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Newly diagnosed husband G9 - doctors in Philly area?

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Posted 9/1/2014 9:51 PM (GMT 0)
Hi!

I have been reading this excellent forum with great interest and am looking for recommendations for doctors in PA: Lehigh Valley or Philly area. My husband was very recently diagnosed with prostate cancer. We will probably need to get a second opinion soon. We are seeing Dr. Baccala (chief urologist at LVH) on Thursday, to hear about result of CT and bone scans, and to hear his treatment recommendations.

Here are some numbers:
Age 58
PSA 29.8
Gleason 9 (4+5)
Biopsy: 11/12 positive, 5 were 100% tumor

We were kind of braced for a PC diagnosis based on the PSA and an abnormal DRE, but the biopsy numbers are really (really) scaring me.

I'm guessing we may be looking for a medical oncologist to be talking to - any good ones in our area you folks know about? RO recommendations very welcome too. We were planning on either going to Fox Chase or University of Pennsylvania but it would be great to have a specific name.

Thanks in advance - and thanks for the education while we have both been lurking & frantically reading,

Regards,
Carolyn
Posted 9/1/2014 10:14 PM (GMT 0)
Read Dr. Pat Walsh's book..You CAN beat this, but you must hit it as hard as you can with everything you have....The scan results will direct the path his treatment follows..We are all here to help, welcome to the club no one wants to join, please keep us posted as things unfold...The Best Of Luck To You.......
Posted 9/1/2014 11:13 PM (GMT 0)
Carolyn
I can't give specific names but you live in an area with some of the best hospitals and doctors. I went to US News and World Report's best hospitals list and picked Johns Hopkins to which I flew for surgery. But Philly has great hospitals. Good luck!
Bob
Posted 9/2/2014 1:04 AM (GMT 0)
Carolyn,
Welcome to you and your husband to our club nobody wanted to be members of. Sounds like you qualify to be here.

I am a Gleason 3+4=7. Your husband will be one of our "Elite Members" since he us a Gleason 4+5=9. We have MANY Gleason 9ers here who are doing just find now so take a deep breathe for a little bit. They will be coming along shortly to give you advice and encouragement. In fact they kind of have their own little club here on Healing Well and will invite you to join it.

We do have members in your area so you should get some recommendations soon also.

Tell your husband, he will beat this! We have his back and will help him get thru this. He is not alone in this fight.

Good luck, stay with us!

Bill from Florida cool
Posted 9/2/2014 2:35 AM (GMT 0)
Eric Horwitz at Fox Chase does HDR brachy combos, I think. Robert Den at Thomas Jefferson University does as well. I'm sure there's someone at UOP too.

- Allen
Posted 9/2/2014 4:15 AM (GMT 0)
I have been treated at the university of penn. I have ductal and prostrate cancer. The Abramson cancer has done a fabulous job of taking care of me. I have DR STEPHEN KEEFE {MEDICAL ONOCOLOGIST}, Dr JUSTIN BEKELMEN[RADIATION ONOCOLOGIST}. All the DRs and especially the nurse practitioners have been fabulous. I have DRs cell phone numbers and never once has a question gone unanswered. Please check Dr. Bekelman resume and you will see why I chose him when I was researching the best DRs in the area. I have kept all of my treatment at the univ. of penn beause each DR. was able to look at my chart and information. From the cardiac surgeon to the urologist I have not had one complaint. I was most pleased with there review by the cancer board because I received the benefit of having several DRs from different backgrounds and specialties review my case. I am healing after receiving chemo {taxotere }and 44 radiation treatments. I am still reciving luprin. I feel good ,psa is undetectable at this time......BILL
Posted 9/2/2014 3:23 PM (GMT 0)
Thanks guys so much for the general encouragement and specific recommends both.

Allen, from your response sounds like maybe we should be expecting to hear about multiple radiation modes? Not sure what you mean by "combos".

Bill, glad to hear you are doing well and about your good treatment at Penn. It's just a bit far for treatment for us.....everyday travel is an issue, we care for an adult intellectually disabled son. But maybe we can get some consultation from there.

