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Mary's Groups
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Hormone Suppression
73 members
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PSA Persists After RP
71 members
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Wives and Partners
88 members
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hi mary -
i just listened to a CancerCare podcast on bone care and prostate cancer (http://www.cancercare.org/get_help/tew_details.php?tew=prostate_032409&ret=%2Fget_help%2Ftew_archive%2Fcancer_type.php&origin=enews_0909p ) that was excellent and...
Mary,
Welcome to a club that nobody wants to join. I see that you have gotten some very good advice here so far - I just want to add my two cents. Like your husband, everything looked good for me right after surgery but PSA began rising almost im...
It is unlikely, though possible that the injection may be of the wrong kind. If you ask, before the actual injection, to see the product insert from the sealed package, it will have the dose prominently displayed. This will assure you are receivin...
Regarding P2P: It is not necessary to study the archives, though they can be helpful later on. What I suggest is posting a PCa Digest and specific questions. A response should be posted within a few days.
NB: The most prolific poster, med onc Ste...
Thank you *so* much, Steve.
I've taken a preliminary look at the P2P list. I say preliminary, since there is so much info that I find my mind seizing up from information overload.
The one concrete question I have at this point, and maybe you or ...
Although systemic PCa cannot be cured (yet), it is treatable.
I'd expect a response from Dr. Myers' shop at any moment, once the holiday is past.
A systemic PCa requires systemic tx, which is what a medical oncologist does. ADT is systemic, as i...
Hi Steve --
Thank you so much for responding to me at length. You're providing me with just the kind of info I need.
There's so much conflicting info out there about ADT. I'm just glad to hear that we're making the right first move.
I'm all too...
Supplementing Rick's post:
When I discovered that my rad onc knew nothing and cared even less about the side effects of ADT, I fired him (enjoyed writing the letter) and consulted a medical oncologist. Still with her five years later.
It is prud...
hello mary -
failure to provide an oncologist, particulalrly an oncologist well versed in PrCa is a frequent complaint from PrCa patients throughout the country. for no good reason i have been able to discover, urologists and rad oncs continue to...
Dear Mary:
Hormone therapy + radiation is a standard form of treatment for someone with a rising PSA after radical prostatectomy. It succeeds in placing many men into long-term remission, but there are NO promises because everything tends to depe...
I don;t know the specifics of the radiation therapy yet -- is that IMRT?
But what interests me about your story is that you mention chemo. I'm just starting to research salvage treatments, and I haven;t seen much mention of chemo yet. Is there su...
Hi Mary;
This is a very similar story to mine. I'm currently on month 7 of Trellstar Depot (ADT).
8 months after my RP, my PSA started rising. At that point, I decided to get aggressive. I did 37 courses of radiation, then chemo and ADT. I've co...
Sorry - I just sent this a few minutes ago by accident as a message. What I wanted to do was start a discussion.
My partner was diagnosed with Pca last fall – Gleason 9 (5+4) in 60% of two of the cores. Pre-op bone scans and CT scans were clean. ...
How to manage side effects. Is there a survival benefit to early suppression versus delayed? Discussion about the latest research on intermittent deprivation and testosterone replacement therapy in the treatment of PCa.
Hi Maureen --
You say in your post "When I call him everynight, he talks about other patients he meets who go to radiation..."
Is you husband being treated at a facility distant from your home?
Reason I ask, my partner is probably going to be r...
Would you have any recommendations for the Albany, NY area?
We're willing to go afield, but somebody excellent right in the area would be wonderful.
Profile Information
- Have you been diagnosed with prostate cancer?
- No
- What brings you to the New Prostate Cancer InfoLink social network?
- My boyfreind has prostate cancer
Last summer my 62 year old partner received a callback from a routine PSA screening: his number – 25!
I didn;t know anything much about prostate cancer (then) but within a few days I'd read enough on the web to be close to panic. My partner – I'll call him John – was referred to a urologist specializing in prostate cancer and within a month he'd had an MRI and a bone scan and of course a biopsy.
Results: biopsy Gleason 6; (only 5% of one core) everything else clean.
Well, that was a relief. But now what treatment...? John was leaning towards radiation, I thought a RP might be better. The urologist said we had time to decide, and why not have another biopsy.
