CSN Login
Members Online: 18

survived with these numbers?

Lindorf
Posts: 11
Joined: Apr 2009

I was just diagnosed March 19.

Got 4+3=7Gleason cancer in 6 out of 9 cores PSA 26 Clean CT and bone Scan PERINEURAL INVASION PRESENT

When one reads tables the outlook is pretty grim. I am wondering if anyone had similar numbers and what they chose for treatment.

ismetals's picture
ismetals
Posts: 70
Joined: Feb 2009

I can't remember what my exact psa was but the other numbers were right up my alley. I did have a pronounced bump on one side. I chose the robot. My doctor was able to spare the neerves on one side. I'll be getting my 6 mo. checkup next week. Since the op i have had no unusual problems with contenace. In fact now I have no problems at all. Rrections are improving with help from Viagra and sometimes even without. I would rate them at 60% not good enough yet but better than nothing. I am 60 yrs old and now feel great.
Good luck with whatever choice you make. This place is a blessing to us all. I just wish I had known of it before my op.

tonybear
Posts: 92
Joined: Mar 2009

i had brachy therapy with tomo radiation. i am not sure what your age is but i am 54. what i had is not a quick treatment, but my doctors numbers for success are 98% and his side effects are 1% to 2%. the wife and i picked the radiation route because of the reduced chances of side effects. i just had my 6 month and everything looked good. i was treated at the cancer treatment centers of america. whatever you choose check out the short term and long term side effects, and the recovery times. don't be pressured by the doctors into a quick decision. god bless. tony

RICH69
Posts: 4
Joined: Feb 2009

I was diagnosed in Sept. 6 biopsies with gleason score of ten in all samples. Have been on hormone treatment the last 6 months to shrink the tumor and am scheduled for robotic sugeru May 4th w/ radiation treatment after that. Cancer has not spread to the bones so Dr's feel good about complete recovery.

2ndBase's picture
2ndBase
Posts: 220
Joined: Mar 2004

I was diagnosed at 52 with psa of 24 and Gleason of 9 and got a second opinion at which a highly respected urologist gave me a 50% chance to survive 2 years and a 2% chance to live 10 years. I was 52 then and will be 58 in a week. It was well assumed with these numbers that the cancer had already spread and that taking the prostate out would not be an option. I received only one shot of Lupron and had 40 radiation treatments starting about a month later. I credit my survival to a very good treatment choice and mostly the fact that I eliminated all the stress in my life. I only work places I enjoy and play a hell of a lot of golf. I make very little money but have never been happier. My cancer is still there and my psa is rising again from .17 after treatment to 4.6 about six months ago. The side effects are exactly what they will tell you they will be and hopefully no worse. Fatigue is actually my biggest side effect today, so I've been doing pretty good. I have not decided whether or not to take more hormone treatment or chemo as time goes on. Your mental attitude and lifestyle must be positive to have a good survival, but that is true for people that don't have cancer too. My wife and I are going to Hawaii in 2 weeks. Life could not be any better.

Lindorf
Posts: 11
Joined: Apr 2009

Thanks everyone for the most useful and encouraging words it is unbelievably helpful to hear from men who are going through this as well. When one reads the different tables based on my numbers you would think it is all over already. I have my meeting with my Urologist, William Catalona, tomorrow. Since he is a surgeon I expect that he will recommend RP, as this is his area of expertise. It appeals to me based on what I have read, but I am sure to get an opinion from someone else in a different field, perhaps radiation oncologist. In any case, it is most heartening to read that there is reason to hope, and I will continue to be upbeat. Thanks.

Joe_Ballard
Posts: 5
Joined: Apr 2009

Good luck to all of you.I got my Prostrate cancer at 55yrs old. went through radiation for 42 days and my PSA went down to 0.15. 16 months later it came back with a PSA of 5, then rose to 9 within 1 month. Bone scan showed it went out of the Prostrate, and has gone to my hip bone. Now I have 4th stage bone metastasized cancer. Chemo was the only way to go at this point with a life expectant of 2 to 5 yrs. Since the PSA stay around 7 to 9 in the last year,and bone and CT scans every 3 months there has been no chemo as of yet. In Jan. the PSA started to rise again. Last month it was 19, and as of Monday it went to 30.

Now they want to start the chemo asap. They tell me 6 to 12 treatments. The chemo will not cure me. There is no cure for the bone cancer. I'm 58 now, and the Event Chairman for the first ever Relay For Life in Oakley, Ca. I start my chemo on 4/21. Week and half before my Relay. I will be there no mater what. They never told me that the chance for the cancer to come back after radiation was 85%. Only 38% live past 5 yrs. I plan to be in that 38%.

