Bone Scan Tomorrow

It's me again.....I guess I just need to use this as an outlet for my concerns about my Pca. I am sorry if I take up anyone's time. This just seems like the right place to put things out there. Sometimes a response isn't as important as the therapeutic gain I get just to put things in writing (and then re-read my own post).

So, my bone scan is tomorrow. I have had constant back pain for several weeks. It started at the base and now I have pain mid-back too. Naturally, I have myself convinced that it is because of Pca. Again, Dr says with my stats, it probability is not......but I dread laying on that darn table tomorrow! I dread getting the 'call'. I guess we've all gone thru the 'tests', any tests, some of us more than others. Does it ever get any easier?

I guess we all come to a point of acceptance. I am not quite there yet. I believe that when I do, my anxiety level will go down and my focus will get better. I am doing everything I can to schedule 2nd and 3rd opinions, specialist consults, etc. but seem to be navigating it thru the fog in my brain.

So, as I read many other posts, I am comforted to know that there is so much knowledgeable and caring people out here. All of the non "newby's" have been in my shoes, so you understand my current situation. I hope to one day be a much more meaningful contributor, until then, I need to lean on you guys a little longer.

Enjoy your day.....it is going to be near 80 degrees here in NJ today!

Jay -

I'm not a doc but I don't think the bone scan will find anything given your stats. I also convinced myself my on and off back pain was from PCa but alas, more likely aging and overdoing it from time to time.

Don't start worrying until you have to, there are too many what-if's. Relax but try not to fall asleep during your bone scan like I did...

Jon

ps...no worries about posting like crazy about your situation. I did that also and found it very therapeutic also. It was a good way for me to document some of my feelings and issues and get some good input. I have even looked at some of my past posts as a reminder of what I was going through at times. Sometimes I really didn't worry so much about a response even though they helped; it was about putting my thoughts and feelings into words. I tried to write a bit of a diary type thing on paper but I got tired of that real fast so this site was my diary. Now if I can help someone a bit I do, but even that I find therapeutic also.

JayMot, Good luck with the scans today. I know both my husband and I were terrified for his scans and thought every ache and pain was the cancer. All turned out well on the front. Make sure you keep us updated and try to get out and enjoy this beautiful day in NJ!

JayMot, I haven't updated my husband's profile lately. He had IGRT starting in May 2015 and concluding in July. He also had a year of Lupron shots. He's doing well. And I really need to update his profile!

My bone scan/cat scan indicated "bone deterioration in both shoulders and left knee" and "small hiatus hernia". I said in response, "tell me something I didn't know".

I have every confidence that the bone scan will in fact find bones.

Hang in there, you're going to be fine.

Andrew

J, there ya go. Now to the work of getting information and figuring out YOUR treatment plan. With 7/12 positives, PNI, and that one 4+3 (have you had your slides sent for 2nd opinion?), you're in the group that (a) needs treatment and (b) is likely cureable by any of the typical treatments.

It comes down to how your head works, and what is important to you. Here is my condensed view of the options:

Surgery (Robotic or open)
Advantages: Really, outcomes are similar, it all depends on the individual skill of the surgeon, so pick one who has done a lot and is willing to share his individual outcome records with you.

To me, the advantages of surgery (and I'm a surgery guy) are (a) you know within a few days what your true pathology is. (b) You have the advantage of a rapid, usually within 3 months, PSA drop to nil. (c) You have 1 24-48 hour hospital stay, followed by a few weeks of convalescence at home. Yes, it's major surgery, and it takes it's physical toll, but it's done and over in a few weeks or months.

Disadvantages of Surgery: Depending on your surgeon's skill, the individual surgical trauma you sustain, and "luck", you stand a reasonable chance of developing temporary or permanent incontinence and ED. How that plays out is all over the map. A lot of it seems to depend on whether you have any, and they mean ANY issues along those lines pre-surgery. Also, the level of nerve removal needed in surgery, and possibly the variables of your anatomy compared to others.

Also, it appears from comments in this forum, variabilities in the level of physical activity you engage in daily seems to have both a positive and occasional negative effect on incontinence in particular.

