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Thread: Possible/probably mets, no radiation for you!!! Update.....

  1. #1
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    Possible/probably mets, no radiation for you!!! Update.....

    Well, we've had a heck of an afternoon, just a nightmare made in Hell.

    Radiation Guy acted as if we had no business being there and taking up his time.

    Came right out and told Hubby that 'you're not a candidate for radiation, IMO', 'you've got metastatic PCa, IMO and it's all over your body so how can I radiate you?'

    He said that he cannot prove that the shadows on the bone scans are cancer but he's betting they are!??!!?!?!?!? and he's only willing to rescan/restage in another six months, after 9 months of hormone therapy.

    (His theory is, if the bone scans do not change, then they're old injuries.....then he'd consider radiation, maybe.

    If they shrink or grow, it's proof of cancer and he won't do anything.)

    When I asked, why wait?? He got all snooty and said "so you purport to be an expert in PCa do you??" Ah, nope but I was hoping for the enduring result of surgery and radiation.

    He scoffed at that, said he would never have operated on Hubby, that Dr. Nam was wrong, wrong, wrong and he'll be seeing him tomorrow about it.

    He told Hubby that his best bet is hormone treatment, chemotherapy and some trials, citing a dendritic (sic) one.

    When I asked about the study he informed me that it's closed and that Hubby wouldn't qualify anyway. ?!?!?!?!?

    He painted a pretty miserable picture.....Hubby sure knows he's got a positive node now!....and then gave us short shrift out the door.

    On the way out, I said " well, book the scans etc" and get us an appointment for 6 months from now. He crossed his arms and with an exceptionally miserable look on his face, he turned to my Hubby and said "Sir, it's up to you, after all you'd be my patient"!!!

    My Hubby started to laugh (at the absurdity of the whole thing, I think) and said "sure, book the appointments' and Dr. AH said 'why so you can cancel them?"

    He also informed me that if I "went shopping" he's sure I can find someone to radiate my Husband but at what cost!

    I wasn't rude, just questioned a couple of his comments and asked about the number of Grays he'd use....if he were to help.....btw, he'd use 66 Gy.

    I was very surprised to NOT be offered option A or option B, with him having a preference. That's the normal response from a specialist up here.

    We both felt that we weren't given any help at all today.

    Any thoughts? Suggestions?? Comments??

    Thankyou, as always, in advance.


    Jean222

    PS Sorry this is sooo long, thanks for reading it.

  2. #2

    arrrggh!

    That radiation doc sounds like the opposite of mine, in demeanor.

    I'm sorry to hear about the ordeal, and everything being said so bluntly.

    That one trial he mentioned is indeed closed to new participants. But there are lots of other trials. You can see ones just for cancer at http://www.cancer.gov/clinicaltrials/search
    and you can narrow down by type and stage of cancer, and location. Aren't you guys in Canada? The database includes Canada.

    I would seek out a second opinion on radiation--not to shop for someone willing to do it at your request, but just to verify the opinions of this doctor. I know it's hard, but I would try to separate out what he said from how he said it, and concentrate on the message rather than the medium. Separate out the core message and see if that's what doc #2 says. That's if your husband wants to keep going along this line of inquiry.

    Best wishes to both of you.
    Replicant

    Dx Feb 2006, PSA 9 @age 43
    RRP Apr 2006 - Gleason 3+4, T2c, NXMX, pos margins
    PSA 5/06 <0.1, 8/06 0.2, 12/06 0.6, 1/07 0.7.
    Salvage radiation (IMRT) total dose 70.2 Gy, Jan-Mar 2007@ age 44
    PSA 6/07 0.1, 9/07 (and thereafter) <0.1
    http://pcabefore50.blogspot.com

  3. #3
    Jean, I am shocked at the treatment you and your husband got. Totally shocked!! Our radiologist oncologist was very PRO having my husband (Gleason 9 with lymph metastasis) treated with IMRT. The first radiologist oncologist was willing to treat, but hesitant, because he wasn't convinced it would really be a benefit, but he was very kind and supportive, whereas the 2nd radiologist oncologist was very PRO treatment and wanted to treat the prostate as well as lymph areas. He also said that he had the best physicist in the state. This is important because the physicist is the one who figures out the radiation angles, etc. So my husband was radiated 2 months post attempted prostectomy (the surgery was aborted after lymphs were found to be cancerous) with 40 treatments. We have read that ADT plus radiation has better result that with just ADT treatment.

    Jean, can you go to ANOTHER radiology oncologist?

  4. #4
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    Perhaps a bit off subject, Jean, so forgive me. It sounds to me like you found a physician created by socialized medicine. He gets paid the same whether he treats your husband well or poorly. A lesson all of us in the USA should think hard about with the proposed health care changes coming from the Obama-Kennedy camp. End of small rant....

