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New cancer diagnosis

daniel57
Posts: 3
Joined: Apr 2020

Hi all my name is Daniel and have been recently diagnosed with prostate cancer by my urologist through a biopsy of 12 cores. Here are the following particulars

Age - 62, 63 in May

8/2016 - PSA= 3.8

7/2017 - PSA= 6.31

2018 -   PSA= n/a. No test

1/2019 - PSA= 7.60

1\2020 - PSA= 6.19

Biopsy 3\2020

Prostate Volume = 83 grams

PSA Density = .07

Positive Cores= 4 of 12

GS = 6

Clinical Stage = T1c

Core percentages = RM - 65%, RLM - 15%, RA - 100% with perineural invasion, RLA - 10% with perineural invasion.

All cancer found only on right side

Genomic Prostate Score(GPS) = 40

Pathology a endpoints - High-Grade Disease 25%

Non-Organ-Confined Disease - 34%

Adverse Pathology - 42%

Urologist/Surgeon does not recommend AS due high GPS results, he has done over 1000 Robotic RP Surgeries. He has referred me to Oncologist Radiiologist on 4/17. Kind of leaning towards surgery but want to talk with the Oncologist to see what they have to say. I am concerned about the radiation as I have had rectal surgery in the past and have Irritable Bowel Syndrome D-type (IBS-D) and do not need any more issues with my colon or bowels. Breakytherapy(sp) is out due prostate size. Any kind of advice would be appreciate. Thanks

Daniel

lighterwood67's picture
lighterwood67
Posts: 256
Joined: Feb 2018

Looks like you are doing your homework.  You are on the right site.  I am sure you will get plenty of feedback on AS; surgery; radiation.  Just a little background: Age:  69.  My gleason was 4+3=7;  Based on testing, cancer appeared contained (my understanding, if not contained surgery would only be pallative); RARP 3/18; Current status: PSA undetectable; fully continent; intimate with wife.  Please undertsand what you do is your decision.  My RARP removed the prostate, parts of urethra, seminal vesicles, pelvic lymph nodes, bladder neck reconstruction.  I developed an inguinal hernia 18 months post RARP.  They fixed that.  And maybe I just dealt the cancer a knock out blow.  The folks on this site can give you their experiences with their choices of treatments and then some.  Good luck on your journey.

Clevelandguy
Posts: 552
Joined: Jun 2015

Hi Daniel,

Good idea to talk with both the Urologist & Oncologist and listen to both sides.  If it was me I would also request some type of scan(MRI, PET, CT) to determine the location of your cancer whether its close to your bladder, rectum, close to the edge of your Prostate, ect.   This might help you on which type of treatment you will choose.  With 3+3 you have plenty of time(maybe years) to determine whether you want surgery of some type of radiation.  Do your homework and pick the best doctors and best facilities to get you the best results.  As lighterwood says we have lots of folks here that have had just about every type of treatment so we can all share. Ask lots of questions both here and of your doctors before you decide what to do.  Information is your best ally.

Dave 3+4

ASAdvocate
Posts: 129
Joined: Apr 2017

I reommend that you get a copy of Dr. Mark Scholz' new book, The Key to Prostate Cancer. He interviewed 30 prostate cancer experts, and presents their descriptions of the treatments that they provide for men at different risk levels.

As far as surgery versus radiation, I've have never read any strudy that showed that surgery can match the non-recurremce rates of the two advanced types of radiation, SBRT/Cyberknife and protons. Not even close.

Clevelandguy
Posts: 552
Joined: Jun 2015

Hi All,

Surgery and radiation both have their own risks and side effects.  There are folks here on this board that have had very good & very bad outcomes from both treatment protocols.  The correct treatment for anyone is the one they choose based on the cancer severity/location and their doctor recommendation and their personal choice. As far as stopping the progression of the cancer both surgery and radiation are probably close to equal but the side effects of both types can vary widely.  As a person choosing which way to go you need to understand the pros and cons.

Dave 3+4

VascodaGama's picture
VascodaGama
Posts: 3191
Joined: Nov 2010

Daniel,

Welcome to the board. I have not much to add to above advices but I would recommend you to get a colonoscopy if radiation treatment becomes your choice. All types and modalities of radiation treatment for prostate cancer affect areas in the colon (radiation proctitis/colitis) which could disturb your IBS-D issues. In fact radiation is usually prohibitive in guys with ulcerative colitis. In such regard I hope you get proper answers from the radiotherapist you are meeting next week.

I also think that you shouldn't rush to a therapy without knowing the details and risks involved. Gleason score 6 is the lowest in aggressivity but it should be treated. Get second opinions and formulate a decision together with your family.

