NO Title just an intro.: Hi, I am new... - Fight Prostate Ca...

Fight Prostate Cancer

2,789 members1,017 posts

NO Title just an intro.

Xfire profile image
26 Replies

Hi, I am new here, from Southeastern Massachusetts. 58 yo. OpenRP October 2017.

Written by
Xfire profile image
Xfire
To view profiles and participate in discussions please or .
26 Replies
Steveo3312 profile image
Steveo3312

I am from Plymouth mass

Currently going through proton therapy up in Mayo Clinic Rochester Minnesota

Xfire profile image
Xfire in reply to Steveo3312

Hey Steveo3312, I'm from Somerset, MA. Minnesota is quite a hike! The travel must make everything harder. We had lunch at Issacs last week. I wish you the best up there.

Steveo3312 profile image
Steveo3312 in reply to Xfire

Thanks,

I sure do miss the ocean.

Xfire profile image
Xfire in reply to Steveo3312

You missed a good storm yesterday, still going on kinda. I hope your family is safe.

Steveo3312 profile image
Steveo3312 in reply to Xfire

I live in Central Illinois now most of my family is gone from Plymouth area but I do see you guys are getting hammered strange.

Xfire profile image
Xfire in reply to Steveo3312

My daughter is in Champaign, professor at u of i

Steveo3312 profile image
Steveo3312 in reply to Xfire

Yes I'm about 20 miles west of there I live in a town called Bloomington Normal Illinois their doing some exciting things with cancer down there and champagne with nanotechnology.

Xfire profile image
Xfire in reply to Steveo3312

I have been to Normal and Bloomington. I am pretty sure I remember my daughter saying something about a nanotechnology program. I lost 2 big pine trees last night. Sadly you can see into the yard now, no more skinny dipping here!

Steveo3312 profile image
Steveo3312 in reply to Xfire

I am sure the neighbors will appreciate that :)

Xfire profile image
Xfire in reply to Steveo3312

Their problem now! I cleaned up the trees , told them they will have to keep their eyes closed in the when the pool is open.

Hi Xfire, I am intrigued. What do you mean by OpenRP?

Xfire profile image
Xfire in reply to

Timz, open RP is a radical prostatectomy, where they slice you open rather than robotic or non robotic laparoscopy.

Dr_WHO profile image
Dr_WHO

Welcome! Could you please share more of your information? In addition to open surgery, what was your Gleason score, and what did the pathology report state? Did they remove any cancerous lymph nodes? Are you on ADT or any other therapies? How are you dealing with the side effects?

For example, I had a Gleason score of 4+4, 4+4, 4+3 (the three most prevalent ones), T3N1, Stage 4A (used to be called Stage 4D1), Ductal Prostate Cancer (very rare). I had DaVinci surgery where they also removed cancerous lymph nodes. That was followed up by 38 rounds of radiation. I am currently on Lupron and Zytiga (with prednisone). Almost two years later I still go through a pad a day, and have the usual side effects from radiation and hormonal therapies.

Let me repeat myself, welcome! You will never find a better group of people! You are part of our extended family. After all, people like us we have to stick together!

whatsinaname profile image
whatsinaname in reply to Dr_WHO

Very briefly, Dr_WHO, what indeed are the side effects of radiation and hormonal therapies ? I am aware of 1) incontinence 2) impotence. Any other hassles/inconveniences ?? Many thanks in advance.

Dr_WHO profile image
Dr_WHO in reply to whatsinaname

Here is what I personally have experienced.

Radiation:

1) Recovery from incontinence do to surgery stopped with radiation

2) Infrequent blood in stools

3) Slight bowel incontence

4) Temperary major fatigue towards the end of radiation. Recovered in about a month

Hormonal (Lupron, Zytiga with prednisone)

1) Fat gain (>20lbs), muscle loss

2) Joint pain, muscle pain

3) Major fatigue (sleep/nap about 13 hrs a day)

4) peripheral neuropathy

5) Hot and cold sweats

6) “Lupron brain”

7) Hair loss over body (but hair on top of my head is thicker)

8) Mood swings and (minor so far) depression

9) No effect on bladder or bowel inconvenience

10) Between surgery and Hormonal treatments I am a eunuch

11) Man boobs which are now large enough to require surgery (but probably will not get fixed. I am done with surgeries)!

