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Please help. Looking for cancer treatment centers near Philadelphia PA and insight to my questions.

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Posted 2/24/2011 3:34 AM (GMT 0)
Hello. I used to post on the lyme forum. I'm brought to this forum because my father was diagnosed with prostate cancer this week. Inoperable. Dr recommended 45 treatments of radiation/chemo. He was told his was a 7/10. Anyone know what that means. His appt at Fox Chase isn't for a month. Why is it so far away? My concernis his CA could progress in a month. Any suggestions of other good centers? Any that work with herbs in conjunction with chemo? Amy response would be appreciated.
Posted 2/24/2011 4:20 AM (GMT 0)
With 291 (two hundred and ninety one)  posts on this forum, you have the experience to slow down and get some facts. 

 Please spend some time reading older posts here and getting an understanding about prostate cancer.  After that,  post again with the specific information about your father's diagnosis.  You will find great support and knowledge here that will answer your questions and concerns.

Posted 2/24/2011 4:27 AM (GMT 0)
lifeguyd, he/she probably has that many posts from the other forum, the Lymes forum. Just like I go to the Ostomie site sometimes and post since I have a stoma now. The number of posts add together when you are on multiple forums here.

Philly - I cant answer your question, but welcome here, someone familiar with that area should be able to supply you some names soon. Please keep us posted.

David in SC
Posted 2/24/2011 4:32 AM (GMT 0)
Welcome to our world Philly ---- sorry you have to be here but I'll try and answer a couple of your questions. Firstly I'll assume your Dad has had a biopsy. They would have given him a stage and Gleason score. It helps if you can supply as much information as possible from the pathology report. Prostate tumour cells are graded on how different they are from normal prostate cells. A grade of 3 is the norm now to be regarded as tumour cells. The more they are changed and hence the more aggressive they are the higher grade they score, so that 4 is more changed than 3 and 5 even more so. The Gleason score is reached by adding the two most dominant prostate cancer grades that are present in the gland. Your father is a Gleason 7. This could be either a (3+4) or a (4+3). (4+3) is a somewhat worse 7, as it indicates there is a greater amount of the more serious grade 4 cells present than the less aggressive grade 3. If the doctor has said the tumour is inoperable this means that it has escaped the gland itself and is present outside. This could mean local spread and/or distant metastases. They will radiate the gland and surrounding tissue to eliminate as much tumour as possible. Tumour cells are much more prone to radiation effects than normal cells. By chemo I am going to assume you mean HDT (hormone deprivation therapy). Prostate cancer is testosterone dependent , meaning it needs testosterone (at least for quite a while) to grow and survive, so reducing a man's testosterone levels can knock the tumour down quite a bit. Unfortunately this can have some side effects (such as weight gain, depression, loss of libido, but is normally reasonably tolerated in most men. PSA is usually a good indicator of how effective treatment is being. I wouldn't worry too much about herbs, although some things such as green tea, pomegranate are claimed to be of help but I would leave these alone till radiation is completed and the effectiveness of HRT is seen. You will find a very good read here :

www.yananow.org/StrangePlace

as well as the stories of men who have the same stats as your father and how well they are going here:

www.yananow.org/exp_data.php?query=order+by+cast%28diag_gs+as+signed%29,name&desc=Gleeson+Score

Hope this is of some help. I am sure plenty of other members will chime in with their support and information.
take care,
Bill

Post Edited (BillyMac) : 2/23/2011 9:49:53 PM (GMT-7)

Posted 2/24/2011 4:43 AM (GMT 0)
P,

I will agree with the 'slow down a bit', because there are some questions that would help the statements make more sense.

Was this diagnosis from a biopsy?

Did they do bone or CT scans that showed something outside of the prostate?

I ask because "inoperable" is a pretty strong word. It might be said in context of his age (possible, at a certain age doctors seem to advise against surgery - the surgery may be harder on him than the impact of cancer), or in context of something they saw in tests.

Did they use the term "Gleason" together with that 7/10?

We are sorry you've found yourself here, but welcome just the same.

