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Prostate Cancer: The waiting to get going on treatment is killing me
I just received the diagnosis of prostate cancer from my urologist on March 25. PSA 4 months ago was 5 and gland felt normal. Then a month ago PSA jumped to 14 and they found a bump during the DRE. Then the biopsy. High Gleason score of 10 indicating aggressive at that spot. I have been checked yearly and at 6 month intervals for 7 years. I sit here 14 days later and still have not had a face to face with the Dr. He is on vacation. I am thinking of just heading to Mayo and get this process rolling. Shouldn't I have had more concern here from my docs to get moving? Or am I impatient? I feel the waiting is killing me and my family. The bone scan is done as well as the CT scan. Bone scan is good, CT shows slightly enlarged lymph nodes in the pelvic area. Could be just swollen. Insurance company denied a further PET scan and now I am waiting again. What an ordeal to deal with and no one seems to be as concerned as me. Any thoughts.
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jt3451: your right. It is scary so take one day at a time. I had 3+4 and isolated in the prostate with a psa of 10.2. I had multiple opinions from radiation oncologists from different centers of excellence. Did not feel the 20-30% risk of biological reoccurrence with prostate removal was worth it and the potential for side effects and quality of life, did not work for me. Many on this web site have had success with it.
Narrowed my decision down to the mridian Linac radiation machine or proton therapy. Chose the mridian machime with 5 treatments because the healthy tissue that was exposed outside the prostate was 2 mm vs 3-5 mm with proton and other radiation treatments. The mridian also automatically shut off if the machine detected the radiation was about to go out of the mapped area. It is also the only machine that has a built in MRI so real time dynamic planning and adjustment in response to internal and external body movement was important to me. Dr Himanshu Nager from Weill Cornell/NY Presbyterian in New York city has lots of prostate experience with the machine.
Use your biopsy material, which is good for about a year, to get a decipher test to test the aggressiveness.
Many people chose proton therapy and are happy with their choice as well because of its narrow beam and the radiation exit was limited.
Ask about spaceoar insertion which separates the bladder from the rectum and helps minimize health tissue exposure from radiation.
The more healthy tissue that is exposed the more potential side effects and quality of life issues.
Good luck and keep asking questions.
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2 ReactionsBased on my experience with Mayo Jax and my RLP surgery and recovery, if you are accepted as a patient at Mayo, I would encourage you to get the first available appt for surgery. I had two 8’s and two 9’s and my Mayo Dr wanted it out asap. Had surgery two months after my biopsy. All lymph nodes, seminal vesicles and vans were clear. None of my tests showed any spread anywhere. I am nine weeks post op and waiting for my first PSA and Dr appt in mid October.
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3 ReactionsJust a caregiver, here, but I wonder what the recommendation would be if you saw a urologist at Cleveland clinic. I just know that’s how my husband started his journey at Mayo.
Also I think it’s emotionally helpful to have a team of doctors that you have full confidence in. I always remember that they call it the PRACTICE of medicine, because each individual can react so differently to treatments.
I am Gleason 9, 76 years, in a clinical trial with lupron and Erleada 6 months, then RP, then the same meds for 6 months and now 10 months no meds. More than 2 years ago my surgery doc said that my life expectancy was 4-5 years. Then the department head in the clinical trial said 5-10 years. I believe that both are just an educated guess and no one has a reliable crystal ball! I have heard that pluvicto is presently the last treatment available, yet some Guys have been on it for several years. This is the ultimate uncertainty for us but we have encountered uncertainties over the years. We have to handle this uncertainty as we have handled other uncertainties in the past, prepare for the worst and hope for the best. Best of Luck to all.
@andrejacques, you may be interested in this related Discussion:
- What is the recommended treatment after 6 Pluvicto doses?
https://connect.mayoclinic.org/discussion/what-is-the-recommended-treatment-after-6-pluvicto-doses/
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2 ReactionsHi @jt3451, have you decided on a treatment plan? How are you doing?
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1 Reaction@BuckyFestoon It's a wonderful story and I'm so happy for you. I am interested in getting Kwon's care and wonder how you were able to pay for it. Do you simply need a lot of money? Even if I moved to Rochester and got on an individual plan, I can't imagine how much all the copays and coinsurance on the (now) $18k PET scans would be by the time a year is up.
I had an option before my prostrate surgery to do seed implants. I decided against it because I was afraid it wouldn't work.