    However, Jean, I'd be a little surprised if you were to find a rad doctor who would recommend radiation for Hubby at this point. At least for a curative outcome. As mentioned above, my impression was that localized metastasis is assumed to be proof of micrometastasis everywhere. But I certainly might be wrong.

    God bless you two, Jean....

    mkane09
    PSA 6.48, biopsy Gleason 3+4, robotic prostatectomy 9/17/08, pathology Gleason 4+5, pathologic stage T2c, positive margins, SRT completed May 22, 2009. 1st post-radiation PSA, 8-4-09, <0.06. 2nd post-radiation PSA 12-22-09 <0.06. PSA, July 23, 2010: <0.06. PSA, January 10, 2012: 13.90. Re-test, February 6, 2012: 16.47. April 6, 2012: 25.6. PSA, May 2, 2012: 37.74. PSA, May 27, 2012: 37.4. PSA, June 17, 2012: 51. PSA, Sept 27, 2012: 110.24. PSA, January 28, 155. May, 2013, Well, you get the idea...

  5. #5
    Jean,

    Ignore my request for more info in the other topic. I posted before I read this topic.

    I am so sorry for your poor treatment at the hands of a radiation oncologist that supposedly has a desire to to serve patients facing crisis.. Like Replicant and Mkane, I think the information was probably very useful but the delivery was unconscionable. His desire to re-assess the bone shadows (which are very subjective without a bone scan history) is probably a good, solid, plan.

    If the future scan is on your side (no change), I would likely proceed with a second opinion and go to another doctor. For one thing this does not sound like a guy that would be at all open to discussing dose or anything else.

    PS: While it does not mitigate his offensive nature,, I wonder if he was venting on you for his anger at Dr. Nam?
    History: PSA's every 6 months 6.7 neg biopsy - PSA 16.6 neg biopsy - PSA's 8.2, 8.1, 8.7 - Biopsy showing 4+4 Gleason 8. Lap RP Apr 2004, age 52 All neg margins, nodes, and structures. (T2a). Post RP PSA: every 6 mo. <.1 until Feb, 08 (46 mos) PSA .1 - I then got sensitive tests beginning 2008: Feb .06, May .09, Jun .10, Aug .10, Nov .15 - SRT Dec 2008
    Post SRT PSA 2009 Feb .10, May .09, Aug .06, Dec .04, 2010 Mar .04

  6. #6
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    Hi again,

    Replicant, I got his message, loud and clear but his challenges to me about men having SRT "AFTER" surgery really shocked me, as did his IMO unethical rant about Dr. Nam and the fact that Hubby shouldn't have even had surgery.

    Thankyou for the links to trials that are open, many have limitations what would exclude Hubby at this point but we'll do what we can when we reach that point. Hope it's a few years away.

    Pat, thankyou for your kind words. Seems the only person who isn't aware that ADT and radiation are better is this Rad Guy.
    Yes, we can see as many docs as we wish under our health care.
    If Dr. Nam suggests another, we'll try them out, do what he suggests.

    mkane, You're forgiven...lol...always. I don't think our medical education system turns out jerks, just some who graduate are jerks. Most of our doctors are fine, compassionate people. This guy is an arrogant, know-it-all who sees my husband as an old, sick dude who should have been getting fitted for a casket instead of taking up his time. A rare bird indeed but could be found in any medical system.

    Bet he didn't turn down our tax donation to his highly subsidized education though! Should have asked him that.....hmmm!

    We're not looking at 'curative' at this point just a chance to keep going, in whatever passes as 'good health' and QOL til something wonderful comes down the pipe for PCA. Hope Hubby is still here and well enough for it when it comes.

    Hawk, you must have been listening to Hubbys' conversation yesterday, he won't be treated by this guy, no matter what......thinks he'd screw everything up just to say "I told you so". Besides, this Rad Guy didn't ever say that he'd radiate Hubby, just that he'd prove it to be bone mets.

    IMO, this guy should be reported for a variety of reasons but we have much more on our plate at the moment. I will however, keep the details available for another day.

    At Hubbys' request, I called Dr. Nams' office on Friday and we have an appointment to see him on Monday morning.

    We'll get his point of view, his suggestions and take it from there...Hubby is just hoping they don't 'circle the wagons' and cover for one another.

    I really wonder about the ethics of refusing 'resources', yes that's what he said, on a paitent who albeit is not well, but certainly not at imminent risk of dying!! Is it even legal?? Questions that will keep me busy for a few days, I suspect.

    Thankyou everyone for your support.

    Hope Monday is a better day.


    Jean

  7. #7
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    Hubby and I saw Dr. Nam this morning.

    We will be referred to another Rad Onc who will proceed with the radiation at this point in time.

    Dr. Nam was trying to be diplomatic and pour oil on troubled waters but was obviously shocked by the behaviour of the first Rad Guy.
    Although they had spoken, he was not aware of much of what had transpired, such as throwing the chart down and inferring that Hubby was not worthy of 'resources'.

