9-12 months before the PSA falls and settles. I’m still struggling with Incontinence and ED. Caverject injections have not been successful enough for penetration and I am looking at an implant later in the year. I have been told that because of the complications following surgery I’m only suitable for the more basic type of the coloplast genesis malleable type. While I know others are in a worse position than me I am finding it a long and tough road.

[GP24]

I would wait for the PSA value to reach 1.0 ng/ml and do another PSMA PET/CT then. Then you can have all the visible mets radiated in one go.

Now the PSA value can continue to rise because not all mets were visible at this low PSA level of 0.123.

[Bcgkelly in reply to GP24]

The professor in Germany advised immediate treatment was the best option. My case was also considered by a multidisciplinary team which included several radiation and medical oncologists, they recommended stereotactic radiotherapy. I have since seen another radiation oncologist who has agreed and advised that the collateral damage from entire pelvic radiation would effect my bowel and quality of life.

You may of course be right, there may be more Mets to follow but there’s no indication of anything now and I’m hoping this will buy me remission for a period. The ability to detect cancer at this level is new and no one really knows for certain until we are 10/15 years down the road how best to use the new knowledge. As you know it’s a tough road and to be honest I don’t think entire pelvic radiotherapy is for me anyway. But that’s my choice given my existing conditions and will not be for everyone many of which will choose the more traditional treatments.

[GP24 in reply to Bcgkelly]

I did not mean whole pelvic radiation. They can spot radiate e.g. three mets in one SBRT session.

If you do it now, you probably have booked a further SBRT radiation in less than a year from now. My experience is that doctors do not plan that far ahead

[Moespy]

Hi BcgKelly,

We can compare futures results.

My PSMA Scan (NIH Trial in USA) taken at PSA level of 0.4 lit up 1 iliac pelvic lymph node. I am going with full pelvic radiation along with 24 months of Lupron. Lupron shot tomorrow followed by 8 weeks of radiation starting in 45 days. I am counting on the skill of my Radiation Oncologist Team to get it right without severe side effects. I am using the same team that radiated my prostate bed 3 years ago without side effect.

I understand why you are not going this route with your bowel issue and I wish you the best possible outcome.

Jim

[Bcgkelly in reply to Moespy]

Thanks Jim,

You are very right we will be able to compare notes when we see how things work out for us. Hopefully we will both do okay. I also understand why you are taking the treatment plan you are. I’m already having problems with my bowel following the surgery last year and it wouldn’t take much to make things much worse for me. I have spoken to several different medical professionals and believe I know the possibilities of either treatment option. Hopefully it is the right choice for me.

Bill

[Moespy in reply to Bcgkelly]

I believe you are making an excellent choice that has showed great outcomes recently. We just need to be here when the bus finally arrives.

Best!

Jim

[Boston1967]

Hey Bill, hang in there. Lots of prayers and good wishes headed your way. The men on this site are nothing short of incredible. I feel very blessed to have found the site. My second follow up (6 month) is coming up next week on 3/8/19. Take care, Norman

[Fitzbruce1 in reply to Boston1967]

Boston-

I have my 6 month consultation on 3-12. I guess we both had a terrible surprise about the same time. A real game changer!

Bone scan next Monday. I am currently skiing in Colorado but live in Florida. Other than some pain from bone tumors, some reduced hot flashes and the mental strain, I am doing well with a PSA of 0.07.

Best wishes on your 6 month review!!

[j-o-h-n]

Wishing you much success...

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 02/27/2019 9:55 PM EST

[Bcgkelly in reply to j-o-h-n]

Thanks John