The Battle Continues..

These last 8 months have sure been a roller coaster for my husband and I!! Hopefully, you can see his history in the signature. Aggressive, stage 4 adenocarcinoma cancer. Our local urologist (who is terrific, by the way) immediately suggested that my husband go to Mayo Clinic and see Dr. Karnes which we did. He had a TURBT procedure there and on October 23 had a radical prostatectomy. We knew this was an aggressive treatment going in and it proved to be a very long, difficult operation. The surgery was 9.5 hours long with prostate removal, 19 out of 22 lymph nodes positive for cancer, both seminal vesicles invaded, positive margins, left and right bladder bases, left anterior apex, had a partial cystectomy with bladder neck reconstruction, right uretal implant, left uretal stenting, and to top it off an umbilical hernia repair. There are also more lymph nodes in upper abdomen they wanted to remove. but could not due to Tim having trouble with blood pressure while under anesthesia and other difficulties. We made it back home and he began his recovery. The Saturday night before Thanksgiving he calls for me and the next thing I see is him in the kitchen doubled over, with blood running down his leg. Long story short-rushed to ER (local hospital and urologist), both incisions opened up (Inside and out), surgery to repair and close incisions. Next day, he runs a fever of 104.6, beginning of sepsis, ends up in ICU, pumped full of antibiotics, and finally comes back home day before Thanksgiving. I never would have expected what happened in a million years!! Removed outside staples last Wednesday. His fascia (muscle) sutures are supported by other sutures to the outside of his body-kind of like an extra support system. They will stay in for a few weeks longer.

He was due for his 6 week PSA post prostatectomy reading on Thursday. It came back at 13.9!! We were crushed!! Our local uro told Tim to stop Casodex immediately and get another PSA done on Wednesday. He is also scheduled for a 6 month Lupron shot and uretal stent removal this Friday. I have been "googling" anti androgen withdrawl to understand it more.

I am sorry this is such a long post, but I wanted to give you some background. We have done what we thought would be the best to help fight this horrible battle. As we continue we will be looking into oncologists and I am wondering what type-medical, radiation, or both? My husband would like to go to Cleveland Clinic for oncologists (much closer to home and he had a heart procedure there 2 years ago) even though Roswell Park Cancer Institute is closer to us.

I appreciate your knowledge and have really learned a lot from your posts. Thanks!!

Sally I'm new he and still learning. But one thing that strikes me, is that for myself, just diagnosed, I've seen surgeons, urologist, and about to see a second RO, all from different hospitals. They don't talk to each other. Right now, pre treatment, no need to. But still....for your husbands situation, it seems like you need a team approach.

I would go to CC or Roawell, and I think they both arre comprehensive centers with all disciplines. May be someone more knowledgeable can chime in, I think you can go there and arrange to meet with a team from all disciplines, then move from there. In any case, if your docs are all from one facility, they will all see the entire history online, and be able to consult with each other.

After my primary treatment, if I need anything more, like SRT, I've decided for this reason, that I will go to MSKCC. I think in your husbands situation, it's even more important.

Hi MustangSally52,
Very Sorry to hear about all the complications from surgery. You and your husband have been through a lot in the past few months. I am pretty new to this site only having discovered it after my surgery last February. But what I have seen from this forum so far, is that this disease is highly unpredictable and no one really ever knows if their treatment plan is the best plan or if it will work. I think we just do what we think is best and now you know for sure that additional treatment will be necessary and is available.

It sounds like you've been running from one emergency to the next without respite. I can't imagine anything more stressful.

Since they knew before surgery that it was Stage 4, I assume the prostate/LN removal was for the purpose of debulking the cancer and slowing down the spread. This is controversial. Sometimes it's done with radiation instead, which may be preferable when there are heart problems, as well as other reasons. I assume the staging was based on a bone scan and there were distant mets?

As for the PSA... I'm not sure what your expectations were, but I hope that no one intimated that the surgery might be curative with Stage 4 disease. It looks like he had a 6 month Lupron shot 6 months ago, and it is wearing off now. I think it's just telling you that it's time for another shot.

As for next steps... the new standard of care when there are multiple distant mets is docetaxel with ADT ASAP. I'm sure the oncologists at Cleveland Clinic will tell you about that. Be sure to bring up clinical trials if that is something you're interested in.

I hope you both have an easier time of it from here on.

- Allen

So sorry that you are going through this! I think Paul may have to pass on his crown to you all after this- he is no longer king of the "if it can go wrong it will go wrong"....

I do hope he is improving well by now. Do keep an eye on those retention sutures- Paul also had them after his second surgery was opening up too.... But they were left in too long and some had to be cut and dug out. Pay close attention to where the knots are and that skin does not grow over them.... Paul said they were terribly uncomfortable.

Will be rooting for you both and hope for updates with good news soon.

Would it be fair to say that it is too early to give up on ADT. Perhaps adding Avodart to the Lupron regimen would be another good step, especially given the lack of serious side effects from Avodart. It blocks DHT conversion and helps in killing cancer cells.

ADT3 + Docetaxel seems to be a good option, where Casodex is replaced with Zytiga or Xtandi.

Arthur