A month later the second biopsy was done, and when the results came back it was a Gleason 9 (5+4) in 60% of two of the cores. Three weeks later John was on the operating table. The operation was a robot-assisted radical, no nerves spared, lymph nodes removed.
Pathologist report looked good: Lymph nodes clean, just a tiny nick (<1mm) on the prostate capsule.
But his 3-month follow-up PSA was 0.11 and at 6 months the number was 0.15, and we're already discussing radiation and ADT.
So it doesn't look like we're just going to be just getting on with our lives and dealing with the incontinence and sexual difficulties that we both knew were coming.
But I'm glad to connect with this kind of a group. Hope you all can help a bit.
Comment Wall (7 comments)
- At 5:42pm on July 10, 2009,
Jean said… - Have a wonderful trip.
- At 4:12pm on July 9, 2009,
Jean said…
- Hmmm Wendell is a Corporate Controller so he is an accountant. Both partners are obviously analytical and I think that (plus their gender) probably helps them go with the flow. Wouldn't it be nice to be able to do that? I was reading a study recently where they talked of the role the women take in Prostate Cancer. It seems that we really do have a much higher level of anxiety than the actual patients and that we are the researchers and support group workers. They are putting it down to the fact that women see themselves as caretakers of the family's health. I don't know if I agree with that 100%. I believe that it is much more complex.
How are you making out? Are you able to handle this okay? Is there anybody in your life where you can be 100% honest about what you are going through or do you find that others "feel you are being disloyal to your partner" when you speak openly. That is how another woman described her friends reactions to me.
- At 12:01am on July 9, 2009,
Angela Jenkins said… - Mary - the site is a little different than most. To join the group you should be able to go to groups at the top, scroll down to the W&P group, click to open the group, then on the top right corner click on "join the group". It should let you right in and show that you're a new member in the group. Through this journey, whether 1 day, 1 week or 1 year, we're still going through different phases of PCa and its effects on our lives. It's great to have a site like this to share and get personal feedback from others. It's been nearly 2 years ago since we found out about my husband's diagnosis, and nothing like this site existed for me to talk to other wives and survivors about the "true" facts of post treatment, etc. Feel free to ask anything...we're here to help.
- At 10:33pm on July 8, 2009,
Jean said…
- Hello Mary:
I'm sorry to hear that you and your partner also are going through a diagnosis similar to my husband's. There are so many decisions that have to be made all while you are bombarded with information that can be down right terrifying. I find it hard to keep the spirits up sometimes. If you need information though I think that you are in the right place. Does your boyfriend have a place to find out information or are you the one who is reaching out? P.S. I also am a Canadian. Though I live in Boise Idaho, I moved here from Vancouver BC 7 years ago.
- At 9:53pm on July 8, 2009,
Angela Jenkins said…
- Mary - welcome to the network! You'll find this site to be an excellent source of information, experience, hope and support from our members who include both survivors, partners, and professionals. Take a look at the various groups and discussions - you'll find them quite informative. Please join us in the Wives and Partners group - this is a great group to share your concerns, fears, and feelings. Also, if you've just found out his diagnosis, you may want to take a look at the "newly diagnosed" section on our main site. We're all in this together - and prostate cancer is a "couples disease". If you have any specific questions, please let us know and we'll help you find the answer. I'll send you an e-mail with my contact information. If you ever just need to talk, feel free to contact me.
- At 12:10pm on July 8, 2009,
Jean said…
- Hello Mary:
Welcome to our group. I just thought that I would let you know that my husband has Prostate Cancer and I have found this to be a really good group not just for finding out about this insidious disease but also to have contact with other women whose partners are fighting this battle. This truly is a couple's disease not just a man's disease. It also is a place where you can be completely open about your feelings and your anonymity will be protected. Welcome aboard.
- At 7:39am on July 8, 2009,
E. Michael D. ("Mike") Scott said…
- Hello Mary ... Can you tell us a little more about your friend and his cancer so that we can see how to best help you (and him)? For example:
-- How young/old is he?
-- When was he diagnosed?
-- Has he had any treatment yet?
-- What was his PSA level at diagnosis?
-- What was his Gleason score at diagnosis (a pair of numbers like 3 + 3 = 6)?
You might also like to think about joining the "Wives and Partners" group, where you can get some support yourself from women who have already "been where you are" now.
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