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Shocking PSA = 30

netzacat
Posts: 1
Joined: Aug 2009

Dear all,

I'm writing in a state of shock and something very close to desperation. I am not the actual sufferer of prostate cancer, it's my husband who got these results: PSA = 30, Gleason = 7, no methastasis, no evidence of dispersion to any organ, bones included, according to computed tomography and other scannings.

PSA results have been high for a number of years, but biopsy results have been negative, until the last one, which tested positive: now it's cancer. It has not come as a total surprise, as we knew it could happen at some point, he is 67 and has had prostatitis for around 5 years now. The total shock is that the last doctor has treated him pretty much like an emergency, he reckons that ANY PSA of over 10 is indicative of cancer, and should therefore be operated on; that the previous negative biopsies were not real negatives, that they missed the tumor, this is why they tested negative; that total radical surgery is the only apropriate treatment, without nerve sparing; and that it probably expanded already, implying we are wasting precious time. He is a urologist and a surgeon.

Imagine the shock, there's the obvious implication that time has been wasted, and to top it all, he informed us that after radiotherapy there's no chance of surgery, as region is "charred" according to his description, and too damaged to sustain surgery.

This contradicts the CT results, which show an enlarged but not monstruous prostate, and no evidence of dispersion ("clearly defined"). Doctor maintains that studies don't have the level of detail necessary to say so.

Has any of you gone through something similar? Any advice will be so appreciated!

Thanks in advance,

Netzacat

Lindorf
Posts: 11
Joined: Apr 2009

Net:

I have many similarities in my case. I had high PSA that rose up to 26, as it was followed over 2 years. My first biopsy was negative. It was a big shock when the second one came back with 4+3 Gleason, after looking at the Partin tables it seemed to me to be dire. After getting several opinions, I decided on surgery, open radical prostetectemy. This seemed the best to me as I wanted the cancer out. The success rate of radiation is close but surgery seemed the way to go for me.

It turned out to be even more adverse after my post op pathology with a 4+3 and tertiary of 5 and a positive margin. I will be doing Radiation Therapy in addition as an adjuvant therapy. I must point out that my post op PSA is undetectable and I have recovered fully from my surgery in May and I am very optimistic that I may be already cured.

I am sure you feel great preasure and it is all very frightening. One thing that all my medical team pointed out was that this is a generally slow developing cancer and that though someting needed to be done, there is time enough to make an educated decision.

Finally I would say that education is the key. There is no single treatment or approach that is followed and successful for all. You should have a look at the many possibilities and be ready to choose, if with advice, in a way that seems best to you and your husband. Additional opinions can be confusing but are most important.

Do not despair, instead take action.

I wish you the best,

Harry

Peter51's picture
Peter51
Posts: 29
Joined: Nov 2004

Hello,

I am sorry for your husbands diagnosis of prostate cancer and for the duress that your are both now under. I agree with Harry that you should pursue more information and consider all your options before committing to the first one presented. Everyone's case is different but I have some similarities also.

Though not as high as 30, my PSA was 13.6 and considered fairly high also. I felt that I missed a year due to a "negative" biopsy as well. My prostate was triple in size to a normal one. My first urologist was also a surgeon and strongly suggested surgery by himself also. I respected him and his opinion but I wanted to carefully examine my options and get additional opinions. In the end, I had radical prostectemy by a different doctor, a leading specialist in prostate cancer at Mass General, Francis McGovern. The net time delay was merely three weeks. It is now five years out and I have no signs of cancer and still have a PSA of 0. I will forever be satisfied that I didn't waste time but took enough time to explore and compare more options from a variety of specialists. An additional expert that I saw during that time was a top radiation oncologist at Mass General. He thought sugery was better in my case and would also probably help with the frequent urination issue that I had been dealing with. My first Doctor was young without a lot of experience, he didn't volunteer that at first, only that he was a surgeon that did this proceedure. He confessed he had only been doing it for three years and only three or four times each year. Maybe he will be a great surgeon in the future but I didn't want to be part of his education. The doctor that operated on me had been doing radicals twice a week for 22 years.