    Dr. Nam said we could either wait the 6 months and then be treated by the first guy, Hubby refused as he has no faith/trust whatsoever in that doc.

    Dr. Nam will be referring Hubby to another Rad Onc who will go forward with the radiation at this point in time.

    I did ask if Dr. Nam was 'using these resources' for QOL or to increase my Hubbys' lifespan and he responded "both". There will be a short period of regression due to the radiation but it shouldn't be severe nor long lived.
    Same or similar to what you have all shared on this forum many times.

    It was quite apparent that Dr. Nam feels 'now' is the correct time, not waiting 6 months down the road. It took him awhile to admit that there would be a difference in outcome for my Hubby, as he was trying to not criticize the first Rad Guy.

    We are all aware that we are not using SRT for 'curative reasons' but to prolong my Hubbys' life and QOL.

    Hopefully, something wonderful will be discovered while he's eligible to make use of it.

    Thankyou again, friends.


    Jean

  8. #8
    Jean, I am so glad your husband is going to another rad oncologist! And I'm glad that your hubby will be treated soon with radiation (IMRT?). The sooner the better. Studies have shown that there is a longer survival rate with hormone treatment and radiation.

  9. #9
    Jean,

    I so badly wish you the best. The problem for me is that in all of my reading, consultations, and research over 6 years, I have never heard of a doctor recommending radiation for anything but palliative care for pain if there is metastasis. How is radiating the prostate bed supposed to help?

    I have also never heard of surgery if metastasis was strongly suspected.

    Dr. Nam's recommendations are TOTALLY baffling me.
    History: PSA's every 6 months 6.7 neg biopsy - PSA 16.6 neg biopsy - PSA's 8.2, 8.1, 8.7 - Biopsy showing 4+4 Gleason 8. Lap RP Apr 2004, age 52 All neg margins, nodes, and structures. (T2a). Post RP PSA: every 6 mo. <.1 until Feb, 08 (46 mos) PSA .1 - I then got sensitive tests beginning 2008: Feb .06, May .09, Jun .10, Aug .10, Nov .15 - SRT Dec 2008
    Post SRT PSA 2009 Feb .10, May .09, Aug .06, Dec .04, 2010 Mar .04

  10. #10
    There are some radiology oncologist who feel IMRT won't help once there is metastasis, however, if there are others (such as my husband's radiology oncologist) who feel IMRT definitely benefits the patient by killing the prostate cancer cells as well as areas of metastasis. My husband had metastasis to the lymphs and possibly a bone met and these sites were radiated besides the prostate. The side effects were minimal. We have since read studies showing that by combining both hormonal therapy AND radiation therapy on advanced cases, patients have a longer survival curve.

  11. #11
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    Thanks PatC and Hawk,

    Yes, Dr. Nam agrees that the combination of surgery and radiation can give a patient better QOL and sometimes prolong their lives, even in the most dire circumstances. We can only hope for the best.

    Hawk, I think part of the rationale for the radiation is that there was a bladder tumour found during surgery and possibly localized radiation to the pelvis will prevent it from growing/causing further problems etc. for quite some time. Also, the more cells they can kill off, the better....it was quite diffuse but no proof of distant mets. If they're 'local', maybe it's worth the effort, certainly nothing to lose.

    ***think we're hitting another set-back.

    We were to get an appointment when it was all set up, now we've had a call to meet with Dr. Nam at the Cancer Centre on Thursday at 10.

    I sure hope they aren't going to refuse him treatment or that we're going to be seeing the first Rad Guy again.

    Please cross your fingers for us, pray too if you wish.

    I'll post as time allows, I'm spending tomorrow a.m. with my Liver Guy to see if my Liver/Pancreas are still clear of cancer.

    It's time for me to don my bathing suit and sunbathe while scaring the neighbours!

  12. #12
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    Hubby will be having 6 1/2 weeks of IMRT, his Planning Appointment is tomorrow afternoon.

    Not certain but we think it'll start sometime next week.

    What a difference between the first and second Rad Guys!!!

    Apparently, there are studies that show a better result with radiation and surgery as opposed to one or the other.

    Doc says 3% chance of disability from radiation, it shows up about 18 months after the radiation, not right away.

    Hoping that Hubby is in the 97% of patients who aren't bothered by it in the future.


    Jean

  13. #13
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    We saw a different Rad Onc last Thursday. What a difference in mannerisms and ideas!

    Hubby will be starting his Radiation on July 6th, for 6 1/2 weeks.

    Why 6 1/2 weeks?? No idea.

    The reason being, to get an 'enduring response' from the combination of surgery plus radiation.

    Hopefully, his next PSA will be at zero or undetectable, and stay there for a very long time.

    Fingers crossed and prayers said!


    Jean

 
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