(now as I start to post I see Billy has dropped in a lengthy set of questions, I'm not much of a typist)

Posted 2/24/2011 4:43 AM (GMT 0)

Purgatory said...
lifeguyd, he/she probably has that many posts from the other forum, the Lymes forum. Just like I go to the Ostomie site sometimes and post since I have a stoma now. The number of posts add together when you are on multiple forums here.

Philly - I cant answer your question, but welcome here, someone familiar with that area should be able to supply you some names soon. Please keep us posted.

David in SC

 

Yes purg I sort of figured that out..I was just telling here to slow down and read some older posts on pca.  My older posts here were all on the mentally defective section of this forum...lol redface

Posted 2/24/2011 5:40 AM (GMT 0)
Hi Philly,
Sorry that you had to jump forums, but you are most welcome here. There is a bit of missing data on your father. BillyMac did a nice job explaining some of those things. There is a lot to learn about prostate cancer and the thing is the more you know the more it helps. It sounds like the doctor feels the cancer is outside the prostate capsule and pretty well outside it. This would be the only reason to eliminate a surgical intervention. But chemo might be a bit early as that usually gets saved for later in the disease progression. Fox Chase is a reputable center and it's usually not a bad idea to seek an established prostate cancer program for treatment and Fox Chase has such a program. If you can get access to your fathers biopsy report it will help you understand things better. There are many here that can help you and your father read it. But it does sound like your father may well understand things with a first good decision to go to a reputable center.

I would not be surprised if your father was placed on hormonal therapy before radiation begins. This is consistent with many here in this forum. And while on that hormonal therapy your father may have an outstanding response. That too is consistent with many in this forum. The fact that radiation is recommended means that signs are favorable for your father's future. If the disease was at a dangerous point then a local therapy such as radiation would not likely be recommended.

Let us know what things you learn about his journey and we will be happy to help in any way we can...

Tony
Posted 2/24/2011 6:16 AM (GMT 0)
Thanks guys for responding so quickly. I will get back ASAP with my dad's info so I can get better, more specific advice. After I submitted this post I did a search and found 'diamond3' s post on 1/31/11 which was helpful. So far I do know his gleason is 3+4. No mention of a stage. Should he have been given one by his urologist or the pathology report. Don't think he has a copy of the pathology report. Will tell him to get it. He was considering getting a second opinion on the pathology report. Should he get one & by whom?He had a bone scan & CT scan that showed cysts in his kidneys, adrenals, ureter, & somewhere else. They advised an MRI to get more info on the cysts. dad said they didn't wanna operate cause they were afraid surgery would cause the CA to spread. (?)
He did have a biopsy.

Lifeguyd-cool name.your post is so true. And yes with my experience on the lyme forum, I have gotten back in the swing of things. I will get back with more info on my dad. Hope you'll get back.

Purgatory- thanks for welcoming me & your support.

Billymac-thanks for your THOROUGH explanation of the Gleason score. So thoughtful of you to take the time. They said 45 radiation treatments. I mistakenly said chemo. Didn't know the difference between radiation & chemo. The link is also very helpful. Thanks for providing it. Thanks for your sympathy.

142- yes, the diagnosis was made from a biopsy. My dad was considering getting a 2nd opinion on the biopsy. Should he? My brother said he didn't need to cause prostate CA is very common so the pathologists have a lot of experience. He says one should get a 2nd opinion if its a rare disease. Dad said the doc said surgery could cause the CA to spread. But, I read on another post radiation oncologists always suggest radiation and surgery docs recommend surgery. Your thoughts?

Please get back & I'll keep you alll posted.
Thanks again all! ---debbie
Posted 2/24/2011 7:16 AM (GMT 0)
TC LasVegas-
Thanks for responding. My dad's dr isn't responsive to a lot of questions. Just tells my dad not to worry he'll take care of him. Will get the biopsy report. Only radiation,no hormonal therapy was recommended.

What do you mean outside the prostate capsule? Could the questionable cysts be what the doc is referring to? Is that why the MRI?

