Recently diagnosed

Kongo said:

Go to Georgetown

It seems like you are in the DC area.  I suggest that you investigate CK at Georgetown Medical Center that has an advanced CyberKnife center.

In my own case, I've posted frequently about my experiences with Cyberknife and I would urge you to check them out on this forum.  I have had no issues at all with Cyberknife.  Easy procedure.  No ill effects afterward but I would encourage you to visit a CyberKnife doctor directly and not take advice from strangers on the internet.

Good luck to you.

 

K

If you are in the DC area you might consider robotic treatment at the washington hospital center (whc). I've heard good things about the robotic surgeon there. personally, I wouldn't go with a surgeon who has only done 80 prostatectomies, robotic or other wise. I believe the robotic surgeon at whc is Johnathan Wong. You should also consider going to Johns Hopkins in Baltimore...which is where I chose to have my surgery just last month. They have surgeons who can do either approach...robotic or open and who have done hundreds/thousands of them. The key factor in how well you do with prostate surgery is the skill of the surgeon. If you go to Hopkins suggest you talk to either Bal Carter or Alan Partin. Both of them are experts and have done many many of these operations. If you have an enlarged prostate chances are you suffer from urinary issues just associated with that.....you may actually see improvement, I have, in urinary functioning once that large prostate is removed. best of luck...

Jacquet said:

I have an MRI with high power magnent (i think that's right) on the 23. My doctor says taht this will show if there are any tumors too small to see with a regular MRI. All my other test have come back good (bone and regular MRI). If this MRI comes back clean I think I'll go ahead with the surgery and be done with it. If I was older I would use active survellance but since I'm 59 not 79 I need to take action.

 

My doctor, while recommending robotic surgery, also said to check into cyber knife. The military hopsital at Ft. Belvior does not do this proedure, so I'm checking around. Thanks for the good tips on JH. My wife gets regular treatment there for her eye lids and they are a great hospital. If it works out  have no problem driving 1 hour to get there.

 

 

If you plan to go for Johns Hopkins for treatment, I suggest that you get the MRI with a high power magnet at that facility. Many facilities like to do their own diagnostic testing, and do not trust tests from other facilities.

Also if you go to JH I would discuss treatment options to include Active Surveillance...they are the experts...

Jacquet said:

Ok, so I went to Walter Reed and had the 3 Tesla, chlorine MRI, which found the cancer to be contained in the capsule of the prostrate, nothing outside. What they also determined was that the tumor is close to the urinary tract and to do any surgery would almost certainly result in loss of control, meaning I would have to wear pads/or use a bag, and I would definately loose any of the sexual function I still have. Not much but it still functions.

 

So the doctor recommended that I get beam radiation. Bieng that surgery is too risky, the beam can dover the whole tumor without sugical damage to the urinary tract and might even improve my functions. The big draw back with beam radiation is that it's 8 weeks of daily doses, but then again that's a small price to pay. The doctor also said that the beam radiation would give me at least a 90+% sucess rate and that I would likely expire from heart issues or some other malady. If the cancer did come back it could be long term management. By that time I'll be 70+

So my choices are the 8 week radiation or possibly cyber knife. I'll be able to make a better informed decision after I talk to my radiologist.

Jacquet

You are doing it right. Get informed and consult several specialists before committing. Remember that outcomes are better if the team diagnosing and treating you are high qualified physicians in PCa

Prepare your own list of question and do not care if they seam odd to you.

Here are some ideas to your list;

http://www.cancer.net/patient/All+About+Cancer/Newly+Diagnosed/Questions+to+Ask+the+Doctor

Best wishes.

VG

Kay23 said:

Daddy just diagnosed

Hi everyone, 

Never thought I would be saying this but sadly my daddy has been Dx with APC (advanced prostate cancer)  We have only just found out and one can imagine,  we are all sscrambling for information and hope that we are approaching this the right way - if there is a right way   We are absolutely besides ourselves.  I myself have only just had the courage to read all about my daddy's cndition so at present have little information.  What I do know is that my daddy's Gleason count was 8,2 in Feb,  it is now down to 0.04  he is currently on HT treatment - sadly the monster has travelled to his bones.  I am really not very familiar with all the terms and am taking it upon myself to find as much info as I can and I am looking for hope.

I live in Europe my daddy in Africa - so its really really hard on us all.

My daddy is 73years old,  usually very fit and healthy

Gleason count was 8,2 down to 0.04 30 May 2013

Bone scan Monday

 

So we can best help you and continue the thread for Jaquet, please repost your post , starting a new thread. The way to  this is to click, Prostate Cancer on the top of this page, then click , start a new topic under prostate cancer on the upper left side of the next page. .....Thanks

VascodaGama said:

CK or IMRT are at the same level in low risk cases

Jacquet

I am glad to read about your detailed explanation regarding the steps you are taking to diagnose your status. Your action will lead you to a better decision on a treatment, in case it would be required.
The MRI findings confirm the previously found positive DRE. I am curious to know if the biopsy did include one core aiming to the bump area. Can you describe here the contents of the pathologist report, which areas and lobes were sampled?

