Paralyzed with fear - gleason score 9 (very worried wife)

Kongo said:

Please get second opinions
DJS,
I am so sorry that you and your husband find yourself dealing with this diagnosis but you have come to a good place to gather information from others who have travelled this path before you. I hope you also encourage your husband to join the website as well as I think he will benefit from being able to interact directly with other men suffering from this disease.

I assume that the “DO” doctor you are referring to is a doctor of osteopathic medicine. While he may seem very knowledgeable and thorough, I believe that with the serious diagnosis you have that you should consider immediately seeking second opinions from specialists in advanced prostate cancer. When I was diagnosed with “low risk” prostate cancer in 2010 I ended up seeing six specialists before deciding on a treatment.

As you are beginning to understand, a Gleason 9 diagnosis is very serious indeed but it is certainly not the end of the world and there are many treatment options that can slow the progression of this disease and provide your husband a high quality of life and the both of you many, many more years together.

Prostate cancer, like breast, ovarian, colon, and other cancers tends to metastasize. This is why your doctors ordered bone scans and the MRI. They are looking to see if there are any distant tumors that can be detected. Even if these scans come back “negative” it doesn’t mean that the cancer hasn’t spread, it just means that they can’t see it yet. That’s a good thing. If they can see distant mets they can decide how to treat them and that’s another good thing.

Surgery to remove the prostate is typically not done for men over 70 or for men with heart conditions. Also, with a Gleason 9 the likelihood that the cancer has already spread is almost a certainty and removing the prostate won’t stop the progression of cancer elsewhere in the body. It will only add additional side effects involving urinary continence and sexual function on top of any symptoms the cancer brings. Keep in mind that cancer in the prostate is not what kills men, it’s the prostate cancer that spreads to other organs or the bone that eventually kills men although it should be kept in mind that only about 1 in every 35 men with prostate cancer actually die from it.

Prostate cancer needs testosterone to grow and multiply. Hormone therapy drugs block testosterone from the cancer cells and in the absence of testosterone most (but not all) of the cancer cells will eventually die if the therapy is administered properly and for the right amount of time. There are side effects to hormone therapy that can involve hot flashes, loss of libido, mood changes, weight gain, breast enlargement, and so forth but there is considerable variation in how different men are affected. As prostate cancer progresses (as in the case of the higher Gleason scores) the cells become more primitive and can continue to grow even in the absence of testosterone or they will make their own testosterone. Other drugs are available to treat cancer cells that become resistant to conventional hormone therapy.

Various forms of radiation are also used to treat advanced prostate cancer and to the mets in distant locations. Your doctors (and the second opinion doctors I hope you visit) can describe the pros and cons of this treatment. Typically radiation has very little side effects and is very effective in treating mets in the bones (prostate cancer really likes bone marrow).

I fully understand your emotional condition at this point but there have been many advances in the treatment of this cancer in recent years and even advanced cancer such as your husband’s is no longer an automatic death sentence. At this point we need to rationally and pragmatically look at the options and the pros and cons of potential treatment opportunities. Every treatment has some sort of downside, and some can be quite severe. While none of us expect to live forever, in my opinion at least, those days that we do have left should be the highest quality possible. As you and your husband understand more about this disease you will be able to assess your individual quality of life priorities and balance those against the treatment options. In my opinion, only an educated and assertive patient with the support of his family can adequately meet this challenge.

While I strongly suggest that you seek out second opinions from doctors who specialize in the treatment of prostate cancer, I would certainly talk to your DO about dietary changes that might help curb the progression of this cancer, particularly with the intake of red meat, dairy products, and processed foods.

Best of luck to you both.

K

tarhoosier said:

Fear? Fear!
Mrs S:
Fear is the natural reaction. I recall it well. I lost 15-20 pounds after diagnosis and needed medication for sleep. I have moved on. I recall the shock and depression as clearly as possible after six years have passed.
Your husband needs the BEST medical advice possible. A second opinion on the G score is proper and necessary as Vasco says. Another opinion on the treatment is possible as well. Radiation with hormone is a likely (certain?) recommendation.
The good news? Your husband is not likely to die of this disease.

