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Very high PSA 1440, Prostate cancer spread to bones confirmed - Now What?

Raddad
Posts: 11
Joined: Jul 2011

Just joined this forum today - definitly looks like a great place for information. I do want to thank everyone who has shared thier experiences.

Has been a very tramatic 12 days for me. Within these last days I had a blood test and the PSA showed abnormal high - as a level of 1440. Since than I have had a bone density scan which showed the prostrate cancer has spread - wide spread - through my bones. I have no pain at all - but I did in Feb fall of a step ladder and for about a month after that my tailbone hurt a lot than the pain gradually went away. Within the last 2 months or so no major discomfort at all.
Thursday I saw the Urologist who did a DRE he said he could feel the cancer but he could get his finger around the prostrate. When the Urologist asked how I was - I told him physically am fine, but mentally - scared . The Urologist Doctor bolstered by confidence by saying "This is treatable and survivable".

He also said I need to be careful as the prostrate cancer in the bone does show I am at risk of fracture - He recommended no jumping / running - but to do some walking and not become a couch potato.

He prescribed BICALUTAMIDE, 2 tablets (50 mg each)to be taken once a day at the same time of day. I started taking that on Thursday 21 July. I am also taking 500 Mg of Calcium with 400 IU Vitamin D twice a day - making sure I am not taking the calcium within 3 hours of the Bicalutamide. (the calcium/Vitamin D being suggested by my son-in-law who is a doctor).

Next week I get a CAT scan and than on 4 Aug see the Oncologist (for the first time).

Any words of advice will be greatly appreciated!

What can I expect here?

lewvino's picture
lewvino
Posts: 1004
Joined: May 2009

Welcome to our forum and sorry to read about your advanced case of prostate cancer. I'm curious as to what your age is if you don't mind sharing.

I am not a Doctor or in the medical field just another man that has been treated for prostate cancer. I assume you still have your prostate from the comment that the doctor could get his finger around the prostate. I assume that you will be having surgery to remove the prostate and the cancer in it. That should help some with your PSA but as you know with it spread to the bones is another round of treatments.

Have they performed a biopsy yet? I would assume your Gleason score will come back as 9 or 10.

This is a great forum and lots of support can be found. I would recommend you purchase the book by Dr. Patrick Walsh "Guide to surviving Prostate Cancer". Learn as much as you can. Also another excellent forum for support is healingwell.com (prostate cancer section) Between this forum and that one you will get quick answers to your questions that you will be faced with as you start this journey.

Do keep us updated

Larry age 56 (gleason 7)

Davinci Robot for treatment

Raddad
Posts: 11
Joined: Jul 2011

lewvino

Have not had a biopsy yet, the Oncologist - actually as I understand the Head of the Department has agreed to see me on 4 August as it is very apparent with the bone scans and PSA levels and DRE that this is prostrate cancer and prostrate cancer in the bone.

I turned 63 in April this year. I am being treated at the Veterans Health Center in Washington DC and so far have been very impressed with the people and facility.

lewvino - did you face prostrate cancer in the bone?

Thanks for the information on the other forum - I will be sure to check there also.

My New Motto - LIVE LONG AND PROSPER!

I AM going to beat this thing!

lewvino's picture
lewvino
Posts: 1004
Joined: May 2009

No, Mine was confined to the prostate with a 'positive margin' noted post surgery. Which means the cancer was found at the very edge of the surgical speciman. My surgery was in Aug 2009.

If you served at all in Vietnam you can get an extra bonus monetary disability amount. Make sure and check into that also. The war was winding down when I became of age.

Lewvino.

VascodaGama's picture
VascodaGama
Posts: 1530
Joined: Nov 2010

Raddad

In prostate cancer several pieces of information are required to have a complete diagnosis of our status. PSA and a “bone density scan” are not enough. (I think you meant Bone Scintigraphy scan)
Cat scan will give you an idea of what the doctor felt in the DRE. However, if cancer is in the bones a treatment like surgery is not recommended because it would not have any effect on the spread. You will require an aggressive hormonal treatment (HT) or chemo therapy to get some control on the metastases. Depending on the spread of the cancer, some doctors recommend a combination of HT with radiation therapy (RT), but radiation to the bone may be required latter to control pain, etc.

Usually HT protocol includes a LHRH agonist shot (such as Lupron or Eligard or Firmagon, etc.) with an antiagonist (such as Casodex or Cyproterone, etc.). The aim is to stop the feeding of testosterone (T) to the cancerous cells (these survive on T), by lowering the level of T in our body.

Bone loss is common due to the metastases and this tends to be more aggravated due to the treatment. Zometa (a bisphosphonate) is normally recommended for this class of patients to help in the fight of the cancer and at the same time to help with bone loss.
You should inquire with your oncologist in your next visit about this protocol, the medications and the side effects (some are nasty and I recommend you to search details in the net). You could also inquire about newer drugs and trials for cases similar to yours, to have an idea of newer developments in the treatment of metastases.