Best wishes and luck in this journey.

VG

 

hopeful and opt...
Posts: 2237
Joined: Apr 2009

Your treatment choice is based on the report of the pathologist. There is a difference in the skills of pathologists. Strongly recommend that you obtain a second opinion by an independent world class pathologist.  Johns Hopkins is world renown. Simply  contact your doctor office to facilitate. Your insurance might pay for this, otherwise, I think the cost out if pocket is two to two fifty or so.

 

daniel57
Posts: 3
Joined: Apr 2020

Thank you everyone for your input, I meet with the radiation oncologist tomorrow and will take into consideration your comments/suggestions for questions, after that it will be back to the urologist and suggest to him the MRI and possibly a second opinion. I have been reading a book called "The Decision" by Dr. John McHugh who is a urologist who had a prostate diagnosis of his own and his experience sitting on the other side of the desk. In the book he walks you through a decision making process that is very thorough and useful.

Again thanks and will update as soon as possible

Daniel

hopeful and opt...
Posts: 2237
Joined: Apr 2009

Important to have the MRI. It may show if there is extracapsular extentsion. There are different MRI machines where the Tesla magnets are different. It is important that you specify a Tesla 3 MRI. The Tesla 3 provides the best definition in clinical use, and is most likely to determine cancer outside the prostate, 

By the way Gleason 6 cancers will not leave the prostate, however when there is a lot of 6 found as it appears in your case, there can be Gleason 7 found that can leave the prostate, thus my suggestion for a second opinion on the pathology. It's possible that less Gleason 6 cancer may show, which will influence your treatment choice.

daniel57
Posts: 3
Joined: Apr 2020

Met with radiologi in his office, he explained that I would need hormone therapy before radiation to help shrink the prostat.  After two weeks of hormone therapy then about a month later they would begin radiation IMRT. 8.5 weeks of radiation 5 days a week. Because of my IBS, enlarged prostate and previous rectal surgery he indicated the side effects could be more pronounce. He also said he would be willing to do the radiation therapy as long as I knew the risks going in. I have enough problems already with the enlarged prostate (83 grams) I don't need anymore irratation, same thing with the rectum, had surgery once do not want to do it again. Told the doctor I was leaning more toward surgery but would consider the information he presented me in making a final decision.

Met again with my surgeon on Wednesday as I had a list of questions for our 3rd meeting. After our discussion which included getting a 3T MRI before surgery wediscussed his teams pre op process and post op processes, his surgical team and why he would recommend surgery with my stats. What he said was most comcerning to him was that one core was 100% cancer, one was 65%, the other two were 15 and 10 for the four cores that were positive for cancer, Gs of 6 all for positive cores. The GPS score of 42 was what tipped the scales with him for treatment rather than AS. He said any surgery he has done with a GPS score over 30 has always come back with adverse pathology indicating more cancer than initial diagnosis. So after two months of research and talking with doctors, reading these forums and my own preference I am scheduling Da Vinci surgery for mid July. Dr. S haa over 1000 surgeries with the Da Vinci system and was responsible with one other doctor for raising the funds to purchase the robotics for two hospitals here in St .Louis. Had to go to the ENT for an ear issue the other day and when filling out the paperwork and checking all the boxes for conditions you currently have I scanned past cancer and then realized I had to check the box, it really hit home at that point and been kind of in the dumps for the last couple of days even though my decision for surgery has been made.

Thank you to all the contributors here for their invaluable insights 

Daniel

Lilabit
Posts: 5
Joined: Mar 2020

Hi

My husband who is 87 years old has prostate cancer (enlarged)for several years and Dr.checkups each year.No worries.

Last summer he suddenly started to lose weight without trying and lost over 20lbs over a 2 month period. His doctors regular had him exrayed, scans ,blood tests, and sent to heart doctor, skin doctor (he had melantonim 9 years ago) free of skin cancer and no one could explain his weight loss. My husband was very active, still biking around the nieghbour on two wheels and nieghbours amazed knowing he has age-related macular and can't see well and had knee surgery when he was 85 and came through with flying colors for his age. Went to the gym, no health problems other than the prostate which did not deter his life. The prostate doctor had sent him for tests a while back, but his appointment was in December 2019. In the meantime, his enegry level was low for no reason. My husband thought it was due to his prostate cancer, so before we visited the doctor, research all about prostate cancer, the stages, etc. the treatments.