On top of all this I just got back from the vet, had to put our aged and much loved dog to sleep (he was in distress). And the vet (a sweet lady, she was upset too) said after he went - very peacefully - if only we could do that for humans when they really need it.

Well. You probably can imagine how that struck me. I don't mean to be too down or controversial or anything. It was just one of those "grit your teeth" moments especially after reading Walsh about bone pain (I just got the book last night, thank heavens for ebooks).

I am trying to breathe.....will definitely stick around.
Thx, Carolyn
Posted 9/2/2014 4:33 PM (GMT 0)
Welcome to HW, sorry you need to be talking to us.

Get a good medical team - that's the first step. Also take care of the mental/emotional side too - PC hits our spiritual/emotional life as hard as it hits the body (sometimes more). It's shock to learn you have to deal with all this. Educating yourself is a big step. Try not to project too far into the future - the numbers don't look good but there are plenty of treatments that will keep the beast at bay for a very long time.

Hang in there and ask any questions you've got or just vent if needed - we're here most days.
Keep us updated your progress,
Andrew
Posted 9/2/2014 5:06 PM (GMT 0)
I have a medical oncologist at Fox Chase and a radiation oncologist at Penn.

Dr. Wong at Fox Chase & Dr. Chen at Penn Medicine @ Valley Forge.

As far as my case I think both are excellent.

Good luck with whoever you decide to go with.

Jim
Posted 9/2/2014 10:25 PM (GMT 0)
Carolyn,
Sorry you have to be here. I had Dr. Alexander Kutikov for my RALP, Dr. Eric Horwitz for Adjuvant RT and Dr. Marjio Bilusec as my Medical Oncologist, all at Fox Chase. All excellent doctors. Sounds like it is a little dear for you. Best of luck to your family.
George
Posted 9/2/2014 11:00 PM (GMT 0)
Welcome Carolyn, sorry you have to be here. The fact that you are here on this forum and researching the disease puts you at a great advantage over those whom never do.

I'm a G9, a few month away from the 2 year mark. At diagnosis, my local Onco and Uro basically said that because of my bone metastasis, radiation and surgery would only cause unnecessary SE's and pretty much medicines (hormone therapy and beyond) were my only option.

At the time, there really was not much clinical data to suggest otherwise. Since then, there have been studies that indicate removing the primary tumor via surgery or radiation followed by ADT has a positive impact on overall survival. There is also the latest trial that showed starting chemo and ADT at the same time is beneficial.

We're learning more and more every day and they are finding that some of these new therapies are more effective if administered earlier in the disease treatment, rather than where they were tested (late in the treatment cycle).

Keep up the research and hope the bone scans come out clear!

All my best to you and your husband.
Posted 9/3/2014 6:37 PM (GMT 0)
Carolyn:

Philadelphia has great hospitals for you to work with and now they all are branching out to form affiliations with suburban hospitals, check all their websites to see what is in your area.  I am currently being treated by doctors at the University of Pennsylvania, what an outstanding group of doctors under the Abramson Cancer center.  I did not have my surgery at Penn but at a smaller hospital, however, I regret not going to Penn in the first place.  Dr. David Lee is the top Urologist/Prostate surgeon at Penn with over 2k prostectomies (sic) under his belt.  Even though Penn is a drive from the Leighigh Valley, get a second opinion and take your time and understand all the facts before you decide on the treatment, it is crucial... don't let the docs rush you!!  Look for the most experienced doctor and don't be afraid to ask questions, sometimes the docs don't like it but, tuff!

Good luck.

Joe

 

Posted 9/3/2014 9:56 PM (GMT 0)
I had my robotic surgery at Bryn Mawr Hospital by Dr Zeltser and it'll be three years this month on the 13th.

Cmetalman
Posted 9/3/2014 11:05 PM (GMT 0)
Carolyn- I'm so sorry to hear about your dog. What a hole in your heart that must leave.

Carolyn said...
Allen, from your response sounds like maybe we should be expecting to hear about multiple radiation modes? Not sure what you mean by "combos".