Two good books I recommend you to read are;
“Beating Prostate Cancer: Hormonal Therapy & Diet” by Dr. Charles “Snuffy” Myers; which informs on diagnosis and treatments for systemic cases and their lifestyle tactics including nutrition.
“A Primer on Prostate Cancer, The Empowered Patient’s Guide” by Dr. Stephen Strum and Donna Pogliano; which explains well the whole process of diagnosis and results.

Welcome to the board.
Hope you get control on your case.

VGama

Raddad
Posts: 11
Joined: Jul 2011

VGama

Thank you for your excellent response!

I may have used the wrong terminology when I said a bone density scan. It was called a PET and was accomplished at the nuclear medicine area of the facility. This is where they inject you with a radioactive material, wait a hour than put you through a big tube like device. Grins - how is that for a technical definition?

I also posted this same topic on healing well and have received a great deal of information. Much the same as what you provided in your post. If you are interested - http://www.healingwell.com/community/default.aspx?f=35&p=1&m=2169075#m2169775

I've grasped, or at least now have a better idea that I will require a number of different medical treatments dependent on what is found.
I do have somewhat of a advantage over most folks in that I have a Doctor as a son-in-law who is a great help in providing guidance and translation on what the medical community is telling me.

I have also 'adopted' a new motto - "Live Longer and Prosper!"

Thank You!

lewvino's picture
lewvino
Posts: 1004
Joined: May 2009

VascodaGama - I'm curious on your above statement that "if cancer is in the bones a treatment like surgery is not recommended because it would not have any effect on the spread"

As we are all learning on our prostate cancer journeys, I understand that it would not help on the spread since it is allready outside of the prostate into the bone. However would they not want to remove to at least have an immediate lowering of the PSA from its root source? Just curious.

Larry (lewvino)

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

Rad,
My psa is much higher, with bone tumors, and yes there is treatment, but there is no cure. If your bones are involved you will be wanting to get a plan. You are very lucky to have no pain, highly abnormal.
The oncologist will give you the option of treatment, which may give you an extra couiple months or it may take your life much quicker. I chose hospice care and am still able to work, garden, golf. It is very difficult but you can not give up. Keep things as normal as possible and try not to stress, though that will be hard. Cat scan should show tumors. I had some pallitive radiation for pain about two months ago, which helped with the pain. I wish you all the best.

Raddad
Posts: 11
Joined: Jul 2011

2ndBase

Much higher? Can you share what that number is?

Mine is 1447 and luckly I have no pain - well other than the normal aches and pains one accumulates over 63 years of life.

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

When in hospice care no curative treatment is allowed only pallitive. My last psa before hospice was 3212 and would be many times higher now. The number is totally meaningless at this point to me.
My pain level has been very high for many years and between the drugs and steriods I have a great deal of weakness in my legs and walking is difficult. I did take 10 more radiation treatments on a large spine tumor which took away a lot of pain. The steriods are catabolic and have the effect of tearing down muscle while working with the drugs to fight pain.
Since you have little pain you will want to be careful that you do not make a better situation worse. I am now 60 years old..

Swingshiftworker
Posts: 626
Joined: Mar 2010

FWIW, high calcium levels have been associated w/increased prostate cancer risk. So, I'm not sure it's advisable to take the calcium supplements that your son-in-law recommends.

I was taking 1gm of calcium twice daily before my dietician (who specializes in oncology) recommended that I stop taking them for this reason. Some also suggest stopping the ingestion of ALL dairy products for similar reasons. You should be able to get sufficient calcium intake from a normal diet w/o supplements. Here's a link and quote from the NIH FAQ sheet on calcium: http://ods.od.nih.gov/factsheets/calcium/

"Cancer of the prostate

Several epidemiological studies have found an association between high intakes of calcium, dairy foods or both and an increased risk of developing prostate cancer [86-92]. However, others have found only a weak relationship, no relationship, or a negative association between calcium intake and prostate cancer risk [93-96]. The authors of a meta-analysis of prospective studies concluded that high intakes of dairy products and calcium might slightly increase prostate cancer risk [97].

Interpretation of the available evidence is complicated by the difficulty in separating the effects of dairy products from that of calcium. But overall, results from observational studies suggest that total calcium intakes >1,500 mg/day or >2,000 mg/day may be associated with increased prostate cancer risk (particularly advanced and metastatic cancer) compared with lower amounts of calcium (500–1,000 mg/day [1,56]. Additional research is needed to clarify the effects of calcium and/or dairy products on prostate cancer risk and elucidate potential biological mechanisms."

I suggest you talk w/your oncologist about taking calcium in general and in conjunction w/bicalutamide in particular.

Good luck!

Raddad
Posts: 11
Joined: Jul 2011

Swingshiftworker

Good points, but if you already have prostate cancer in the bone you need to streghten the bone.
I did talk with my oncology person today and told her I was taking Bicalutaimide and also twice a day 500 mg of Calcium. Now I've not yet actually seen the oncology department, only the Urology department - hence my treatment is just starting - as the 4th day. She said that is fine than went on to explain part of my treatment will be bisphosphonate for the bones.

