Considering where to get treatment for my prostate cancer

terriandralph
terriandralph Member Posts: 38 Member
edited February 16 in Prostate Cancer #1

I recently had a biopsy done and was diagnosed with prostate cancer, and so I'm doing research to determine where to get treatment. I did some more research and found that MD Anderson in Houston is rated very high. I live in San Antonio, and while we have a pretty good medical center here in town (I believe Mays Cancer Center is affiliated in some way to MD Anderson), I wondering how the two compare (I checked the reviews and rating and Mays Cancer Center doesn't really show up on the radar). I'm wondering if anyone has had treatment done in Texas? Thanks.

Comments

  • Old Salt
    Old Salt Member Posts: 1,505 Member
    #2

    What kind of diagnosis did you get?

    I would think that you should be able to get good care at both:

    Find an NCI-Designated Cancer Center - NCI

    MD Anderson is noted for its excellence in treating complex (prostate cancer) cases. Note though that much depends on the actual physicians that you will interact with. They move around...

  • terriandralph
    terriandralph Member Posts: 38 Member
    #3

    Thanks again Old Salt!

  • DaveTX
    DaveTX Member Posts: 19 Member
    #4


    https://csn.cancer.org/discussion/327325/considering-where-to-get-treatment-for-my-prostate-cancer

    So far I have been impressed with MD Anderson and the doctors I met with. They relooked at the biopsy slides my urologist did and I just had a PET scan which my urologist did not suggest/recommend. They work as a care team. When you have your first meeting you can meet with both a urologist as well as radiologist to provide you with the info you’ll need to help with your decision. I’ve elected surgery which will be the first week of December; I’ll let you know my thoughts afterwards. I do know that MD Anderson does have some type of help with hotel logistics. I don’t need it since I live in the Houston area.

  • terriandralph
    terriandralph Member Posts: 38 Member
    #5

    Keep me updated with your progress DaveTX.

  • rj5977
    rj5977 Member Posts: 3 Member
    #6

    I live in Georgia and had radiation locally. Then found out the cancer had spread so went to MD Anderson. One difference between MD Anderson and local facilities is that the local Oncologist treats all types of Cancer because then cannot have a staff comparable to MD while MD Doctors are specialized in a specific Cancer or Cancer region. The MD Doctors are very thorough and the communication is very good. I am very impressed with MD Anderson overall.

    Whatever you choose I hope all works out

  • terriandralph
    terriandralph Member Posts: 38 Member
    #7

    Thanks for your comments rj5977!

  • DaveTX
    DaveTX Member Posts: 19 Member
    #8

    Terriandralph, had my surgery yesterday and just came home. So far I doing ok. MD Anderson does have a hotel attached to their skywalk. It's called Rotary House. While the are other hotels close by, this one would be very convenient. I went over when I was there on Tuesday for pre-op to see if we could start there on Wednesday night since I had to be there at 5am. They were booked. There was a women from San Antonio that had breast cancer surgery yesterday as well that checked in when I did and stated on the same floor post surgery. Not sure where they stayed the night before, but you can have one person stay in your room post surgery. They have a recliner in the rooms. Where I was all of the rooms are private rooms. Nursing staff is fantastic. Probably took 30 seconds from me pushing the call button to someone showing up. Also learned from my surgeon that they all are MDA employees and are salaried. They do not get paid by the surgery or patient. Please ask me if you have any questions. So far I've been very impressed.

  • rj5977
    rj5977 Member Posts: 3 Member
    #9

    I live in Georgia and have been to MD Anderson twice, so far. There are multiple facilities not just the main campus depending on your needs. Rotary House books up in advance so you have to reserve a room as soon as you can. If you call instead of on line you may get a room. Other Hotels offer discounts for patients but you have to ask.

    One difference I noticed from local treatment centers is MD acts fast and results are fast very little to no waiting. Test scheduling thoroughness is impressive. The Dr. I have has been at MD for over 20 years, and is impressive. The response time to questions through My Chart is fast as well.

    Walking through the campus getting bearings you will be asked by everyone if they can help. MD is impressive in how and what they all do.

  • terriandralph
    terriandralph Member Posts: 38 Member
    edited December 2023 #10

    Thanks for the information DaveTX - hope your recovery continues to go well! Please keep me updated.

  • terriandralph
    terriandralph Member Posts: 38 Member
    #11

    Thanks for the information rj5977 - a lot of what you said seems to confirm what DaveTX said. The only thing I'm worried about is that the persons I have talked to at MD Anderson said they're pretty booked until January - I hope they can squeeze me in sometime before then.

  • rj5977
    rj5977 Member Posts: 3 Member
    #12

    The appointments are booked quite a ways out. I had to wait two months myself. Once you get the appointment date do not delay booking rooms especially at Rotary House they book quite a ways out too. Depending on your situation waiting may not be an issue but if you are like me once you know what is going on you do not want to wait. You may be asked your preference of Dr. so do your homework upfront. Some have been there quite a few years.

  • terriandralph
    terriandralph Member Posts: 38 Member
    #13

    That concerns me about how long I would need to wait, especially since I was diagnosed at Gleason 8. Hopefully things will work out.

