Gleason 9 Consult Questions to Ask?

adrianpoll said:

Gleason 9 - Three years after diagnosis

 

Elsie, I do hope you and your husband are doing well. I am writing because at the beginning of my cancer, my symptoms and situation were very much like your husband’s – Gleason 9 at the time it was first diagnosed by TURBT/biopsy. That was back in May 2012 so I thought it might be helpful if I shared my 3-year story and some of the key things I have learned.

First is the truism that each cancer is unique and different (despite the similarities). Right on!

My first year, 2012, felt like a turmoil of adjusting and learning, it felt like this cancer had taken over my life. My urologist put me on Firmagon as soon as the aggressive cancer was diagnosed. This was to “hold the fort” while we considered what to do next. I got the Walsh book and read all about my situation (I am a scientist and an information freak. You can’t imagine all the stuff I was studying on the internet!). I traveled 2 hours with my sons to Johns Hopkins for a consultation with Dr. Han. He was very practical and to-the-point: first he said that we should assume that it was endemic, and second he said that since it had invaded my bladder, surgery wasn’t a good idea so I should look for a radiation oncologist. On return I did a thorough internet search of all the local facilities and the biographies of all their doctors, picked my man and got lined up for a good solid course of radiation treatment to the prostate and first-tier lymph nodes at the end of 2012. Meanwhile, in  2012 I also had two great overseas trips.

After that, 2013 was like a rest cure! I got on with my life and we watched the PSA which went down and stayed down. But just in case, I signed up with a doctor at my state’s cancer institute (a top-notch comprehensive care place) that my radiation oncologist had told me about. This research clinical oncologist spent a full hour talking through about my case and answering all my technical questions, which much impressed me – I might need him one day.

Sure enough, in the spring of 2014 the PSA started coming up again. The doctors had been right to warn me - it was a very aggressive cancer. Bone scan showed a solitary metastasis in the knee (rather unusual). We all wondered what to do about this for a few months. Fortunately, by now I was already participating in a clinical trial at the cancer institute, so I was getting bone scans rather frequently. The most recent of these showed the cancer progressing down my tibia at a rate that sure got my attention. My urologist quickly took me off the Firmagon and put me on Lupron instead, and I am just now starting a course of radiation on the knee and tibia. Meanwhile I am still working, and in a few days am traveling to England, on a business project and also to visit with family members there.

I am so lucky to have such a really great team of doctors, accumulated in these three years, and all helping with this case in their different ways – urologist, radiation oncologist, clinical oncologist, general physician and psychiatrist. They usually agree with one another but by no means 100% of the time. This is not a problem, it’s only natural and it gives me an opportunity to try to figure out why and what to do about it. With a team like this, one or other of them will usually give me the clue I need to clear my mind at any given time.  I feel like I’ve been a good patient who has built good working relationships with them all as well as with the numerous technicians, nurses and other staff I’ve run across. I read the magazines in the clinics, too, and find lots of good ideas there about the attitudes that work and the examples we can follow.

The other way I’m lucky, as you may have figured, is that since I’m still working (at 71) I am able to afford the top level of insurance through my company’s benefit package. If you are able to get  and/or keep this kind of good insurance, hang on to it for dear life!    

All the best to you all in your many different journeys.

 

I'm so sorry to hear about your husband's turn for the worse, Shirley. Thank you for your thoughtful, helpful response during what must be a horrible time. I wish the both of you a good outcome despite this turn for the worse. Thanks also to Adrianpoll for your own detailed account of your similar case. I'm so sorry you've got bone involvement and wish you the very best care to keep your cancer in check. This board has been one of our most helpful resources. 

Where we are now:

--We head to Dana Farber tomorrow to get a second opinion about my husband's case.

--He took the Casodex for a month then moved on to Zolodex for three months then will get six-month Lupron. My husband is tolerating the Zolodex reasonably well. He's more tired than usual from it.

--He takes Flomax due to urinary urgency. It works reasonably well, but he now needs to scope out all the bathrooms wherever we go. The guy was a camel before this!

--He will have 8-10 weeks of radiation starting in about three weeks. Some markers will be implanted ahead of that to target the radiation. 