My dad just got bone scan & CT results yesterday and was told no spread. Same day he was recommended to have radiation. His dr scheduled my dad's consult at Fox Chase on March 21 & was told the markers would be placed the next day.

Is it common for appts to be scheduled so far away? Could the disease advance in a month?

After the markers get placed, what's the usual wait time to get an appt for his first treatment?

Should I question his dr's integrity since he recommended no chemo & is only offering radiation?

Thank you all once more! skull smhair
Posted 2/24/2011 9:22 AM (GMT 0)
You are right Debbie. Rad guys normally push radiation and urologists normally push surgery. When you speak of your "doc" are you speaking of your GP (Primary Care Physician) or a specialist. If a GP, most of them don't know a great deal about the specifics of prostate cancer. The capsule refers to the tissue on the outside edge of the prostate (think of the skin on a plum). The month you are talking about will not really make any difference in the general scheme of things. Prostate cancer is usually a very slow growing disease. I do not like doctors that are not responsive to a patients questions especially one that says "don't worry about it , I'll take care of it all". It is my life and body and I would like to know what's going on thankyou. With prostate cancer you cannot have too much information and pathologists do disagree on grading. Most pathologists are general pathology guys so it would not hurt to have an expert prostate pathologist to look at the slides. Neither would it be a bad move to get another specialist opinion.
Bill
Posted 2/24/2011 12:27 PM (GMT 0)
Hi Philly..........I agree that it would be helpful to get some additonal info on your father. But to your specific question about Philadelphia-area treatment centers:

Fox Chase is indeed a reputable treatment center. I have several guys in my local PCa support group who have been treated there. There are about 5 of us here on the HW PCa forum who have had DaVinci robotic surgery at the Univ. of Penn, and all of us feel that we have received superb counseling and treatment. I realize that surgical intervention may/may not be in the cards for your father, but I'm suggesting that you call Penn Medicine's Abramson Center for another opinion/consult as to other forms of treatment. Penn now has Proton Beam therapy in addition to all other methods of radiation. You don't say where you are in the Philly area, but you could be within striking distance of Johns Hopkins in Baltimore------

Arnie in DE

Posted 2/24/2011 2:18 PM (GMT 0)
Dear Philapina,

 I'm sorry about your DAD . How old is he and does he have any other health issues ? After my husband was diognosed we

got some great suggestions here. We first sent the slides to Johns Hopkins for a second Pathology report and consulted again with our Urologist, Dr Bloc, as well as our GP and a surgeon in the Philly area who is also a friend. He directed us to Penn.

There are medical ltreatment protocals that are generally followed taking into account patient's age, gleason score , biopsy report and PSA. It is important to understand that what might be recommended for a 49 year old might not  be recommended for an 80 year old .

I assume he is seeing a urologist. I too found it frustrating that I did not know where to go for an objective opinion as surgeons recommend surgery and radiologisst recommend radiation.

I have seen recommendations , however, for cancer treatment centers such as Penn, John Hopkins, Fox Chase at Fox Chase . 

Posted 2/24/2011 2:52 PM (GMT 0)
P,

Yes, you may want a second opinion on the biopsy. If the first report is from Bostwick, I would say you didn't need one, and there are some other well known pathologists (Epstein) that members here suggest. Otherwise, if it is a local or insurance co. directed lab, I would ask for a second opinion. I guess your brother is trusting of his doctors. Remind him when he is up for his first biopsy.

Yes, the doctors suggest what they are comfortable with. My Uro did REQUIRE me to visit with a radiation oncologist before making a decision (the Uro was eventually my surgeon). This is why others are asking whether the "inoperable" statement comes from a GP or Uro/surgeon.

Yes, there are healing intervals in treatment steps. After the biopsy, they have to wait for the perforations to heal before surgery or radiation. My wait was about 6 weeks between biopsy and surgery, then minimum 18 weeks between surgery and radiation. Then you may have normal scheduling / equipment / doctor lead times added on.

From implanting gold seeds or Calypso markers, if they use them, you will need several weeks for the area to heal, and let the markers get stable. Then they would do a planning scan, and you will see another week wait for the doctors to build the plan. See my signature for my "journey". My IGRT was 39 sessions (adjuvant), while the 45 is for primary treatment.