RRMCJIM's picture
RRMCJIM
Posts: 149
Joined: Mar 2009

Joe, I can hear in your determination that you will be in that 38%....what were your original numbers? I have finally got a firm date for my Da Vinci surgery, it will be July 31st. I know this is the only route for me to go. I will only know for sure it is all out this way. Looking forward to start the next chapter in my life. I spend so much time in the water, on vacation, either wind surfing, diving, or "hey they have a swim up bar"???? I can hide the incontinence....lol good on ya....later

HUNTERS555
Posts: 1
Joined: Apr 2010

Hello Joe, I am the wife of a prostate cancer survivor. We (this is how I think of us) are into our seven year survivor term.) PSA never went to zero. After surgery w/radiation we went to 0.01 Now seven yrs later it is .32. Drs appt next week. Then keep telling us not to worry. Are you kidding... We are trying to live a natural life. Fl in the winter Home is the summer....What questions should we ask the Dr.

kreinholt's picture
kreinholt
Posts: 35
Joined: Mar 2009

Lindorf, I had similar Gleason scores as you. I was 3+4=7 in two samples and opted for the De Vinci robotic procedure. Easy procedure, quick and painless recovery. Had my first PSA read yesterday and I am happy to report that it was .068. So far, so good. Next one in three months.

Lupronized
Posts: 6
Joined: Apr 2009

I was diagnosed in May, 2005 by CT-Scan after urinary obstruction and PSA of 750. Since I was already on Proscar and then Avodart, the PSA has to be doubled, meaning it was effectively 1500. I never had a biopsy, which I think was a good thing.

There is very little information on the Internet about PSA numbers this high. I have learned that it means the cancer has left the prostate. In my case there were tumors in the central abdominal lymph nodes up to my diaphragm, but no bone mets whatsoever.

I was put on 4-month Lupron and am still on it. PSA plummeted to 0.2 and stayed there, but after 18 months began to rise again, caught at 5.6. After about six months I ended up with an oncologist who immediately put me on Casodex 150mg/day, which my urologist had refused to do when the Lupron failed. The Casodex, which is usually only effective for 2-3 months in this situation, brought my PSA down again for about one year, then it, too, failed.

Then the pain began. Abdominal pain. Severe at times. The oncologist prescribed mild pain meds that were only minimally effective. I went through this for about six months, with several trips to the ER and a 5-day hospital stay for intractable pain. Toward the end of this I ended up with a different, much better oncologist. Eventually the pain meds got sorted out to correct types and dosages, and I started on chemo.

Pain meds and stool softener eventually got me to a stable pain situation about the time I begain chemo. The stool softener required some experimentation to get the dosage right and not have the runs all the time.

It was in these six months of pain that the bone mets appeared. They became extensive.

Chemo was to be six infusions, three weeks apart, consisting of Taxotere and steroid, and the bone strengthener whose name escapes me at the moment. The infusions begin with an antu-nausea agent, then the Taxotere, the steroid, then the bone strengthener. I also have to take a steroid for the three days around the infusion, and Prednisone every day all the time. I return the day after the infusion for a Neulasta shot to stimulate blood cell production.

I have had three chemos so far. All have been uneventful on the day of the chemo. The first resulted in bone pain several days later, which lasted for a few days. I'm told that is from the Neulasta shot. Aside from that passing pain, my first chemo resulted in a noticeable increase in well-being and energy. For the first time in a long time I was able to be more active in work and to concentrate on things and get things done. My oncologist was very surprised that I seemed to have gotten noticeable benefit from the very first chemo.

The second chemo resulted in an awful case of thrush, a mouth/throat yeast infection that is painful and makes eating difficult or even impossible. The doc prescribed Stomafate Plus, an oral solution, to relieve symptoms. That came a little late, and was only partially effective. Thrush makes one miserable and makes any food taste like alien stuff from another planet.

The third chemo resulted in terrible weakness beginning two days later, and another round of thrush. A coincident overmedication for diabetes and hypertension, resulting from 50-60-lb weight loss over 18 months, led to my blood sugar and pressure crashing four days after the chemo, almost killing me, but I can't blame that on the chemo. Nevertheless, the week or two following the third chemo were the worst of my life, with as close to zero quality of life as I can imagine short of being completely bedridden. I lost most of my vision and couldn't walk. That mostly cleared up in a few days with discontinuance of all my diabetes and hypertension meds, but a week later I am still mostly nonfunctional, barely able to get around the house and go to the bathroom, bathe, and feed myself.

Another complication that arose was shortness of breath, which appeared one week after the third chemo when I went in for blood workup. For the first time ever, my blood oxygen at that visit was 83%, which was consistent with the shortness of breath. I have O2 at home in case of need, but it didn't help at all. The shortness of breath lasted for a few days. It was miserable. Totally, completely miserable. I've cut down on smoking, ordered a pulse oximeter on the Internet to monitor my blood O2, and am trying to take a walk each day to build myself up.