All that said, miles on my bike and went on two Caribbean scuba trips. The side effects are manageable.

whatsinaname profile image
whatsinaname in reply to Dr_WHO

Thanks a ton, Dr_WHO. Gratified to hear that you are overall in good shape. As regards the sex part, its highly over-rated to start with, in any case (my considered opinion, not sour grapes).

Thanks again, much obliged.

Xfire profile image
Xfire

Hi dr_WHO, I Will have to get back to you later on this one. I don't have the numbers in my head. The cancer was found early and while it was close to the edge it was contained....that is, unless it wasn't. Thinking back I remember a G 6 that changed to G 7 after the surgery. I am fortunate at this point , still I am only 5 months out. No lymph nodes, it was contained as I said earlier. The Dr and whole group, which Has been around for years, has disappointed me in the long run and I am looking into another practice. They give absolutely no support. I have given THEM information pertaining to support groups etc. Later tonight I will drag out the numbers and send them out to you.

in reply to Xfire

I think people on here generally give out the numbers if they want to and you can get feedback on them if they're concerned about them. G6 going on G7 sounds OK to me and if you're OK at this time that it's not advanced, don't really yet need to know what might happen if it spreads or recurs.

It sounds more like you're concerned about the after effects of the surgery and the information your doctors are, or are NOT giving you. I find there are questions that aren't always answered by the medics and sometimes even questions that you didn't even know you should ask.

I asked about OpenRP as I didn't know if open surgery was still done and was curious about why you had it.

Xfire profile image
Xfire in reply to

My own little research. Seems to me that men with robotic tend to need follow up with radiation and or hormone therapy. Where as men with open do not.

There are other surgeons in the office that will do robotic, so it was offered up as a choice.

Grumpyswife profile image
Grumpyswife in reply to Xfire

I would like to know more about your research regarding open v lap.

Dr_WHO profile image
Dr_WHO in reply to Xfire

Well with the information you have there is good news. Generally speaking a Gleason score or 7 means that they can fight to totally cure you. That is very good news. Try to find out what the sub numbers were. Gleason scores are based on two readings, ranging from 1 to 5 from your biopsy (or pathology report). The more prevalent in the sample is listed first. For a G of 7 you can have either a (4+3), which is worce than a (3+4).

In any case, while you will probably need additional treatments they have a very good chance that they can cure you! Great News!

Walt (a grumpy retired chemist not a MD)

Xfire profile image
Xfire in reply to Dr_WHO

That is funny. My nick name is grumpy! That is what my grandson calls me.

Xfire profile image
Xfire in reply to Dr_WHO

3+4=7

Involving L+R side apex to base.

Seminal vesicles neg.

Perineural invasion present

High grade PIN

Dr_WHO profile image
Dr_WHO in reply to Xfire

There is good news there. A Gleason of 3+4 means that the predominant Cancer is “3” with the minor one being “4”. It means that every discussion with your medical team should focus on curing your cancer not Palliative care. In fact, perhaps you are already there.

Please make sure that they address the perineural invasion. There is a chance, repeat just a chance that some of the cancer cells are invading the nerves by the prostate. Hopefully they removed them when you had your open surgery The high grade PIN is not cancer, but a precursor to it. Most men over 50 have some grade of PIN.

Walt (like you grumpy but not a MD)

in reply to Dr_WHO

Let's be positive here! Whether or not you need further treatment depends on your PSA. You should have it tested initially every 3 months for maybe a year, then six monthly. It should be undetectable. If it stays undetectable, no further treatment is needed.

As for the perineural invasion, there is a possibility that cancer cells have grown along the nerves. I had perineural invasion myself. BUT it still depends on PSA levels.

What is more relevant at this time is, did the surgeon remove the nerves as well. This used to be routine with open RP. Do you know? If they did, then it increases the likelihood that all cancer cells were removed.

However, if the nerves have been removed or badly damaged then it is highly probable you will suffer permanent erectile dysfunction. Did they tell you that. If the nerves were spared it's likely you will still be impotent. How permanent it becomes depends on erectile rehabilitation which if this is a concern for you, you should start NOW!

Fair enough, I had a laparoscopic RP 6 years ago , no radiation, no hormone therapy. But if you were given a choice and felt sufficiently informed, that';s OK. I didn't want to think you'd not been given an alternative.