Radiation: it comes in several flavors, with the two main subdivisions being external beam types and brachytherapy (seed placement)

Here again is my take: You'll find in this forum a lot of adamant 'radiation is way better than surgery' folks here, a lot more than you'll find that are adamant that 'surgery is way better than radiation' guys.

That being said, the way I saw it..and still see it today goes like this:

The external beam types (and SBRT is a hybrid between brachy and external), take a number of visits for treatment, varying from a handful (usually 5) for SBRT, to up to several dozen for EBRT. So, if you can easily get to and from the treatment center, that's one thing. If you (like me) would have an all day round trip for each treatment event, that can be a whole 'nother thing.

Brachytherapy involved inserting 'seeds' or radiation pellets into the prostate and letting it radiate from the inside out.

Radiation advantages: Less invasive than surgery, usually relatively short treatment visits (a few minutes up to a few hours). Overnight hospitalization is rare. Immediate side effects are minimal (lots of naps are commonly reported) Many brachytherapy patients in particular report 'no biggie': they go in a couple of times to plan the placement then get them placed and that's it.

Radiation disadvantages: It takes a while for it to take effect. The radiation protocols talk about PSA nadir, and it is monitored for quite a while until it bottoms out, which can take several months or longer. Also, you'll never know your 'true' pathology. For many, that's not a big deal. For some, it is a huge reason to not do radiation. The long term side effects are a challenge. There is some research out there that suggests (not proves conclusively) that the 10-20 year out side effects of radiation can be a serious issue. Both from collateral damage to the rectum and other pelvic body parts, and the development of other urinary tract issues, including ED, incontinence, bladder problems, etc, often long into the future.

These are risks...how high? Hard to say. But it is information to weigh.

Hey Jay, I bumped up my thread from when I started my trial at NIH so you can get an idea of what the treatment prior to surgery was like for me(My Treatment: Goserelin & Enzalutimide, surgery in 6 months)

Just briefly, the National Institute of Health ( NIH Clinical Center) is a federally run hospital in Bethesda, Maryland associated with the National Cancer Institute. They run clinical trials. You can find their website easily.

I had my 3tMRI, bone scan, ct scan,targeted biopsy, etc done there. I was unsure of what treatment I wanted so they did what they call a Multi Disciplinary Meeting where I met with with Drs and their teams from surgeons, Medical Oncologists, and Radiation Oncologists. They reviewed my case before hand and discussed it together and then spoke to me; sometimes together and at some point individually to discuss the options that they thought were best for me. I actually had to have a second Multi Disciplinary meeting because when some of the tests came back that they ordered from the first one, my diagnosis changed for the worse and I was more confused then before. At the end of those meetings they also discuss what trials they think suit you best. At a minimum I could have just had the surgery with them and the trial was just them keeping the prostate for study.

I chose the Enzalutimide trial because I was worried when they found the possible seminal vesicle invasion and possible extra capsular extension on the 3tMRI. Though I initially had been back and forth from radiation to surgery I decided I did not want radiation. And if SVI and ECE were in fact there I would almost certainly need radiation at some point. The hope was that the HT drugs would shrink and kill the cancer away from those areas so that the surgery alone would be successful. They did the 3tMRI before HT and 6 months later; right before surgery, they did another to see the results. The results were as good as we could of hoped for. Tumor size went from 3.6cm to 1.5cm. The possible SVI and ECE was no longer showing on the MRI. Prostate also shrunk from 32cc to 14cc. Only time will tell if it was truly successful but the pathology report was excellent also.

Jay, if you need anymore info, just let me know. I can email it to you. If you decide to look into NIH I may be able to help with some contact info if you can't get through with their site. If you decide to look into it I would almost certainly tell them that you are having a hard time making a decision and would like the multi disciplinary meeting to help you decide. I always had to stress that I wanted things to proceed as fast as possible, they complied to a degree but it was still a bit of a time consuming process.

Good luck with whatever you decide...Jim

I agree with Manfred that age and stage should be included when choosing between surgery and radiation. With radiation there is a small, but over time, increasing the risk of secondary cancer. This should be considered when the expected remaining life is 30, 40, .. years, particularly in low- and medium- risk cancer because the risk is very small for the patient to die of their prostate cancer.