And last for now, yes, age is a consideration. I was told by my surgeon that my age was important, that at 70+ they use radiation more than surgery - expecting that the cure may be worse than the disease. At my RT clinic, there were a number of much older men doing RT as a first line treatment.

 

Posted 2/24/2011 8:30 PM (GMT 0)

I think Arnie gave some good tips with U of P and perhaps a trip to John Hopkins as second opinions to Fox Chase.  I am one of the U of P/Penn Presby surgery patients but I did have a consult at Fox Chase and Thomas Jefferson University Hospital (http://www.jeffersonhospital.org/diseases-conditions/cancer-prostate.aspx).  I think any of these four places are worth considering.

As an aside, my dad who is now 89 was diagnosed with prostate cancer about five years ago.  He was treated by the local urologists with some shots (??) and is doing quite well.  I went with him for his last checkup and although is PSA is starting to rise a little - I think it was around 1.5- the doctor checked his records and told me that it was nearly 80 five years ago. 

Best of luck

Ray

Posted 2/24/2011 8:51 PM (GMT 0)
P,

I didn't comment about the PA facilities - that's far from my neighborhood. Wasn't avoiding that question, just have no input.

Posted 2/25/2011 12:25 AM (GMT 0)
I wouldn't suggest this doctor from the Philadelphia VA Medical Center:

http://www.newsworks.org/index.php/local/item/13833-doc

Posted 2/25/2011 9:59 AM (GMT 0)
All responses are much appreciated and thanks again for those that did post ! Hopefully I'll get my father's info together so you all will be able to offer me more info & suggestions. Anyone that has answers or opinions to any of my questions PLEASE respond & continue to follow up. I wanna learn as much as I can.

BillyMac- By doc I mean my dad's urologist. How easy is it to get an expert prostate pathologists opinion? Would that be covered by most insurances. My dad got his done by Montgomery Hospital's pathologists.some mentioned having slides looked at by Epstein and another one beginning with "B." Are these covered by insurance & how long would that take? I know you stated a month isn't a long time in the scheme of things, so would it take a while & hold things up for my dad to find another specialist? Also, my dad has an appt with Fox Chase and Abington Hospital. I suggested he stay with Fox Chase even though Abington is offering an appt 2 weeks in advance. What's your opinion?

Arnie- my father is 76 years old so that may be why surgery wasn't offered, but I'm not positve that's the reason. Don't other centers offer proton beam therapy too? Why did you specify Penn? Why did you suggest John Hopkins? Dad actually lives in Plymouth Mtg, but do you think the trip would be worth it?

Diamonds3- thank you for your post about your husband. I'm sorry for you and him. Good luck. My dad is 76 yo. He does have high blood pressure, high cholesterol, and borderline diabetes 2. What did it entail to get a second opinion fr John Hopkins & how long did that take? Why did your friend recommend Penn in particular?

142- What would it entail to get 2nd opinions from Bostwick/Epstein? Thanks for the info on healing times and seeds/markers.

Burlcodad- thanks for your suggestions and pointing out the significance og age.

Jerry L-thanks for the link.
Posted 2/25/2011 3:44 PM (GMT 0)
P,

Go to Bostwick's web site, where there is a page on second opinions:

https://www.bostwicklaboratories.com/global/services/laboratory-services/second-opinions.aspx

My uro used Bostwick, and I found them to be very helpful and considerate in some insurance billing issues.

As to whether it is covered by insurance, it depends on the company and the policy. You would need to call the service center for the insurance provider and ask.  Mine covered some things I never expected, and didn't allow some standard and common treatment options. Assume nothing with insurance. Say that a couple of times to be sure you remember it smilewinkgrin

Posted 2/26/2011 1:46 AM (GMT 0)
142- thanks for taking the time to get back. My dad has medicare and tricare. I WILL look into it. My dad got an earlier appt at Fox Chase for next Friday. Their pathologist is gonna review the slides. I hope he's competent. Everyone here seems so nice!
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