I know that cancer is a fickle thing and should not be taken lightly but you might just consider that the first negative was due to the possiblity that the needles missed it since it was small at that time. Your husband may likely fall into the catagory of "early detection" and yet have an excellent outcome. Try not to despair. I don't suggest you stall in treatment just encourage carefully considering your other options and compare each of the possible outcomes and side effects. Remember that prostate cancer is generally considered a slower developing cancer and many men who are diagnosed with it often live long enough to die from some other issue. I was 50 years old at the time of my diagnosis and felt that even in slow developement, I might perish from it so wanted to act.

Remain clear in your approach to treating this and good luck. Please feel free to contact me.

Peter

fjessup
Posts: 6
Joined: Dec 2009

Dear Peter51,

I don't believe I've written you yet; please forgive if I have - so much info processing this all gets to be confusing after a while. I am imminently considering surgery with Dr. McGovern (especially because of hydrodissection technique he now uses) or Jerome Richie at Brigham (senior, long reputation also, have been treating with, but no hydrodissection). I am Gleason 7 (3+4) 3/12 cores (1/12 Gleason 6) diagnosed in August 2009, and have really waited too long due to research and just anxiety about doing procedure at all, doing best treatment, etc.; but if you still read this list, I'm asking if you have any further info/opinon on Dr. McGovern (or Dr. Richie), any info on hydrodissection technique and results (e.g. other friends you may know who have used McGovern recently), etc. Hope your status is still good(?), assume so. Any info or thoughts would be appreciated as soon as possible. Thanks, FJ

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

My psa was 24 and gleason of 9. Of course the urologist recommends surgery. Mine did not and for that I respected him. He took the case to a tumor board and the best result was to be the use of one shot of Lupron followed by 40 radiation treatments. I was 52 when diagnosed and am now 58. The radiation killed all the cancer in the prostate which was confirmed by a follow-up biopsy last winter. My cancer had spread and so I'm still dealing with it but that was to be expected and I do not let it worry or stress me in the least. Just keep on doing what you love to do and get the stress out of your life,

Bill91101
Posts: 59
Joined: Apr 2009

HI 2ndBase,

I thought I was going to be getting Lupron, but I got Degarelix instead. Degarelix just came out (FDA approved last December 24th), has some advantages. I get the injections every month, instead of every four months that Lupron is used at (I think). I also got the 42 radiation treatments (IMRT). I feel great! My psa went from 89 to 2.2. My Gleason was 3 + 4.

Glad to hear you are doing well. Thanks for the uplifting message!

Bill91101
Posts: 59
Joined: Apr 2009

HI Netzacat,

I'm going through PC treatments now.

I am 55, four months ago, when I was first diagnosed, my PSA was 89!!!! (eight-nine); Gleason was 3 + 4. Surgery and chemo were not an option. I am at Stage three-

I have been getting Degarelix injections on a monthly basis and IMRT radiation therapy that just finished (42 total sessions).

Bone scan showed nothing.

MY last PSA was at 2.2!! This drop was due to the radiation and the Degarelix injections I have been getting. I might be down to around 0 right now, I wonlt find out until next week.

I feel great. My oncologist is very positive; I see the urologist next Friday.

I can't argue with the concerns of the doctor- I know they like to be extra cautious.

The radiation treatment I had was IMRT (Intensity Modulated Radiation Therapy). Vantage Oncology group (see their website). Check them out- or call Loma Linda hospital in Southern California. My dad went there and got Proton beam 12 years ago and he has been fine ever since.

Take care!

Hope this helps!

nymets1
Posts: 26
Joined: Sep 2009

Netzacat,

Do your homework. While some of your 30 psa may be attributable to prostatitis, it may actually benefit you to go on a prescription of antibiotics so that you could see your true psa. Now I am not saying that your true psa is going to be much lower but it may help you in making a choice.

With a relatively high psa, believed to be largely organ confined, surgery may NOT be your best alternative. Both radiation and cryo can kill areas near the prostate and may be better alternatives. And there is a salvage backup to radiation, which is cryo, while cryo has salvage backups of both radiation and cryo.