At this time I don't plan to continue with the chemo. I have another couple of weeks in which to decide.

jimbeam50
Posts: 47
Joined: Oct 2008

My husband was diagnosed almost a year ago at 57 with PA. Initial PSA was 5700 and when diagnosed it had already metastized to his bones. While on casodex his PSA decreased to 67 and after 6 months the casodex stopped working and his PSA went back to over 2,000. Now he is receiving chemo and taking another hormone nilutamide. I won't say he's terrific but he is doing okay. He is eating well and gets around but is very, very tired. We realize he is "advanced" but we feel that as one thing stops working there may be something else to use and we will keep going. My husband also gets a Zometa treatment every four week for his bones. I am going to have to check on his blood oxygen level now because my husband is experiencing shortness of breath. My husband has been very lucky and is experiencing no side effects from the chemo but he is in a lot of bone pain for about three days after the Zometa treatment. Wish you all well. Sheila

erisian's picture
erisian
Posts: 109
Joined: Dec 2008

My PSA was 798 at diagnosis, with bone mets. Since then, it has ranged from 0.4 to 186. In January, I started Round 4 of chemo, 'Low-dose metronomic' cyclophosphamide (CP). It's a daily pill. I'm on a steroid too, and I'm seeing more side effects from the steroid than from the CP. The low-dose CP actually improves immune function instead of wrecking it. The CP treatment caused my PSA to drop from 164 to 113 in three weeks, over 30%.

If the side effects are making you quit, ask your doctor about changing to a weekly cycle, using a third of the three-week dose. I had that when I was on paclitaxel.

The Provenge vaccine will probably get FDA approval next month. I plan to get that ASAP.

wolf
Posts: 7
Joined: Apr 2002

Hi Lindorf,
Yes, my numbers were higher. My PSA was 102.6 on initial diagnosis, Gleason 6. I chose external proton beam therapy at Loma Linda U. Med. Ctr. in California (I live in Virginia) and my PSA is now 0.3 with NO side effects.

I believe that my success is partially due to the fact that I was on hormone suppression therapy for 6 months prior to the radiation treatments. This was fortuitous as I was simply trying to decide what to do during that period. I have since read that this period of hormone therapy prior to curative procedures shrinks the cancer (mine shrunk to less than half the size it was on initial DRE) and, possibly, kills metastatic cancer cells thus increasing the chances of success.

Good luck, Wolf

Lindorf
Posts: 11
Joined: Apr 2009

Just some updates:

I decided on Open RP. Surgery went well. After a month I had full continence, felt well and was nearly ready to get back to work, 4 week PSA was undetectable. At six weeks I am riding my bicycle and pretty much recovered from the experience. Side effect of ED, I am trying injections, nothing at all yet. Post surgery pathology report was 4+3 7 Gleason with tertiary of 5 and a single positive margin, T3a. Due to the negatives of this report I am considering further adjuvant treatment.

Original surgeon who says no adjuvant treatment until biochemical failure, then srt with adt.

2 Radiation oncologists at major institutions say do not wait definitely do ART including a period of ADT before and after radiation. One medical oncologist at this same institution would do the ADT but did not seem as enthusiastic about it.

2 Medical oncologists at major institutions who suggest ART but definitely do not recommend ADT as a part of it.

I have also consulted an "alternative" practice, who do a number of additional supportive things alonmg with the regualr treatments. They are not in favor of the hormone treatment but are for ART

From my own perspective, I see no real useful study showing the absolute value of ADT with either adjuvant RT or Salvage RT, but pretty strong support for ADT with radiation as first treatment. I think much of the support for ADT in the other settings comes from the success in the first treatment setting.

I am now 7 weeks post RRP and my most recent PSA was undetectable. I am inclined to do adjuvant RT as there seems to be a clear statistical advantage to those who do so. Also according to the Radiation Oncologist I would use, he can use a lesser dose of radiation in this setting. As for the hormone therapy, I am less inclined. I already feel that I am risking serious side effects for a 20% advantage, I just do not think I will risk the second set of side effects, all knowing that there is a 60% chance that I am already cured. This is some difficult disease alright.

By the way, the alternative practice has a number of suggestions regarding diet and supplement. The book Life Over Cancer by Keith Block has a lot of this information in it. Also Beating Prostate cancer:Hormonal Therapy & Diet by Dr. Charles Myers may help. I must say that rather like everything else there is some disagreement about some things but there is a lot of good information that is helpful and involves things that can never hurt one but may well be helpful.

Finally most all of the physicians are very positive about the prognosis, all in all a much more hopeful place for me than in April.

L

mrspjd
Posts: 688
Joined: Apr 2010

Lindorf, are you out there? Just noticed Lindorf's post dated 4/7/2009 because of another poster's entry dated April, 2010. My husbands PCa stats were very similar, see my post dated 4/16/2010 (RP vs RT..). Gleason 3+4=7, PNI, 9/12 cores positive w/ many at 100% on rt side. His (pjd) add'l recent testing (prostate MRI) confirmed what we knew was likely, that there is evidence of PCa in the rt seminal vesicle and regional, although the bone scan and pelvic CT were negative. So we have a confirmed clinical state of T3 with a high volume PCa, maybe agressive. psa of 2.26. Have consulted with some of the top doctors (skill, experience, experience). pjd will be making a tx decision soon between open RP vs Radiation (RT) w/hormones as a first line tx. pjd is 67, and otherwise very healthy and fit. How did you arrive at the decision for (open?) surgery vs RT as a first line tx? Don't know what your age is, but wondering if you took the RT after surgery, & whether it was with or without hormones and which ones, and where you had it? Also, wondering, since you mentioned Catalona, did you use him or someone else for your surgery. Most importantly, would really like an update to hear how you're doing today. Thanks.

mrs pjd

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network