I do not fully understand the biopsy information, but that is not really important. If the second opinion on the samples confirms anything over a G7 then treatment is likely to begin promptly. Mr. S has a very long time to go.

Kongo said:

PSA
djs,

In advanced prostate cancer typical with a Gleason 9 it is not uncommon to have low PSA scores. This is because as the cancer cells become more and more advanced (they actually become more primitive cells and are less and less like normal prostate cells) they tend to produce less PSA.

Your doctor was right about the PSA level being a poor predictor of cancer. It only has about a 50% accuracy rate when used as a stand alone tool which means you can do just as well predicting cancer by flipping a coin. PSA density, PSA doubling times, and PSA velocity calculations give more insight into what might be going on but those are really only valid for cancers that are not as advanced as a Gleason 9.

The only sure way to diagnose prostate cancer is through a positive biopsy and you certainly have that in spades.

Given the high number of retirees in Florida I am sure you will have little problem in finding a top rate prostate cancer specialist.

K

tarhoosier said:

Second opinion
Just to be sure there is understanding, the second opinion I believe you are referring to is a second opinion ON THE BIOPSY SAMPLES. There may be no need for a second opinion on the treatment modality, though you may seek one. JHU can determine with near certainty the Gleason score of his samples. This is done by a doctor sending the samples to JHU and receiving the results in a reasonable time, usually 2-3 weeks, maybe less. This is to be certain the original pathology opinion was sufficient to require treatment. I think it is likely that the JHU opinion (or whoever is doing it) will still require hormone/radiation for Mr. S. There is some issue of starting promptly, particularly with G9. Hormone can start one place with radiation happening someplace else a biit later.
At that point is is important to find the best and most experienced doctor for the radiation. Do not be intimidated by technology, unsupported claims, promises, jargon.

rch said:

Second opinion from JHU
DJS
Sorry to hear about your husband's CaP. If you are interested in a second opinion from Johns Hopkins , please visit the website below. It gives all the costs, terms and conditions and FAQs about the second opinion. Thanks
http://www.hopkinsmedicine.org/second_opinion/urology/

VascodaGama said:

Be Positive, Your Husband will do well
DJS

I am glad to read about the negative bone scan. This may indicate that your husband status is Localized and it could well be contained. The CT scan will take a picture at the pelvic area and may provide move evidence/info on the localized spread of the cancer. However, it is common to get negative image studies when patients have low PSA levels, because the tumour is too small for the equipment’s image capabilities.
In fact, NCCN recommend these tests to cases with PSAs over 10, but CT data will serve as an important basic “tool” for future references and will provide a much needed peace of mind.

In your first post you say that “...the doctor said, things didn't feel right up there and were bumpy...”, this piece of information is related to a positive DRE. The “bumpiness” is from nodes in the prostate shell felt by the doctor when touching the gland. The worse is that these nodes could be indicative of extra capsular extensions and, therefore it could indicate some possible localized spread of micrometastases.
Is there any comment on ExCE by the doctor or the pathologist?

If these micro colonies of cancer are big enough they may be caught by the scan.
If the CT is negative one would think of your husband’s case as contained. In any case, surgery is not recommended on two points; The age of your husband and The positive DRE.
Your husband has the word for the final decision. My opinion as a layman (no medical enrolment) is that he should follow a palliative protocol with androgen deprivation (hormonal). I read posts of guys at the age of your husband that have chosen surgery as their prime treatment. (????)

The “numbers” you indicated from the pathologist report below, are probably from four cores found with cancer within the 12 samples taken. The percentage is also in the report and that would indicate the volume of the cancer.
Gleason grades of 4 and 5 (the highest) are present in the Left Lobe. And Gleason grade of 4 are in the Right Lobe. Both medial base and apex are affected (MB and MA). The bumpiness may be at the lateral mid base (LB).

