Husband Diagnosed G9 2 days ago

RedWing57-
Were you able to work through your treatments, or did you take a leave? I feel stupid saying this, but I am not 100% sure what our LTD options are at this point through my husband's employer (it's been so long since we scrutinized that benefits package, I just don't remember).

WifeofPie said...
RedWing57-
Were you able to work through your treatments, or did you take a leave? I feel stupid saying this, but I am not 100% sure what our LTD options are at this point through my husband's employer (it's been so long since we scrutinized that benefits package, I just don't remember).

Your benefit options are important. You may also have options under the Americans with Disabilities Act (if you're in the US), as cancer is one of the covered aspects. An employer is to provide a reasonable accommodation if necessary. Maybe a 2 hour lunch, with the time made up at the end of the day, or something like that. He may or may not be comfortable letting the employer know about the situation. I wasn't, cynically expecting my employer to get rid of me at the next financial bottleneck. That didn't happen, but I never did make it very widely known at work.

I didn't miss a day of work. My radiation treatments were at lunch time, and the hospital was about 40 minutes from where I worked. So, my wife (retired) was kind enough to come pick me up, drive me to the cancer center, wait with me, and then drive me back. She even would have picked up a lunch for me to eat in the car on the way back, and I could nap for 20+ minutes during the ride. If I had to do it all by myself it would have been much harder, but still "do-able". I felt kind of tired after each treatment, but not dysfunctionally so. I deeply appreciate my caregiver!!

The treatments themselves took up about an hour. I got there 1/2 hour early to check in, and the actual treatment process was no more than 15 minutes. The wild card was the occasional delay due to a prior patient, or the machine itself, having some issue. A couple of times it took 2 hours or more. So, if you have mid-day appointments see if your husband's employer is able to let him be flexible with his time. It won't be under his control.

Evening appointments weren't available, since all of that machine time was dedicated to treating hospital in-patients. If you get a really early appointment, you're at less risk of a delay, but it's trickier to get your body into the right condition (full bladder, empty rectum) first thing in the morning.

The treatment side effects were never to the degree that taking time off work would have been necessary. I largely do office work anyway, so it's not a very physically strenuous job.

Please don't listen to an urologist that is mot a specialist in PCa. Surgery does not get it out if it is outside the surgical area. And what is the difference between cutting it out with surgery versus killing it wit radiation? Gone is gone. There is no magic to surgery. Surgery for high risk men is inferior to radiation treatment in most cases. By definition the radiation kills the cancer over a larger area than the surgery can excise. Radiation is much kinder on the nerves as well. Most likely surgery would take the nerves where radiation does not. Much better probability of good functioning after radiation than surgery.

For now please don't jump to conclusions. You are in the data collection time. You have only spoken with one surgeon who showed you he is biased toward surgery and wrong about radiation. You spoke to another who had the gall to make a treatment suggestion outside his speciality and without having studied you husband or examined him. How can you take that advice seriously?

Take your time and go visit some radiation specialists and listen to them about radiation. Take this one step at a time. Be diligent and determined. Above all try to relax and minimize the stress.

Thank you- I had the same responses to this guy saying "this is what I would do" with nothing more than biopsy results.

Ok that at least makes me feel like my annoyed response was justified. Haha. Seems like even doctors who specialize in prostate cancer aren't always equipped to address the high risk type, which seems to be so much Rarer.

WifeofPie,
My first two consults with Urologists were very depressing, basically surgery, then 2nd offered to cut wide, followed by radiation. 2nd was a urologists who specialized in cancer treatment.
I was lucky in having a neighbor who had recently gone through brachy therapy treatment and provided me with another possibility to look at. I then went into full research mode and came to the conclusion that surgery followed by radiation was not my best option.
This site and http://www.yananow.org/Links.shtml helped me make an informed decision.
Get the best treatment offering a cure for the type of PC you have with the least long term side effects. Two major forms of treatment only increases your risk of permanent side effects. The radiation covers a much wider area and that is the reason it works better for higher risk cases. In my mind, if this radiation didn’t work then the surgery certainly wouldn’t have, meaning it was already systemic.
If you can, try to find a radiation oncologist who specializes in treating only prostate cancer. The first RO was a generalist and didn’t have the expertise for this specific disease. 2nd did, Dattoli in Sarasota FL.
I had the triple play, which consisted of ADT, external beam and Brachy therapy. The ADT was manageable and it is a temporary altered state.

