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newly diagnosed gleason 10 stage iv low psa

Henge
Posts: 1
Joined: Sep 2009

Hi

I'm 68, have been tested every year for the last 15 and have just been diagnosed, I had no symptoms and no pain. psa of 5.3. I've been told its very aggresive (gleason 10) and that it has spead to my bones and lymh nodes. They are only giving me hormone treatments, has anyone any ideas of what else I could try or any idea of what might happen to me next

lewvino's picture
lewvino
Posts: 1007
Joined: May 2009

Henge,
Sorry to hear of your diagnosis and wish you the best. There are some other men on this forum with more advanced prostate cancer that are fighting it with good results. I'm sure you will hear from them. Also you can check another site called healingwell.com which has an active forum on their with several men with more advanced states of prostate cancer.

Myself I'm 54, had Robotic surgery for Gleason 7 on Aug. 12, 2009.

Take care,
Larry

Opa N
Posts: 3
Joined: Sep 2009

Hi Henge,
Also I am sorry to learn of your advanced stage. Yours progressed very rapidly indeed. It's different for all of us.

The reading I have done suggests that exterior beam radiation therapy is beneficial for pain management. A good friend led me to a medical website, www.medscape.com that is intended for medical professionals, but anyone can register and access the site. It has lots of information about prostate cancer, including results of many clinical trials. I learned a lot about the disease that the acs site does not cover. I saw one article there about hormone therapy in persons with CAD that was of interest to me.

My situation is I'm age 67, have CAD managed with medication, with a T2b, gleason score 3+4, and had a DaVinci prostatectomy on 8/27. Pathology came back positive margins. Getting a follow up PSA test next week, and we'll see where we go from there.

I certainly wish you all the best.

Roger

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

I had a similar Gleason score and psa of 24 at age 52. I took one shot of Lupron and then 40 or so radiation treatments. Being older as you are is an advantage and if I can survive over 5 years after being told to get my things in order then your outlook should be very good. I got all the stress out of my life and that is the main reason I would give for my survival. I have refused any more treatment and my psa is now back to a rather high 30 something. It does not bother me in the least and I enjoy every day. It is all about one's attitude. The cure is within your mind.

griff 1
Posts: 114
Joined: Jun 2010

Boy i have to hand it to you man.2nd base you have a good attitude and i admire that alot. i hope you are doing good and i wish you all the best. griff

nymets1
Posts: 26
Joined: Sep 2009

Henge,

Anything can happen with PCa. However having such a low psa with advanced/aggressive disease is relatively uncommon.

With that said, hopefully the hormonal ablation will serve you well for many years. I would also recommend looking into alternative therapy. There is a ton of stuff that can help to at least potentially slow down progression of the disease, including certain diets.

JohnDa
Posts: 3
Joined: Sep 2009

Hi, I've been diagnosed with a PSA of 6.4 and a Gleason score of 6 (T1C) The title in my "subject" is a book written by Bob Marckini, a layman who had our problem. The book is fantastic . He does all the work for you. He lists almost all the various treatment options and the pro and cons of each. He has talked to 200 prostate cancer patients all over this country as well as doctors in each treatment option. To me, the bottom line is your quality of life after treatment. Many doctors are specialists in specific treatment modes and thus try to steer you in that direction. Do your due diligence and decide what's best for you. I personally am leaning towards Proton Therapy treatment. No side effects and less than 1% encounter any side effects after treatment. Only five centers in the country. Medicare and secondary insurances usually cover it. Bob goes into insurance coverage in detail in his book. HIFU (high frequency ablative) also looks like another great option but it hasn't been approved yet for use in this country. Hope I've been helpful. If you have any further questions , I'll be glad to answer with the best of my ability. John

Ralphie62
Posts: 51
Joined: Feb 2010

JohnDa....wondered if you had pursued a treatment option. We are also looking at proton or HIFU....there are HIFU trials recruiting in the US now, and we have applied, but it looks like the side effects lie in the docs hands, much as surgery....proton is harder to pull off re to treatment length and location...we are in GA, so Fla would be our choice....would love to hear from you and exchange thoughts............ralphie, and wife ps..we've read how to beat prostate cancer..it was great

Swingshiftworker
Posts: 704
Joined: Mar 2010

If you are considering Proton Beam Therapy (PBT) and/or HIFU, you should also look into CyberKnife (CK).

Reports are that HIFU works (and I considered it for myself) but HIFU is not FDA approved, so is not available in the US and it is not covered by insurance. So, you'll have to pay the $25k for it yourself. PBT is approved and covered by certain insurers but requires residence for at least 2 months (5 daily treatments for 8-9 weeks) at a PBT site. I considered PBT too but I could not get a clear predetermination on insurance coverage, did not want to pay the $35k uninsured cost out-of-pocket and did not want to have to move to SoCal (Loma Linda) for 2 months in order to receive the treatment.

IMHO, CK is currently the state-of-the-art for EARLY STAGE and low-grade prostate cancer and, if you're eligible for it, you should definitely look into it before making a final choice of treatment. CK treatment sites are also limited (as they are for PBT) but only 4-5 treatments over a week are required and CK is covered by Blue Shield, which is is my insurer.