I hope there is no evidence of distant mets. If it is all local, I think he stands his best chance of a cure with "combo" therapy. They give external beam radiation to the entire pelvic area because he has a 50% chance that the cancer has spread to the pelvic lymph nodes. On top of that, they "boost" the radiation dose by combining it with HDR brachytherapy to the prostate and prostate bed. Cure rates with this kind of combo radiation therapy often exceed 90%.

Not only is it more effective than external beam radiation alone, but it takes a lot less time to deliver the total dose, cutting several weeks off the treatment time.

- Allen
Posted 9/4/2014 2:32 AM (GMT 0)
Thanks Allen, very clear. And yeah (about the dog).

Big day tomorrow - scan results....

Thanks again for all the good info & wishes everybody. Much appreciated.
Posted 9/5/2014 2:24 AM (GMT 0)
Scan results: Bone mets (3 pelvic). Lymph nodes. I'm not too coherent at the moment. Casodex + Lupron, urologist says he doesn't think radiation a good idea (reason: balance of risk of SE against (in his opinion) no good evidence of survival benefit). He is setting us up with MO. We will also do second opinion of course, probably Fox Chase.

Carolyn
Posted 9/5/2014 3:02 AM (GMT 0)
I'm so sorry to hear about the mets. Working with an oncologist at second opinion at Fox Chase is a great idea. There are still many options and many decisions to make. But there will be time to deal with all that later. Thanks for checking in - please continue to do that.

- Allen
Posted 9/5/2014 3:47 AM (GMT 0)
Welcome to the G9 club and sorry you are here.
It's not too late for radiation, although it would not be the normal course of action for you.
As others have said above, hit this hard, don't give up, and find a medical team that believes in fighting this with everything available.
I was 14/14 on my biopsy.
As you can see from my signature, I started with Casodex, added Firmagon (later changed to Lupron), did chemotherapy, had open RP, radiation, Xtandi, and now back to Casodex & Lupron. I even had another surgery in my chest to clear up a questionable scan. My scans are now clean, mets are resolved/stable, and my PSA is undetectable. It hasn't been easy but there is hope now for a durable remission after ADT2. This approach has been totally unconventional with my mets and lymph node involvement but its an approach that seems to be gaining steam. Bottom line is that you still have a lot of treatment options, even as a G9.
Best of luck to you. The first few weeks are awful, but it gets better. Just do what you have to do and start looking ahead.
Take care,
Gunner
Posted 9/6/2014 5:00 PM (GMT 0)
Hey Carolyn,

Your husbands DX sounds just like mine.  I'm 55, I started on Lupron and Casodex the day I got my bone scan results showing mets to my spine, ribs, sternum and shoulder.  It has done a good job dropping my PSA to 0.1 after 5 months and my latest bone scan showed no additional tumors and less uptake in the existing ones meaning they have responded to ADT.  My radonc (Dr Stillwagon, one of the best docs in ATL) suggested IMRT to the primary tumor, this was pooh poohed by my uro and medonc but after doing some research I found evidence to support this - it's very common in other forms of cancer and there is even a Stampede trial going on studying the effectiveness of this approach.  My uro was fearful of side effects which are small with IMRT, my med onc pushed chemo (I'm not ready for that yet but it is an option), so after a lot of research I decided to go with IMRT of my prostate and pelvic nodes.  I want to be as aggressive as my G9 cancer is.

I recommend that you read Snuffy Myers book, "Beating Prostate Cancer: Hormonal Therapy and Diet" its available on Amazon and I've found it the best book that I've read yet, it's very encouraging and educational.

Fourtunately there is a lot of treatments that can be thrown at this beast so stay hopeful and fight the fight!  A couple of links to check out...