These positive stories have helped us get through what started out as a really dark weekend (I don't think I've ever felt that horrible as when we got home from the doctor on Thursday night). We both have so much more hope for a long and quality future. This week, we're hoping to get the bone scan and MRI completed, and we plan to call the two UCLA docs and hope to meet with them with results of both. We're also going to ask about a shot of Lupron to halt the progress immediately. It is helpful to have some things on a "to do" list.

MRI is tomorrow morning, Bone Scan is Thursday. Glad to be moving forward.

We are prepared to begin HT as soon as possible, assuming that no matter which route we go that will be a part of the treatment, and it makes sense to halt progression now (we will start having appointments after the scan results come in, I am thinking that's when we'll work toward the HT).

We are both usually pretty good at figuring out what there's sort of "no question" about...and sucking it up and dealing with it (as opposed to agonizing over a decision when there's fear it could be the wrong one, if that makes sense). It seems that in the case of HT, there's really no question. It has to happen for a while, regardless of which other protocol we choose.

I may have read too much about HT, but it's sounding dreadful in some of the papers I've read. Is it not really all that bad? Will he likely feel different but still himself? Be more prone to depression?

That actually really makes me feel less awful about it, thanks for that perspective, Michael T.

I wondered how exercise would be affected as well as how it would work to combat the side effects. I teach group exercise classes at the gym, and my husband is pretty accustomed to pretty tough workouts. He's not terribly vain about how he looks (and he carries extra weight because we do like to eat...food is good), but he likes feeling strong and has a lot of muscle mass. I was afraid he might feel weak without T...which maybe he will to a degree, but knowing that he still can exercise and try to combat some of the side effects is good.

Dumb question...but which doctors generally manage the hormone therapy? We will loop back with the original urologist (despite the fact that I don't really think either of us wishes to move forward with him for treatment, but he's the guy who diagnosed and ordered the scans, so we'll meet with him at least one more time to go over those results). Would he do that, or the doc who administers the radiation? Or does an endocrinologist do the HT in partnership with the RO?

Any RO, Uro, MO or PCP can prescribe it and give him the shots. It's much cheaper if his PCP does it in his office outside of a hospital (the hospital will charge you an additional fee!).

Exercise is important for many reasons - certainly to maintain lean body mass and bone density and prevent fat accumulation while on ADT. If you choose a type of radiation that takes many treatments, exercise prevents fatigue. With all radiation, exercise (increased oxygenation) helps the radiation kill more cancer cells while protecting healthy tissue.

Michael T- you said you live in Southern Cal and went to Dr. Demanes at UCLA. We are in contact with his office and trying to get an appointment with him next week when we have MRI and bone scan results.

I know i'm probably getting ahead of myself here, but I'm trying to figure out what's realistic - Do you have any idea if Drs. Demanes and King can sort of "order" treatments that are delivered elsewhere (like UCIrvine or Hoag or something) so that we wouldn't necessarily have to be at UCLA for every treatment? Were your treatments delivered at UCLA medical center?

OK Thanks! I'm sorry - I thought you had gone to Dr. Demanes, but you answered the spirit of my question ;)

I like your QB reference. My husband was just saying he wanted a medical oncologist to be the "point guard" for him to help him coordinate the multiple therapies and specialists. I'd like to find someone like that closer to home for us.

WifeofPie-

I'm not a fan of that approach - in my experience with patients, they get in the way rather than facilitate. If you go with Demanes, he is your expert and your QB, and will work with your local IMRT RO - why complicate things with another player who really doesn't add any specific expertise? Medical oncologists are expert in incurable PC, not curable ones.