So many men get the surgery and the bad news comes...."you have extracapular pentetration or you have a more aggresive cancer than thought"....and then immediately the salvage light goes up. If in doubt, you may want to go with something that may not necessarily require salvage. Of course, they have their drawbacks, too, the main one being that not all the prostate may be killed or frozen.

Let me put this in a better frame:

Low psa, low GS, organ confined (?)....surgery is best
High psa, high GS, organ confined(?)/adjacent areas detected....surgery is likely not be best
Somewhere in between......more weight given to surgery, the better the initial diagnosis.

BTW: I put a question-mark next to organ confined because no one knows for certain unless the cancer can be actually seen away from the organ. The higher the psa and GS, the better chance that some cancer cells have escaped the prostate into nearby areas.

William Parkinson
Posts: 60
Joined: Oct 2009

In general, the best chance for a cure is with some form of external beam radiation with a so-called brachytherapy 'boost' to the prostate. In addition, androgen ablation should be added also. Together, all three offer the best chance of cure and if it has spread, then the best chance for doing the most to add years to your husband. I wish you the very best luck!

mcdcc
Posts: 4
Joined: Oct 2009

Dear Netzacat
-I was diagnosed with Prostate cancer over two years ago. At the same time my associate in my office was as well. He went to Mayo in Phoenix and had the Da Vinici Prostatic Surgery performed. I had seed implants done.
Two years later I am experiencing a bounce in my PSA from .5 to 32! I am in the process of going through more tests and am at the point now of having a new biopsy as the other tests are all negative. My prostate is swollen, so make sure that you talk to your Dr. about chronic prostatitis and the possibility of it returning after seed implants. He will still have a prostate and prostatitis is not prostate cancer.
I understand why I made the decisions I did and I think everyone has to make their own for their own reason but I would look at getting a team in a prostate specializing institution to do a full examination and give you your options.
My associate is doing very well.
Once agin please consult you Dr. about the possibilities of recurring prostatitis after different treatments besides surgery. It is not a problem with surgery as the prostate is gone.
Take a breath, do your homework and do it.
I wish you the best.

Jamee19
Posts: 1
Joined: Feb 2010

My dad's PSA is 153, it is very high. One of the highest the dr.'s seen. He was just told the news a few weeks ago. I am not sure what to expect either. Hope someone can help me

Herc
Posts: 1
Joined: Jun 2018

Hi i am 50 just been diagnosed with prostate cancer stage 3. Psa 34 gleason 7 ( 3+4). Hasnt spread but is on border and bulging on one side. 

I understand its a slow growing cancer and want to and waiti g to get another opinion but how can one find out what is a good time in to which to get it treated or to maybe go trying to cure ot naturally as i heard people have with strict diet etc. Any ideas or info . Pmease feel free to speak your mind

 

VascodaGama's picture
VascodaGama
Posts: 2958
Joined: Nov 2010

You may get more attention on your request and answers if you start your own thread.

You are worried and want ideas but you need to be more concrete on your questions. From what you describe here I think you want to know if you can go holistic to hold the bandit on its truck. My comment is yes but it may not be the best choice to handle your condition. Can you share more details on your case. Did you have any image exams to certify the "bulging"? What about the PSA, is it high? Can you reproduce here a copy of the pathologist's report on the biopsy?

I was also diagnosed with prostate cancer when at 50 yo back in 2000. We cannot use my case to serve as example for you but we can compare to draw ideas. In the end the treatment most adapted to each case (surgery, radiation, hormonal, etc) is equally administered independently of each one's particulars. Holistic therapies have never been related to cures. Radicals are the ones that can provide cure. Which one are you looking for, a radical or a palliative?

Welcome to the board.

Best wishes and luck in your journey.

VG

Grinder
Posts: 437
Joined: Mar 2017

Herc... you may be referring to "The Cancer Diet" that naturopathic, holistic, and Ahmish doctors have used with some success against certain kinds of cancers. It usually excludes ALL meat and dairy products and sugar, and has a strict regimen of certain raw vegetables at certain quantities at highly regulated intervals. You CANNOT use a microwave, or even be in the presence of one.