CK is an advancement over PBT in that it substantially improves the accuracy and precision of delivery of radiation to the prostate which takes into account body/prostate movement during treatment and minimizes the potential for collateral tissue damage and dramatically reduces the potential for urinary, rectal and ED side effects. Because of the greater precision of CK, you also do not need to be fitted for a body cast that you have to lie perfectly still in and you don't have to have a balloon inserted and inflated in your rectum (to protect it) before each CK treatment, as you have to do before and during each of the 40-45 PBT treatments. The CK treatment bed and arm move in order to account for all body/prostate movements instead.

I was treated w/CK last month at UCSF and, apart from some minor urgency issues immediately following treatment, I have had no other negative side effects and Kongo (another member here, who was treated over 3 months ago) reports the same. ViperFred, who was treated over 2 years ago, also reported the same AND his PSA levels have dropped to around 0.6, which is as good as surgery without all of the side effects of surgery that are well-reported here. I received similar reports from other CK patients who received treatment at UCSF over 2 years ago.

There are other threads about CK on this forum that you can search for and you can get additional info from the Patients Forum on the CK manufacturer's site at: http://cyberknife.com/Forum.aspx?g=topics&f=2586.

Good luck in finding the treatment that works best for you!

Ladyhawk481
Posts: 1
Joined: Jun 2010

I've been looking and looking and finally found another person with a gleason 10. I hope you have found other treatments besides hormones....PLEASE contact me as soon as you can, I would like to know what your progress is so far. My finacé and I are looking for help.

Here's my story:

January 4th 2010 my fiancé, Bill turned 50, went to the ER because he was unable to urinate for hours, and came home with a Foley catheter. Used the catheter for a little over a month. His PSA was 94. February 25, the urologist did a TURP (Transurethral resection of the prostate) procedure along with a biopsy, since that was the only way of getting a sample, putting Bill under. There were issues preventing doctors from doing a biopsy a few times prior to all this of course.

March 4th, we went to the oncologist's office and he had told us that Bill had a VERY abnormal prostate, he tested positive for Stage 4 Prostate Cancer and it was a Gleason 10. He said that out of all the thousands of PCa cases he came across, Bill is the most rarest case that he had ever seen. The cancer is metastasized, but not on the bone yet. It spread onto all of his lymph nodes in his pelvic cavity. The oncologist said at this rate, there is no cure, they can't cut, operate or use typical radiation therapy since it would be useless at the moment. The only thing that's able to be done is hormone therapy and have him medically castrated by lowering his testosterone level to at least 50 or chemo.

On that same day, he had to admit himself to the hospital because his blood pressure was 80/54, he was septic, had a kidney infection from all the urine backing up and on top of that, they did an xray and found out he had a touch of pneumonia. They gave him 2 pints of blood and he spent 4 days in there.

For about 2 months, Bill had been responding well to the Hormone treatment. He was on Casodex 50mg and had a Lupron 11.5mg injection done that lasts for 3 months. The injection was done on the 15th of March. His PSA was down to .4 @ the end of April. Hormone treatment failed. His PSA started to rise in May.

On May 10th it was 2.0, May 19th it was 5.0. The doctor then said he had to do chemo and was told to stop taking Casodex. He went to his 1st chemo on May Wednesday 26th and just had another round on June 16th. Then, his Lupron shot on the following day. His PSA as of June 8th was 11. I hope you see how aggressive this thing is. We're hoping that chemo will provide some results soon. I will be asking if there is any possibility of using tomotherapy or Proton...though I heard proton works better on cancer that has NOT spread... but that's what I read and hear. Still trying to find options, I don't think this is the end. We haven't asked the "How long" question yet.

It's been a very frustrating and difficult time for us through this journey. I go online everyday spend hours just looking at resources, information on prostate cancer, posting my stories in cancer forums and I have met so many WONDERFUL people. It's nice to know that people out there, perfect strangers from all over the world, at that.

Cancer has definitely made an impact in me and Bill's life, in good ways and bad. I understand that there are cancers that cannot be completely removed, but always remember- you can choose to live with cancer or die with cancer.

Swingshiftworker
Posts: 704
Joined: Mar 2010

I only have early stage PCa and I'm no expert on advanced and late stage PCA, but if your cancer has spread to your bones and lymph notes, based on what I've read, I believe that your main remedy for that will be chemotherapy.

They are giving you hormones to reduce your testosterone levels in order to shut down your prostate and reduce the growth of the cancer. Surgery to remove the prostate (either open or robotic) is a consideration, but they probably don't want to do surgery on you because of your age. If not, EBRT could be used in addition to or instead of hormone therapy as well.

Good luck!

Trew
Posts: 892
Joined: Jan 2010

My PSA was under 10 but my gleason was a 9 with positive margins. Psa doesn't tell us much, does it.

Henge, i wish you the best. And if it were me, I think I would really get a 2nd opinion on this- contact some big cancer center. I would.

LarryB713
Posts: 1
Joined: Oct 2010

Dear Henge:

I just got a Gleason 10 yesterday afternoon. Bone and CT scans today. Then discuss treatment options. I would like us to stay in touch as our situations are similar. I am 65.

PA_grandma
Posts: 48
Joined: Oct 2010

Henge's message was posted in 2009. Wish he would/could reply to you, Larry!

I'm the caregiver for my 79 year old husband. Gleason 9, Bone scan (good result) two days ago... Lymph node biopsy next Monday (expecting a bad result). He had his first two injections of Firmagon hormone yesterday.

Hope your scans go well. This is tough going.
Joyce

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