First Oncologist Visit Done - Push Further into Hell

Hi WinnieHK,

I have not had a PET scan, but I have read that dietary supplements can affect the accuracy of the results.

Moreover, antioxidants from dietary supplements can also reduce the effectiveness of radiation therapy; please note that your doctor will likely advise stopping supplements before RT, or if (s)he doesn't, please do raise the question.

Regarding your question of whether to do RT or RT+HT, and your fear/concern about the HT effects, I think you would benefit from some of the comments from men who have undergone both...and hopefully they will comment here (I do not have experience in this area). What I have learned is that aggressive cases should be aggressively treated. Several here have been in your exact position, and hopefully they will comment...

WinnieHK,

I am G9 (5+4), pt3b. My PSA was 54.9. I am the same age as your husband. I had surgery, radiation, HT (part way through 3 years of it), plus chemo. Obviously, I am of the mindset that aggressive cancer needs aggressive treatment. I do have the typical HT side effects. But, I feel very good and I live my life quite normally. If your husband decides to pursue HT, we can offer more coping advice.

Bottom line: your husband is young and has a serious case of prostate cancer. I strongly think he should be aggressive and add HT. Don't gamble.

Winnie:

I have been on HT going on two years this October, I had my forth and hopefully final 6 month shot (Eligard-45mg) this past April, It has been a difficult roller coaster, first with the RP and then the radiation (36Gy) and still having to go on HT because the PSA was creeping up. Once I received my first HT shot the PSA went to undetectable and has stayed there. Without the support of my wonderful wife and family I don't know how I would have handled this ride. The side-effects from the HT, are more annoying then anything... Hot flashes, joint pain, fatigue and some minor ones, but these can be mitigated somewhat by working out at least three times a week doing aerobics and weight training, it really helps. One other note, if your husband starts on HT, watch his diet!! Even though he may eat the same amount of calories as he did before HT, he may gain weight, as the HT somewhat kills your metabolism, but you can eat a house :). I gained about 15 lbs in 18 months and it is real hard to get it off. Best of luck.

Winnie,

My thoughts are just my thoughts, I'm not a doctor. But anything that can be done to increase the % is a good thing. In my case I am throwing the kitchen sink at the beast and the doctors seem very optimistic. I had lupron 6 weeks prior to RT and will continue till I have finished 2 yrs. SE are not too bad but I found out that I can not work 80 hrs a week anymore. Of course it has nothing to do with age. :):) My wife has worse SE from menopause.

Ken

Winnie,

What you have been told, is very typical. When I was considering Salvage Radiation, for a proven failed surgery, at the very same Radiation Center, one RO said to do the radiation without HT, because she wanted to see if the radiation was working on its own, and not being masked by the HT. In the very next office over, the other RO wanted me to do the same amount of radiation, with HT being added in. They are partners in the same practice. When I pushed the RO that wanted to add in HT to the mix, he couldn't really justify it. He said that he couldn't prove that I needed it, and he couldn't prove that it would help. So, among other reasons, I went with the other RO. It's troubling to me when the "experts" can't even agree.

We talked about this before in your other thread, but if it were me, I wouldn't even agree to the Radiation until you get a more settled post-surgery PSA reading at 3 months out. There are men here with similar stats, they have done well just on the Radiation alone after surgery. The beauty of delaying even the radiation, is that your husband can still continue his surgical recovery, without the burden of the radiation and whatever side effects he picks up from that. It's a tough call that only you guys and the doctors can make, of course.

Please continue to keep us posted on what you decide to do.

david in sc

Prior to surgery, everyone is hopeful that the surgeon can get it all and that is probably why your Dr. did not advise ART or AHT. After surgery, post op stats clarify a more definitive disease. I was also advised ART and AHT after surgery, G9/PT3a. I am a advocate of avoiding ART or AHT unless PSA or margins are positive.

At this point, I think it is to soon to commit to either. Now is the time to do what you are doing and learn about all options. With that said, since your husband did have positive margins, I would at least be planning on ART if his PSA does not drop. So, you should at least have another PSA test prior to beginning ART. The best thing your husband can do now, is do everything he can that would help that PSA to drop with diet and exercise. I think you are out of country, but research available known supplements that help with PSA. Start your research here:

https://www.healingwell.com/community/default.aspx?f=35&m=2476379

It has been a common agreement on this forum, that you want to be as healed from surgery as much as possible, prior to ART.

Thanks everyone for the information and comments.

As I said before, our urologist has never suggested HT. Actually what he told us after reviewing the pathology report was...go ahead to do ART, it should be sufficient to tame the beast for 7-8 years. If in the unfortunate case that there is a remission or a spread by that time, we will then see how to treat it. He thought that 20+ sessions of ART should be enough but he will leave the decision to the oncologist.

You already know what my oncologist has suggested so I will not repeat.

Yesterday we called the urologist clinic, asking whether he could refer us to another oncologist who is recommended by our insurance company (the first oncologist is not a network doctor and he is really expensive). His nurse called back this morning and said the urologist still preferred the first oncologist and asked us to stop by his office so that he could answer any questions that we may have and explained why he wants to collaborate with this oncologist. He did not ask us to come to discuss about HT, so we guess he still did not think HT is required at this stage.

Later on I found out that my husband has bought another health insurance in June and the new insurance company is fine for us to be treated by this oncologist. In fact, according to my research, this oncologist is the best we have locally for IMRT, cyberknife, etc.

I have discussed our case with my friend who is a Chinese doctor (he is just a GP, not the one that is treating my husband) and he told us to have faith in Chinese medicine as supplementary treatment. I have also reviewed many local forums to check what kind of treatment others have used for treating cancer. I think it is now a norm locally to treat cancer with both the western and chinese medicine concurrently to give better results and higher survival rate.

I have also researched the chinese medicine that my husband is now taking and found that it has already included 'hormone therapy' in it.

For supplement, my husband is using reishi, green tea extract, black garlic and pom pills. He sunbathe for a short duration everyday in order to have more Vit D (sunshine is abundant in my city).

For food, his diet includes vegetables, fruits (mainly kiwis), sea fish, bean curd, soya milk, bread, pasta and rice. I buy organic food whenever I can.

The schedule for the next 2 weeks:-
- another PSA test on 15Aug (as it needs to be done before PET scan)
- meet the oncologist on 15Aug to see whether my husband is continent and has been healed enough for PET scan
- PET scan on 16Aug if everything is fine
- meet the urologist for PSA result on 20Aug

We will not add HT for the time being.

I pray that the PET scan is clear so that we can just stick to IMRT, get the 39 sessions over and move on.

Goodlife,
That was the best article I have read on all aspects of salvage RT. Anyone considering salvage RT should be made aware of this summary.
JT

My RO is going to be in charge of the androgen depravation therapy along with mapping the lymph nodes and the amount of radiation he will bless my pathetic body with. I guess I am wondering why your RO wants you to go back to your UO or the ADT? I know it is all down differently based on what state, city or clinic you go to. I have standing orders to go get by first Lupron shot when I want to and just need to walk into the RO's office and his nurse will shoot me up, schedule me for the CT scan so he can start mapping out where he is going to start to light me up with the greys!

Good luck.

Devasted,
Our urologist is also a surgical oncologist. Our oncologist is clinical oncologist and is only responsible for radiation and chemo therapy. My impression is that our urologist is playing the main lead in treating my husband's PC.
Actually our urologist asked us to come to his office this Sat morning as he wants to talk to us. From what we understand from his nurse, our urologist does not like my husband to have the PET scan on 16Aug. I will provides updates if there is anything special after the urologist's visit.

We are living in Hong Kong, so things might be different from US.