Locally advanced/stage

[Fdccs]

Hi,

After returning from the hospital I am a little confused as with pelvic lymph node spread my husband was told it's locally advanced and with radiotherapy they are looking to treat to cure. On another website (cancer UK) it says lymph node involvement is stage 4 and once it gets to that stage there is no cure.

I'm sure the hospital isn't fibbing but I'm one of those people who like to understand things and this seems to contradict itself in as much as locally advanced is curable but stage 4 isn't

[Tall_Allen]

Here's an article discussing it:

pcnrv.blogspot.com/2016/08/...

As for the website you refer to - what is their evidence? (a question you should ALWAYS be asking)

[Dayatatime]

Unfortunately depending where you look and who you talk to you will get a different answer for this question. It is a fact nothing is definitive however it is also a fact men have beat advanced disease with aggressive multi modal treatment therapies when mets are limited. The jury is still out and it's looking better all the time.

Whether it's RT or RP you need to have a team working together and all have the same goal in mind. If going for curative (and you should) you need an oncologist that knows prostate drugs to knock your PSA down to a very low point before any treatment is administered. The weaker the cancer the better the result. Think of it as a boxer beating down an opponent before a knock out punch is thrown. I am also an advocate of early chemo because it gets to places other treatments simply cannot. That would include the lymphatic system and circulating tumor cells in the blood stream. You may want to ask about that.

I had heavy disease in my pelvic and abdominal nodes. Several told me there wasn't much they could do and I didn't listen. I found a team that believed otherwise and went after it. I am currently at no evidence of disease with an undetectable PSA. Check out my profile if you would like to see my treatment approach. Get it in your head it can be done and move on it.

Ron

[Hidden in reply to Dayatatime]

I like your style Dayatatime..😎

[Harry_B in reply to Dayatatime]

I so appreciate your thoughtful commentary. I'm going for a knockout multi-mode approach even though I have Gleason 9, three bone mets and lymph node involvement. PSA responded to docetaxel and ADT going from 58 to 0.05. Steroetactic radio follows. Best, Harry.

[paulparry in reply to Dayatatime]

How do I check your profile?

[Dayatatime in reply to paulparry]

If you want to check out the history of any member just click on their profile name. The other option is to go up top and click member and that will give you the ability to do a search. If it helps the directions are also pinned on the right at top of paige.

[Fdccs]

Thanks for your replies.

Does anyone know why they would stop oral HT and just do injections before radiotherapy? I'm going to call them tomorrow but it doesn't seem aggressive enough

[Dayatatime in reply to Fdccs]

I actually had this same thing happen to me going into it with a PSA of 1.8 and only being on Lupron. I told the hometown doctor I wanted to add Casodex back and he stated he doubted it would go any lower. I got my way and Casodex was again added bringing it down to .51 preoperative. This was the target area I was looking for before surgery. Don't be afraid to question a doctor.

[Fdccs]

I will

They're wanting to start Radiotherapy in 3 months time but aren't even going to check PSA at any point so we're supposed to carry on as normal for 3 months waiting for a letter from oncology

[Hidden in reply to Fdccs]

My first hospital was doing as yours. Called md Anderson and had an appointment in 3 days. Everything changed. Much more aggressive. I’m still on drugs shrinking the tumor with radiation starting in February. Not sure of any outcome but feel better about their treatment. Don’t be afraid to get another big treatment hospital involved. Houston was my second choice because Mayo was closer but they turned me down. Did it myself only armed with my biopsy and bone test. No referral.

Good luck

[Davidl3940 in reply to Hidden]

Why were you turned down at Mayo? I had my surgery at Rochester. I may have to have radiation due to slow rise PSA.

[Hidden in reply to Davidl3940]

I missed this one sorry.

I think because the hospital here in topeka, kansas is related to mayo so they say. It is not in any good way. Mayo told me to seek local treatment. I said bull and ran from those guys.

I’m sure Mayo is a great place. In at M D Anderson in a short period. When you know nothing like I did go for the most experienced. I’m not in love with the lack of time spent explaining what’s going on but I don’t doubt their doing what’s best for me. Anyone whose doctor sits down and explains all the options and details of things to come should thank him every chance you get.

[Ldb01 in reply to Fdccs]

How can they wait three months ? That is too long surely ?

[Fdccs in reply to Ldb01]

Well apparently the injection will be doing its job to stop it in its tracks and then radiotherapy is more effective when the cells are starved

[Dayatatime]

Understand that your husband is not only being treated but he is also part of the treatment team. Read, learn and be your own advocate. I can not even begin to tell you how important this is. Your input matters and when speaking from an educated stand point doctors are more willing to listen. I have learned through my own experience and from posts on this site that sometimes it takes taking things into your own hands and making them happen.

[Hidden]

Depending on where one lives, tumor burden, strength of body, early intervention, what choice of treatment, skill of the medical oncologist, positive attitude, and prayer, Stage 4 metastatic prostate cancer can be cured. I am fourteen years into this journey and was able to stop Lupron in 2010. I am still being following in a clinical trial. PSA is undetectable and bone scans are clear. Yet, I guess the bastard could still rear its ugly head, but I don’t think so. Don’t give up. According to the available statistics in 2004, I should have been six feet under by 2009. Perhaps it’s only a matter that my life’s work is not yet done and our Creator has given me a reprieve.

Gourd Dancer

[Fdccs]

Thank you. I really hope so, my husband is the most important person in the world to me and my absolute rock. They are talking about a cure at this stage but GS is 9 with pelvic lymph node spread

Hope you continue to do so well

[dmt1121]

I understand your confusion, having gone through something similar myself. After I had my RP, one out of fourteen lymph nodes was positive. I was told that it was "possible" to cure me but there was no certainty. In my case, my MO and I decided to follow a stampede study protocol that uses docetaxel with Lupron as a systematic treatment to try to kill off any remaining PC cells that might be present. My PSA went to .01 and then became recurrent after seven months (at which point they tell you the disease is manageable but not curable).

I hope your husband is one who will beat the odds! "Never say never" but have realistic expectations, to be prepared to continue with other treatment options if necessary.

Good luck!