The doctor told us that my husband's psa went from 24 to 31.7  His gleason score 3,4 for a score of 7.Stage T3B. The doctor did say that the cancer had not spread outside of his prostate. I specially asked the doctor if this stage of his cancer could cause the weight loss and his fatigue. He said no,and said we should take this up with the family docotor. Might be thyroid.Then he said to discuss treatments ( read about those too and it sounds worse than the disease). We decided not to do take treatment and see if I can get to the botom of his state. check back in 3months. The treatment the doctor suggested was hormone therapy and if my husbaqnd would start on that herapy he would be camatose! If the cancer is not causing his weight loss or now he's progessed to extreme fatigue that he can barley wallk and is lying down all the time, then treatment would be worse. He has lost more weight.

His quality of life right now is he can barley walk, bathroom continuously day and night, has good appetite, has to eat 3 good meals, or has upset stomach, does not have any energy to go out anywhere and feels uncomfortable, can't articulate how he feels, does not have pain, just chronically tired And all this without any treatment.

I am trying mega does of Vitamin C, D, B12 and other supplements like zinc, selemium. Looking into super alternative treatments.

Does anybody else who has prostate cancer lose weight and get extremely fatigue without treatment and at what stage? When I reshearched, it stated most men do not have any symptoms of advanced prostate cancr. Is this true and that some tests causes side effects like fatigue that is irrevesrible, is that true?

Also anybody trying alternative therapy successfully?

Thanks for any advice, suggestions and information.

God bless you all.

hewhositsoncushions
Posts: 345
Joined: Mar 2017

Lilabit

George's advice is sound - spin up a new post and put your husband's history in there. Good luck.

Regarding alternative treatments  - there are no "good alternative treatments". There are no "alternative treatments". There is stuff that works to a medically approved standard and stuff that doesn't. Please bear that in mind as you proceed as people get rippied off left right and centre by people shilling miracle cures. That is not to say good diet and supplements may not help but they are not treatments or cures.

Stay well.

Georges Calvez
Posts: 443
Joined: Sep 2018

Hi Lilabit,

Can you start a new forum topic for your husband's problem?
This is Daniel57's topic so it is less confusing if people do not post new problems into his topic.
Copy your stuff and then go to the front page, choose Add new Forum topic and then paste your stuff into the first post.
I could do it for you if you like.
When you have done this we can discuss your husband's case further.
The short answer to your initial question is no.
A case of Stage 3b prostate cancer should be almost symptom free, there may be urinary difficulties, etc, but drastic weight loss, etc sounds very unlikely.
Has you husband had an MRI, bone scan, etc?

Best wishes,

Georges

Lilabit
Posts: 5
Joined: Mar 2020

Thank you George, sorry I see now that this was the wrong place to put my husbands story and did what you suggested. Trouble is I tried to delete the page here, but could not. Is there a way I can do this?

Yes Geroge, his last MRI was in December 2019 and has had bone scan previously, plus exrays, blood tests. I drove him to many labs for testing. Thank you again.

 

L

rainlessman
Posts: 1
Joined: May 2020

I just found out i have prostate cancer, the biopsy of 12 samples revealed cancer in two samples both from the right side.  One sample with cancer was described as a "1" on a scale of 1 to 5.  The other sample with cancer was described as a "3" in 25% of the sample.  My PSA was 4.4 found during routine yearly physical.  No symptons.  I'm suppose to meet with the Urologist this week to disduss options, he is waiting on a pathology report.  I'm trying to educate myself for best discussion with him.  Question for Clevelandguy:  I interpreted you said a 3+3 meant no hurry for treatment.  And you sign off as Dave 3+4.  Can you tell me what those numbers are?  I'm wondering how urgent treatment is.  

thanks, Steve

Clevelandguy
Posts: 552
Joined: Jun 2015

Hi Rainless,

The numbers mean X(most prevelant type of cancer) + Y(the least amount of cancer type) seen in the biopsy sample.  The number 3 is the least agressive, 4 is more, 5 is worse than 4.  So. 3+3 would be the least agressive type of cancer and. 5+5 would be very agressive.

Mine was a 3+4, most of the cells were a 3(least agressive) and the minority were a 4(more agressive).  In my humble non doctor opinion any cancer should be taken seriously and not be brushed off as "don't worry about it".  But that being said a 3+3 is not as agressive as a 4+5 or a 5+5.  So take some time and study what you want to do.  Some people with a 3+3 go for years with anual or semi-anual biopsy's. An MRI should tell you where the cancer is located like close to the edge of the gland(close to escape) or deep in the middle of your Prostate(longer time to escape).  Here is a link to help you understand: https://www.prostateconditions.org/about-prostate-conditions/prostate-cancer/newly-diagnosed/gleason-score

Hope that helps.....

Dave 3+4

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