Ed

http://www.redjournal.org/article/S0360-3016(13)01648-9/fulltext

http://www.jurology.com/article/S0022-5347(06)01449-2/abstract

Posted 9/6/2014 5:24 PM (GMT 0)
Carolyn, and also to Ed-Bar,
You found a great resource in this site, many Individuals here with the knowledge that can help, support in addition to what the Docs can give you. Carolyn ,your husband and Ed-Your DX and stats are similar to mine in some respects , Ed-you have had a much better response to get that PSA lower so far on Lupron. I'll check my T- levels, think they came down to 26 last year and currently after 1 1/2 year are below 18.I'll ask my Oncologist Docs when I see them next week. I have the same questions about that.I'm in So. Calif and being treated in Ariz. My e-mail is listed in my profile, hope to keep in touch with both of you more, Hang in there and Keep the Faith. Dan
Posted 9/6/2014 7:09 PM (GMT 0)
Sounds good Dan, I'll add my email to my profile, feel free to shoot me a note whenever you like, same goes for you Carolyn, together we can all keep the beast at bay.

Ed

Posted 9/7/2014 1:02 PM (GMT 0)
Sounds good to me and The Boss, I'll put our email in profile (warning: we both read it....so put a warning in header if you're going to say anything you don't want a woman reading). Thanks guys.

I have a cousin who's a medical oncologist, and we had a long phone conversation yesterday. He was very interested in my husband's mother's history (breast cancer both sides) and suggested checking for BRCA gene mutation. (Would fit with rapid PSA rise over the past year.) One more thing for the "worse and worse" list if that does turn out to be the case.
Posted 9/7/2014 9:52 PM (GMT 0)
Hello, I am new to this site and found this thread very interesting, I may, however, need to go to another thread. Carolyn, I was in your position last year, since then, my hubby had an open RP - PSA rose quickly but was only 4.1 when he opted for a biopsy (this was done after a second opinion, first urologist told him not to worry and go home and have sex). Biopsy results were 12/12 positive, 2 samples 100% and Gleason scores of 3+3 and 4+3 - very shocking to us and second Dr. Since RP, PSA was still rising (.39 - .68 in 3 months), CT scans and bone scans were all negative. He is getting ready to start IMRT in 2 weeks - had first Lupron shot in June, second one will be next week. My questions/concerns relate to side effects of the IMRT - are there any of you out there that can give me more information on your experiences? Spoke with a neighbor who did a series of IMRT and he told horror stories of pain and intestinal damage. Now I am almost as scared as I was with initial diagnosis. thank you
Posted 9/8/2014 12:22 AM (GMT 0)
Hello W_Wife,

Not sure who your neighber had for his radiology oncologist but I would steer clear of that doc.  Normally an IMRT is very precise, thus it normally has very few side effects.  Your radonc will do a C-Scan of the area to be treated a week or so before treatment and will use it to prepare a treatment plan with the help of a computer.  Before each treatment a scan will be taken to make certain that everything is ligned up correctly before treatment starts.  The IMRT machine rotates around the table while it delivers the treatment, each treatment lasts about 10 minutes or so.  It will be important that your husband has a full bladder and that he has a bowel movement prior to the intitial C-Scan and each treatment so time your treatments accordingly (I have mine in the afternoon when I've had plenty of time to take care of business). 

I've been through a week of IMRT so far and no problems - a little fatigue but this could be from the ADT and I've noticed a lesser urine stream at times - both are normal from IMRT and most side effects go away after a couple of months according to my doc.  I have friends who have had RT and all they said was they felt fatigue but it went away after treatment.

Just make sure that you have a good radonc and their equipment is up to date, don't be afraid to ask a lot of questions about it, after all you are putting a lot of trust in their abilities. 

Good luck,

Ed

Posted 9/8/2014 1:42 AM (GMT 0)
Hi W_Wife!

Can't comment from our own experience. If you only had one PSA test that showed an increase, I'd get it repeated, just to be sure.

I'd listen to Ed-Bar. Side effects are always possible but it seems that with a good doc and modern equipment, the incidence of really bad side effects is small. My husband was ready to do the RT, for what it's worth. Our doc was basically saying that if the benefit is zero (in my husband's case because the PCa is not localized anymore, scans show it in some bone, certainly not everybody agrees that benefit is zero in this kind of case), it's not worth even the small chance of risking side effects.

Also you should start your own topic about this so you can get people commenting on your own situation - it's kind of buried here.
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