If I remember correctly, it is a 6 month regimen that CANNOT be altered at any time.

I have a close friend who was put on that diet by an Ahmish "physician" (?) and she successfully survived kidney cancer, though she was bedridden at one point with a tumor the size of a football in her side. But she stuck with it and survived, and the cancer is gone, but she is in dialysis because her kidneys suffered too much damage.

She gave the diet to a mutual friend with breast cancer, but the friend did not stick absolutely rigidly as was necessary, and the cancer metastasized. When she tried to return to a strict regimen, it was too late, and she passed away... It was a terrible tragedy for all as she left behind a daughter whose father, a good friend of mine, had died in a car accident some four years before.

Why am I telling you this? Because if that is the diet you are referring to, it  is a very difficult regimen to correctly follow. Secondly, Prostate Cancer cells are a whole different animal from other organ cell mutations. I cannot say that the Cancer Diet would be an effrctive way to treat it. I can say that Prostatectomy or SBRT and other conventional treatments ARE effective methods.

I had the option of The Cancer Diet... but chose the DaVinci Prostatectomy surgeon and I am 100% fortunate that I did. But I have to warn... I got the best surgeon available.

This is only my opinion, but every word I just told you is true to my knowledge.

 

Some edited addendums... that diet also prohibits fish of any kind... ONLY plant protein, and only raw. Nothing cooked, nothing processed or canned or frozen, period.

Also, the prostate is a unusual cancer for several reasons... for example...

- the prostate, as a gland/organ is rarely used... sometimes never in some cases... unlike almost all other organs and glands being used 24 hours a day. 

- the prostate can be removed or destroyed. Pretty much all others are life sustaining and must be replaced or compensated by medication or even mechanical operations like dialysis.

-  Prostate cells are notoriously slow growing and replicating, stimulated mostly by androgen reception. Other organs have faster apoptosis/replication activity... except for bone cells.

- Prostate activity can be gauged by PSA antigen nanograms/ml. making the prostate cell activity trackable.

- Because the prostate is unecessaey for QOL, it can be removed or destroyed, making conventional treatments MUCH more desirable than treatments used for other types of cancer... when  caught and tracked early.

This is all my opinion, just so you know, but since the prostate can be easily treated conventionally, I cannot see why anyone would want to risk the Cancer Diet for prostate cancer... maybe for other cancers, but not PC if caught while the cancer is contained.

 

Clevelandguy
Posts: 415
Joined: Jun 2015

Yes I think if there was any clinical proof that diet could arrest or cure PC many of us here would have went down that path.  I doubt if there is such a cure. The Amish diet I did find online seemed like a good healthy diet of fresh fruit, grains & veggies but I doubt if it could cure cancer. Unfortunetly about the only things that work are surgery or radiation.

Dave 3+4

Grinder
Posts: 437
Joined: Mar 2017

I think there is a difference... not that it matters.

The Ahmish Diet is what Ahmish recommend as a generally healthy way of life.

The Cancer Diet is a strict regimen where the contents of every meal every day is preset, and even the amount of each item is weighed. For six months you ONLY eat what is written down, and you can only prepare it the way prescribed, and the exact amount prescribed. Any departure from this preset guideline risks failure.

I have a copy of the instructions somewhere. If I find it I could post it...But I am reluctant to post it if someone would use it for prostate cancer on a fool's errand.

Of course, you can never eat out, or even eat at someone else's house, unless they prepared your food exactly as the cancer diet prescribed for that day and that meal.

I am reluctant to post it if I found it, because Yv___ thought she could do it, but just could not take its strictness seriously enough. 

I may have forgotten to mention this... You cannot take any medications during that six months and no conventional cancer treatments either. Not even pain medication.

Why dont we leave it at this... Forget The Cancer Diet when treating Prostate Cancer. There are too many useful conventional Treatments that work to take the risk.

If anyone recommends a healthy diet, like the Ahmish diet, by all means that should be employed as it will enhance the immune system. But if it is "The Cancer Diet" I personally strongly recommend against it for PC just from the experience of friends.

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