--He had a bladder biopsy the day before Thanksgiving, which showed no cancer. However, one of the ureters was a bit twisted, so the urologist couldn't get up there for a complete look. My husband will have an ultrasound next week so they can get a better look. The bladder biopsy, btw, lasted over two hours--I forget the name of the procedure but it wasn't the snip, snip type like the initial prostate biopsy. My husband had to be catherized for five days at home, something that wasn't mentioned ahead of the procedure! We've now had a discussion about how poorly prepared we were for this surgery--not even a handout. It completely derailed our Thanksgiving and delayed a big family trip in December by over a week. The office is poorly managed, but the doctors have very good reputations all the same. We don't have a lot of options in our area; everybody's in the same group. We're not taking anything for granted going forward. For what it's worth, they're part of the Mass General orbit and follow those protocols.

--My husband will have the overdue colonoscopy in three days. (He had an appendectomy and blockage surgery almost exactly a year ago--no cancer seen. All the same, I do have a worry because of the timing that the two events might be related.)

So after a three-week respite visiting family, we're back on the prostate roller coaster. The aforementioned plans may change depending on what Dana Farber (Dr. Kaplan) advises. We are far more informed now than we were just six weeks ago when I first posted. 

Thank you all again for sharing your stories. 

VascodaGama said:

A million-dollar question

Elsie

Thanks for the report on the consultation. I believe you got also answers on the other worrying issues so that you and your husband got the comfort and peace of mind so deserved. I wonder; ……..was it a dancing dinner?

A note on the combo treatment (HT + RT) is that through trials it has been shown that the combo provided 35% (higher) improvement in the outcomes against a radiation treatment done solo. This improvement seems to be more associated with the initial length of the neoadjuvant hormonal portion (HT before starting radiation), than the adjuvant length of HT. A neoadjuvant period of two to three months has shown better results.

The hormonal manipulations before RT make cells to be more receptive to the radiation “attack” (which is the one providing the killing). The adjuvant period in HT provides a continuous toxic environment for the “dizzy” prostatic cells, prohibiting these from an easy recovery (repair of the DNA). This seems to be the reason why one should not take beneficial antioxidants or supplements during and post RT period to maintain the toxicity.
The length of adjuvant HT is controversial, but most of the physicians agree that two years is too long and unnecessary. My lay opinion is that one year is enough if we consider the period of cell’s life cycle. In fact your husband can choose to stop earlier (after consulting his doctor), if he feels it difficult to withstand the hormonal side effects. Have a look at this link;

http://www.pcf.org/site/c.leJRIROrEpH/b.9071929/k.D61A/PCF_researchers_discover_molecular_

crosstalk_that_prostate_cancer_cells_use_to_survive_radiation_therapy_plan_steps_to_halt_that_

8220conversation8221.htm

The final goal is “cure” and we will confirm it when the PSA becomes stable. This is verified through tests done after the end of the effect of the hormonal treatment, which starts from about three months added to the period in HT. This means that the “masked” PSA during the long period under treatment cannot be used as a final judgement but it will be used to verify the progress.
In any case, it will be also necessary to check the effect of the LHRH agonist (Zoladex, Lupron, etc), which can only be done via Testosterone tests to confirm castration. I hope your husband gets one done NOW before taking the shot, and it continues with 6 month periodicals along the treatment.

Regarding the continuous blockade with Casodex plus Lupron, (single or double), it pertains to the experience of each oncologist. Some guys prefer to maintain Gleason 9 patients under constant double or triple blockade and some prefer mono with a LHRH agonist alone. It is not proved yet which choice is better. However, in the double blockade, the status of “castrate resistant” must be identified the soonest because cancer is known to feed on the antiandrogen Casodex (not on Lupron as commented by Shirley40 above), and this should be withdrawn at first sign. When the PSA rises in a low Testosterone environment it means that the cancer becomes “castrate resistant“. The cause is usually attributed to AR mutations. You can research details in the net if interested;
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2699836/

Gleason pattern 5 is for poorly differentiated type of cells that have lost many particulars of normal cells. They lost the ability of producing normal quantities of PSA serum and they have a faster life cycle. This makes them prune to respond faster to a radiation treatment, and this makes sense in trying to “attack” cancer, in this cohort of patients, aggressively from all fronts (combination therapies that may include chemo in the mixture), from the beginning. Though we are different and each cancer is unique, what works in some may not do so well in others. A newer DNA test provides better clues for one to make decisions on the treatment and on the times of its efficacy;

http://www.pcf.org/site/c.leJRIROrEpH/b.9204781/k.6E08/DNA_Blood_Test_Might_Identify_

Status_of_Prostate_Cancer.htm

Gleason 9 patients should be careful regarding osteoporosis. PCa loves weak bone. Many oncologists include in their protocol bisphosphonates, should the patient have existing critical osteopenia.

Fingers crossed for the results from the colonoscopy.