Pay attention to your medical people:) They are the ones who know what is right for you

Bud

VascodaGama's picture
VascodaGama
Posts: 1530
Joined: Nov 2010

Larry

We survivors are curious of our own disease. Why should it be there and why me.
There is no proper answer and many of the comments we gather from health care practitioners and patients are pure and simply based on past experiences and logic.
Science on PCa and its treatment, as we know it, are short for a decisive standard to follow in the procurement for “Cure”, but we know that those findings from research and statistics are at least good “weapons” in the fight against cancer, till the discovery of the eureka “silver bullet”. Nevertheless one should pursue cure.

In my opinion the best confrontation to cancer is to know how to manage it. I highly emphasise the Quality of Life and my comments are based on a balanced approach.

To answer your question, even if we consider surgery and radiation as the only practical ways for reaching the prime goal of cure, in prostate cancer, we know that such can be achieved only if the whole cancerous cells are dissected or killed (burned). Otherwise, any intervention with these radical approaches would just treat the “wound” not cure it.

In one study at Mayo Clinic, it was found that surgery for cases classified as cT3 (cases with localized metastases from extra capsular extension) indicated improved survival rates (http://advancedprostatecancer.net/?p=2592) than without it. However, in T4 cases (distant metastases) nomograms give a different picture.

Surgery of prostate cancer, in my opinion, is not a good candidate for a palliative type of treatment. The risks from a complicated operation and the assured added side effects are just not worth what one gets by “Debulking”.
Nowadays there are other means for reaching to similar accomplishment with radiation modalities, lesser invasive and covering other areas not reached by surgery. Surely we would see surgery as the palliative treatment in cases where other complications exist (such as rectum ulcerative colitis) prohibiting others applications.

PSA is the marker to certify accomplishment. Low means “good” for all of us but the success of its meaning can be for the “eradicated cancer” cases as well for the “continuous management” cases (advanced status).
In this site you have a team of famous oncologists in the treatment of prostate cancer (http://compassionateoncology.org/publications.html) that have established protocols based on high levels of PSA. They actually try to avoid total cancer inactivity, which seems to promote longer extension of life in advanced risk patients.

When from RELIABLE DIAGNOSIS one knows that PCa is over the reach from a surgeon’s hands (distant metastasis) then other choices should be investigated in the management of the cancer. Either one pursues cure or control or still does nothing, as our admirable friend 2ndBase.

Researchers have found that radiotherapy is the only possible way for cure in the presence of metastases, but that is valid on a “guessing” approach and one cannot avoid the complications and side effects that will be there too.
Again, we find ourselves confronting the dilemma if in fact “cure” is worth in comparison with Quality of Live. How much one is prepared to give in will be the best to solve the situation.

Wishing you the best.

Sincerely
VGama

jogger
Posts: 47
Joined: Nov 2009

Hello Raddad,

In your first letter you mentioned taking 400 units of vitamin D, as recommended, I believe, by your son-in-law, who is a doctor. He is apparently a conventional doctor, because an alternative doctor or a naturopath would likely recommend 4000 or 5000 units orally each day,or even, in your case, a weekly injection of 50,000 units of Vitamin D3. At least you should have your vitamin D3 levels checked. About 6 months ago my level was 30, which is not good enough considering I'm dealing with prostate cancer (which has not spread beyond the capsule). After taking 4000 units a day my level went up to 70, which is a good level. I started out with a PSA of 800 and, thankfully, after 16 once-a-month injections of Degarelix, my number is now .5. My side effect include full body aching for one day after the injection, a rock-hard inflammation at the injection site which is not so bothersome after a week, hot flashes 3 or 4 times every
day and enlarged breasts. I hope that I have helped, rather than confused, you.

Gianni

Raddad
Posts: 11
Joined: Jul 2011

jogger

I had a brief conversation with my oncologist, in advance of my 4 Aug meeting - which will actually be my first with the oncology team. I mentioned I was taking the Calcium with Vitamin D supplement and she did not object at all. But as I said that was a very brief conversation.
I have seen all sorts of levels one should have of Vitamin D3 - never the 50,000 you mentioned!
I'm just starting on my journey with this and fully expect this thursday will be where I fully learn what my treatments will be.
I have a list of questions already put together and will add the Vitamin D3 to that.

I'm also going to ask about diet, I have seen Vegan recommended, a I quess modified Vegan with some fish and chicken and also a Mediterranean, heart heathy (Dr. Myers)

800 to 0..5 - Wonderful! Good for you!

Bud

jogger
Posts: 47
Joined: Nov 2009

It's been three months since my last shot and we're still at .5 and my doctor wants to see me in two months. The 50,000 units of D is an initial dose, followed by a maintenance dose, which I don't remember but probably at least 5,000 daily. How has your treatment progressed?

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