  • terriandralph
    terriandralph Member Posts: 38 Member
    #14

    Lots to report.

    The visit to MD Anderson seemed to resolve some issues but added a new layer of indecision. The main thing is they found on my MRI that I had a cyst that sits on the top of my prostate, and it appears to be pushing into my urethra somewhat. This is concerning because 1. neither the urologist or the radiologist here in San Antonio saw it and 2. now it may require a TURP procedure to remove the cyst before radiation can be done (by the way, MD Anderson is not giving me the 50/50 chance for me to choose surgery or radiation - they are all in agreement I should be treated with radiation).

    Monday I am having a procedure done at MD Anderson to biopsy the lymph node that appears on the PSMA PET to be cancerous, and they also want to start me on hormone therapy. Another complication that has been thrown into the mix is that I may be a candidate for a trial. The trial will require a lot more visits to MD Anderson (San Antonio is a 3-hour drive from Houston), which will add to my expenses (gas, lodging, etc.) and require me to take time off from work (I started my current job only 6 months ago, and so I don't have many days I can take off from work). The trial will also require me to do another biopsy in about 3 months, more blood tests, and possibly additional MRI, bone scan, and PSMA PET scans. The good part of the trial is that MD Anderson would cover the cost for the apaludamide (which is quite expensive) and the niraparib medications, and anything else that would not be part of my regular treatment (the additional biopsy, for example). I asked for an itemized list of what costs will and will not be covered, but they are telling me I need to talk to their financial person for that information.

    When I first heard about the cyst, I was totally on board with having my treatment done at MD Anderson (I still am to some extent). It made me wonder if I would have had radiation done here in San Antonio, supposing the radiologist didn't know about it and therefore not taken the cyst into consideration - what complications could have surfaced if after the radiation he said that there was a cyst that needed to be removed (I know having surgery after radiation is complicated). Even if the urologist and radiologist here in San Antonio knew about the cyst, why didn't they tell me about it? Whether they knew about it or not or even if they knew about it and thought it wasn't an issue, I don't like that I wasn't told about it.

    Because of the distance, inconvenience, and expense that would come with having my treatment done at MD Anderson, I have been thinking of how I can plug what they have told me at MD Anderson into what could be done here in San Antonio. The problem I keep running into with that idea is - would I still be able to get the same quality of treatment here in San Antonio as I would at MD Anderson? Might there be other complications that could come along the way that here in San Antonio they would miss? I don't want to look back in a few years that, if I would have decided to go with having the treatment done in San Antonio, that things didn't turn out as well as they possibly could have at MD Anderson. If I decide to stay with MD Anderson and things don't turn out as well as I had hoped, I can always say "Well, I went with the best, and it just wasn't meant to be".

  • terriandralph
    terriandralph Member Posts: 38 Member
    #15

    I forgot to include in my previous message:

    The other thing that concerns me about having my treatment done at MD Anderson is - what if I have another situation that needs immediate attention (a few weeks ago I was feeling some chronic pain in my prostate that was diagnosed as prostatitis). I was able to see the urologist here in San Antonio the next day - even if I would be able to be seen relatively quickly by having to go to Houston, it would require that I take another day off from work (not to mention adding to my expenses (gas, possibly lodging, etc.

    Also, for the trial, everything has to be done in Houston. The radiation would have to be done in Houston, and so I would have to take the entire time off from work (6-8 weeks) and be on short term disability (which pays only 60% of my salary).

  • Josephg
    Josephg Member Posts: 455 Member
    #16
    https://csn.cancer.org/discussion/comment/1713330#Comment_1713330

    Remember that in a clinical trial, some folks get the meds upon which the trial is based, and the rest of the folks get the placebo. Unless, in your case, you are told that you WILL get the meds upon which the trial is based (which would be against all clinical trial rules), you have a ~50% chance that you will get the meds and not the placebo. I was given to choice to participate in a clinical trial, and I declined for that reason.

  • terriandralph
    terriandralph Member Posts: 38 Member
    #17

    I received a document about the trial - it didn't mention anything about a placebo, but it does mention that there will be two different paths that could be taken in the latter stages of the trial regarding the hormone therapy treatment. One group will be for the control group to continue taking apaludamide +ADT, and the other will take abiraterone + ADT + niraparib (as it was explained to me, it is the administration of the niraparib that is the crux of the trial).

  • Old Salt
    Old Salt Member Posts: 1,505 Member
    #18

    I participated in a (prostate cancer) trial and am still being followed (ten years later). But I do think that considering all the circumstances that you mentioned, you are better off NOT participating.

  • terriandralph
    terriandralph Member Posts: 38 Member
    edited February 16 #19

    Could you elaborate more Old Salt? Anything in particular you feel is a deal breaker, or do you just think cumulatively it's a bit too much?

  • Old Salt
    Old Salt Member Posts: 1,505 Member
    edited February 19 #20
    https://csn.cancer.org/discussion/comment/1713345#Comment_1713345

    your Feb16 posts formed the basis for my opinion.

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