As you comment, a biopsy covers only a fraction of the prostate so that the procedure is not complete to analyse and attribute a proper clinical stage of a patient but it is the only way (at the present) to diagnose cancer. It could also “catch” a breaking spot in the outer shell of the prostate indicating extra capsular extensions.
This is what your doctor is commenting and by her experience she is declaring you as a T3a patient. The Gleason score, though, has not increased from 6 to 8. Such could be only declared by a pathologist if an addition core is taken and confirmed. Probably she meant that you are at higher risk for metastases similarly to a higher Gleason score patient. The high PSA may also be due to a voluminous tumour from a lone colony or from micro many colonies.
Again, the biopsy did not confirm that (only one core positive) and so one should guess and base his reasoning on past experiences.

NCCN Guidelines is exactly based on successes and gives preferences to the high rates. It takes into account the age and health condition of the patient, but it does not cover conditions regarding the side effects or quality of life.

The treatment proposed by your doctor refers to the combi HT+RT which were found to have higher successful rates in long periods of biochemical free (such include cases of cure).
The procedure is recommended to cases of extra capsular extension requiring a wider field of radiation (localized lymph nodes, iliac and bladder neck) done in several fractions (typical IMRT). The neoadjuvant hormonal portion will sensitise the androgen receptors of the cancerous cells so that the latter radiation action will “work” better. The period of the adjuvant HT portion in the treatment is controversial. Many doctors have found no benefit in longer periods of hormonal administration. I myself are biased and would not follow a long period of adjuvant HT. The fact is that the radiation is the “portion” that can cure and that would be only ascertained at a “hormonal free environment”. Moreover, hypogonadism is not a “healthy” status. Our body systems need testosterone for proper function.

However, in localized contained cases the radiation field is limited to the prostate gland and the same NCCN Guidelines “offer” other ways of radiation treatment. CyberKnife is a procedure to deliver hyperfractionate radiation which has proved to be more successful when comparing to lower fractionated doses. The treatment is “short” in the number of fraction and in the total Grays administered. IMRT may also deliver higher doses of Grays but the CK system is set (not a novelty) and known to work well for its purposes. Why change it?

Spot radiation can be done by almost all machines and methods. This is not important to treat your case. You need to think about the side effects and risks each treatment entails. HT leads to its own symptoms and RT is dependent on the accuracy of the delivery. The hypogonadism status returns to normalcy once one gives up with the drugs.

Regarding the statistics, both types of radiation present similar rates of success in low to intermediate risk cases. IMRT is preferred for wider field of radiation that requires lower doses of Grays per section. This is usually recommended to high risk advanced patients.

You have been diagnosed by your doctor as intermediate to high risk case. This is a sole opinion and I think it right that you get consultation with other specialists before committing. You would not lose anything if the hormonal treatment starts now and decides on the RT after or even if you start the hormonal later after second opinions and feeling more confident in your judgement.

Do not let the “army financial problem” take the “primer seat” if you can afford it. There are other CK survivors in this forum that have gotten CK under military auspices. Surely there are thousands of patients that did IMRT with success. The team and facilities in charge of the isodose planning and administration makes a big difference in the outcome. I would include your famility in the final decision.

Please note that I am not a doctor. 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 since 2000 when I become a survivor and continuing patient.

Wishing you the best.

VGama 

Cyberknife has a patient forum on their website that provides a wealth of info from current patients and comments from several MD prroviders of CK therapy. In addition to biochemical success, it is extremely important to compare various therapies rates of side effect: ED, Urinary, Rectal.....but also look for late onset problems in the same areas caused by different forms of radiation therapy. 

Best of luck,

Bill

J

I am very pleased to know that you are doing well and managing the situation. Soft stools are common in RT PCa treatments. You may change diets during this period so that you can control better the condition. Just inquire with your doctor about what to eat and search the net. Here is a link;
http://www.cancer.gov/cancertopics/coping/radiation-therapy-and-you/page8

HT typically causes fatigue and a change in mood and that may reflect behaviours less pleasant when among people. You just have to think that those are temporary and accept some changes in your daily life style at home and at work.  

When in consultation with your radiologist, explain in detail all the effects you are experiencing. I had weekly meetings with the physicians and felt a great relieve in knowing about what they have already accomplished and about the scheduled next fields of radiation and their purposes. It is good to have the feeling that we make "part of the team" doing the treatment. It gave me the confidence and trust one need when treating cancer.

Best wishes for a successful outcome.

VG 

Jacquet said:

VG,

 

Just as you said, I'm experiencing some of the symptoms of the radiation. My doctor gave me some imodium to help control the bowel movements and I'm actually doing OK. A little discomfort from gas once in a while, and a littl bit of like a sunburn in the nether regions, but all in al doing OK. I'm ow half way through the 8 weeks and think I'll mkae it. My Dr says I am doing great, everything is going as planned, and that after the treatment is dons it may take a few weeks to get back to almost normal.

 

Jacquet

Congratulations Jacquet.

I hope that those symptoms disappear and that all goes through smoothly. I used a sort of cream to protect the skin where rays enter. I also felt some irritation when peeing. Medications did the job. Tell everything to the radiologist or the nurse. Do not forget in drinking a lot of water one hour before each section.

Best wishes for continuing success.

VG