 

Best wishes,

 

VGama

A Note to Adrian;

Your posts are positive and inspiring to all of us. Welcome to the forum. Thanks for sharing your experience.

 

I'm blown away by both your detailed responses to my posting about the Dana Farber visit. I'll need some time to absorb all the information, especially yours VdeG because I want to read up on all the links especially the Casodex info, which I don't totally understand. 

I'll see if I can work on my man to do those testosterone measurements though he's already on the hormone treatment. He had so many procedures and appointments, he didn't get around to that or the bone density scan. Onward with many thanks, Adrian and V. 

VascodaGama said:

Where is your man? He should be more involved in his care

Elsie

I am sorry if by any means my post created any confusion in regards to the Casodex. I did not want to be too technical but I think it good for you to understand details of the treatment. By knowing such and the function of the drugs, you will become less anxious. I would suggest your man to get involved in the matter and also subscribe to this or other PCa forum. He will like to talk and discuss with others in the same boat.

In fact hormonal treatments are simply done with the purposes of blocking all paths of circulating androgens (testosterone in males) so that these do not reach neither are absorbed by the cancerous cells, which feed and survive on the stuff. These drugs do not address directly the cancer but it work well in a palliative way, during long periods of time.
Traditionally, the androgen deprivation therapy – ADT (HT) is done by turning down (blocking) the factory of testosterone (the testes) using a LHRH agonist (ex; Lupron). This drug causes castration (low levels of T circulating in the body). A second blockade is done with an antiandrogen (ex; Casodex). This works at the cells’ receptors, blocking the androgen receptors (AR) therefore avoiding these from “absorbing” circulating androgens. Still other blockades are performed but they are not typically done at the initial stage of the treatment. They are used later (as second-line HT) when the traditional failed.

Zoladex and Lupron work at the pituitary causing in some guys blurred vision and recognition impairment. The castration status leads to menopause like symptoms being fatigue and depression the worse. But it also may cause fast or irregular heartbeat, which is worrisome in guys with heart problems.

Casodex stuck in the cell’s receptors. It manages to do this because it is made of a similar bio-structure as the real androgen. In other words, it mimics a real androgen “faking” the cell that will try to absorb it. This action on cell’s AR is thought to be the reason that provides a better stimulus during radiation.
Casodex manages to act like that for very long periods in the treatment; however, at some time in some guys, these receptors mutate and start feeding on the Casodex itself, which must be withdrawn.

The worse side effects from Casodex are breathless symptoms, breast increases and tenderness, and loss of sex drive. There is no particular worry about taking Casodex. The castrate resistance or refractory status typically occurs after many months into the treatment. One must be vigilant with the periodical blood tests and at the first notice should think in trying to stop taking the antiandrogen. The reaction is instantaneous. This is a phenomenon named Anti-Androgen Withdrawal Response (AAWR). There are many links in the net providing detailed information on the matter.

Here are some you may be interested in reading;
http://prostate-cancer.org/aawr-the-anti-androgen-withdrawal-response/

https://www.google.co.uk/url?sa=t&rct=j&q=&esrc=s&source=web&cd=4&sqi=2&ved=0CDw
QFjAD&url=https%3A%2F%2Fwww.urmc.rochester.edu%2Fgeorge-whipple-lab%2Fdocume
nts%2F23-JCB-04-Miyamoto.pdf&ei=GBmtVNu3GoHbUviRhKgJ&usg=AFQjCNHs5xv8QZx5MFWYj66RP
vekpHrcmA&bvm=bv.83134100,d.d24&cad=rjt

About the side effects;
http://www.macmillan.org.uk/Cancerinformation/Cancertreatment/Treatmenttypes/Hormon
altherapies/Individualhormonaltherapies/Bicalutamide.aspx

http://www.medicinenet.com/leuprolide-injection/page2.htm

 

The testosterone test should be done before the Zoladex shot and controlled thereafter with periodicals like the PSA. Dexa scan can be done at anytime.

You are wonderful to care so much for him.

Sincerely,

VG 

 

Dear Vasco.

I wonder if you would mind revising your last post, at least the parts about my husband not being more involved in his care. You know nothing about that. Nothing. We are a team, and I took charge of posting on this board with my own questions. He has done massive amounts of research elsewhere. Our printer is cranking out his research all day long. I am quite insulted by your comments, especially since I've trusted your information so much. Now I wouldn't dream of suggesting that he take a look at this site. 

We have been married for decades and tag team each other all the time. That is why we are still married. He has done triple the amount of research I have done while getting tested, examined, operated on, and much more. Your posting is inappropriate and upsetting.