“ Prostatic Adenocarcinoma, Gleason 5+4=9/1- LMB,LMA
Gleason 4+5 - 9/10 LLB, LLM,LMM
Gleason 4+4 = 8/10 RMA
Gleason 3+ 3 = 6/10...”

The above classifies your husband on the clinical stage T2c. With a positive CT scan he would become a T3a. If DRE have been negative then it would be T1c (contained).
The PSA at 1.46 (ng/ml) is considered low. In the presence of a positive DRE and Gs 9 the diagnosis is for an aggressive form of cancer which requires control before it becomes systemic. After treatment (any form), the continuous evaluation of your husbands’ case will always use the PSA as a marker of success, even with G-grades of 4 and 5, because the cancer found is Adenocarcinoma. Kongo’s opinion on PSA is partially correct.

In regards to second opinions, you can have both; Recheck the data obtained in other sources (biopsy, scans, etc.), and Opinions on treatments (RP, RT, HT, etc.).
In both cases the whole data gathered by your doctor should be sent for the second opinion with a referral indicating the suggested therapy. Other information related to other health problems and medications taken should also be attached, so that you would get the best reply.

Johns Hopkins and Dana-Farber are centres of excellence for prostate cancer. You could expect a trustful reliable opinion from their specialists. In Florida you have another institution of excellence the Mayo Clinic (http://www.mayoclinic.org/jacksonville/). You can inquire about their local services on PCa. To find an outstanding oncologist you can research at the pubmed site (http://www.ncbi.nlm.nih.gov/pmc/) typing his name as a researcher. The “good ones” got many published articles on studies involving diagnostics and treatments for prostate cancer.
Others are also good but tend to follow guide lines from their “sector” of trade (speciality). Surgeons will follow AUS and radiologists will follow ASTRO and oncologists ASCO. It all depends in finding one that your husband likes and feels comfort in.
The South Florida Radiation Oncology has a department for prostate cancer where you may get a second opinion on radiation oncology.

Wishing you the best in your continuing researches.


VGama

VascodaGama said:

A bump in your Journey
DJS

I hope you get a response on Dr. Nicholas Iannotti. I couldn’t get any information on him even at Pubmed. However, I believe that your GP has no “interests” in your case so that he may have chosen Dr. Iannotti from past relations or just by chance. Florida is very wide and you can find many medical centres caring for prostate cancer. A famous researcher medical oncologist specialist in prostate cancer is Dr. Richard Sorace working with the famous radiologist Dr. Michael J. Dattoli at the Dattoli Cancer Center, Sarasota, FL.
(http://www.dattoli.com/)

This centre is well known by the PCa community for radiation therapy in particular the Brackytherapy. Dr. Sorace may be biased in his recommendations but he is very good and I would recommend him in case your husband decides to get a "look" on RT possibilities.

You do not have to type-up here the other details of the biopsy. I hope your doctor is an expert on the matter and that he has requested/done the biopsy with references to the “bumpiness” (nodes) he felt on touch. Usually the needles are directed to standardized locations (for the 12 cores) but some may be directed to suspicious areas for checking on extra capsular extensions. The TRUS biopsy allows a view of the prostate live and can guide where to “drill”.

For your reference, the clinical stages go from T1 to T4 as in many other cancers. You can read details here;
http://www.psa-rising.com/prostatecancer/staging.htm

Please note that I have no medical enrolment. I have a keen interest and enthusiasm in anything related to prostate cancer, which took me into researching and studying the matter along the eleven years as a survivor and continuing patient. I have participated in several prostate cancer conferences and symposiums as a patient, and have been one of the panellists in cancer supporting gatherings.

I like to see you so involved in your husband’s care. My wife was also the one that gave me the comfort I needed at my timing.
Hopefully this is just another bump on your husband’s journey.

VGama