Prognosis and how you were informed

bezbub
Occasional Contributor

Prognosis and how you were informed

Just curious to how you were informed.I should state that im not bitter or upset even tho I would much prefer a different prognosis than the one I was given. For your information I have a stage 4 glioblastoma brain tumor. Now I do realize that what it is, is what it is, im happy for the life ive had and still getting the most I can with what I have left:) My beef is how I and my wife were told by the young doctor, the following is what I would say is almost verbatim," well you have a stage 4 glioblastoma brain tumor, and without treatment you may have 3 to 6 months, with treatment maybe 12 to 14 months" No lead up to this, as I said it is what it is, but compared to some of the other staff, he was one cold fish. He sure as hell didn't have any bedside manner or empathy. The encologist I saw straight after this guy was the one that should have told me, because his approach was so different than the other, ie extremely professional and a genuine nice guy. cheers Doug
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topenddownunder
Contributor

Re: Prognosis and how you were informed

Gday Doug... I was diagnosed with NSC lung cancer stage 4 with secondary in pelvis.It was more accidental than through any complications. I went for annual check up and my wife mentioned to the doc that I was a little out of breathe when working outside in the garden.BAM...Xray and Cat scan that day!!!Lung wash..pet scan..surgeon visit..2 x Biopsies..etc etc etc.. the first "Oncologist" was probably more of an intern....fresh from Uni I think.3 months left to live ...untreated...12 at best...WOW....Now I have a very good Oncologist who gives me a far better outlook. we have had a change in Chemo`s, had radiation on hip, and achieved a 60% reduction in tumor so far.Just coming up to 12 months now, and I think the worst of it is the Chemo side effects, but I am cautious. All the best Greg
bezbub
Occasional Contributor

Re: Prognosis and how you were informed

Yeah it comes as a "excuse me?" no lead in to it, and going i got what ? how long?. Same situation new guy i guess and no lead up to the shock :) Well it sounds like you may get a little bit of a reprieve which is great news. When i got the news of no new growth i thought, hang on a minute, thats gunna stuff up all my workings for finance's. Just some of the stupid things you think of, i was all set for a max of 12 months, looks like i get a little more for which im thankful. On the upside i have all my stuff in order, ive even picked out my coffin, macabre ? nah not really i have to say im enjoying life at the moment. Ive also re thought the things i thought were important in life, i just wish it hadnt taken this to do it :) Cheers Doug
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Jules2
Super Contributor

Re: Prognosis and how you were informed

With my first cancer I was given the possibility of a month to live or X amount of years. This news was given to me by an incredibly caring GP. I had an appointment to get the results from my 2nd biopsy and he made sure I had someone coming in with me and also phoned my father to come and be with my Mum and myself. He then urged me to make a 2nd appointment in 3 days time because he said I wouldn't absorb all that was being said to me. Incidentally, he was the junior doctor in the surgery that I went to and if not for him I am sure I would be dead. It was he who pushed to get a biopsy done on my lump and 2 other doctors were saying no. Second cancer is a different story. Julie
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bezbub
Occasional Contributor

Re: Prognosis and how you were informed

What a difference it makes with a halfway decent doctor, ie bedside manner, even with a bad prognosis.Its like chalk and cheese the manner in which they treat you. Having badmouthed some I have to say that in general most staff are fantastic. Well I can say Julie is I hope for a good result somewhere for you, and if not then I hope you have had a good life and no regrets, which is how I view it all, and still enjoy each day, hrmm except chemo days:) oh and being bogged up!! Cheers Doug
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Jules2
Super Contributor

Re: Prognosis and how you were informed

Doug Thank you, I should have said that was 26 years ago and that I am lucky enough to have survived the X amount of years. Then diagnosed with another different cancer and MS in the middle. Ran over a chinaman I think!! I agree on the whole the medical staff are great ... just is hard when getting bad news delivered in what can be seen as lacking compassion and empathy. Yet, I often wonder how it must be for someone having to tell someone else the bad news. Julie
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Stevenic
Not applicable

Re: Prognosis and how you were informed

Hi Doug, My husband and I were recently told the good news and the bad news. The good news - High grade Pleomorphic Rhabdomyosarcoma of the spermatic cord, very rare, very aggressive. Unable to get a clear margin when he took the tumor out, so radiation therapy. This will mean testosterone supplements as the remaining testicle will be compromised by the radiation. Expect symptoms not unlike the menopause. That was the good news!!! Bad news major surgery to remove lymph nodes 8 hour operation. Have to sell one of our kids to pay for it! Has to be done pronto. Forget ejaculating that's in the past. It's called an RPLND. You are cut from the breast bone to below your tummy. Intensive care for a couple of days and a week to ten days all up in hospital.Then chemo. Dr very excited will probably write a paper on it. Couldn't contain his enthusiasm. Unaware of what stage my husbands cancer is, awaiting P.ET scan results. If I hadn't done some research on Sarcomas we would of left his surgery unable to tell you what the actual name of the cancer we are dealing with. Really shocked and frightened! From my research prognosis poor! I just hope this Doctor is a good surgeon because he sure isn't a good communicator. Julie
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bezbub
Occasional Contributor

Re: Prognosis and how you were informed

Well I wish the best for you both,it really is a journey and you can really only take it week by week. For myself I looked at the worst case scenario and then took all the good news on face value. It worked for me but obviously you need to do whats best for yourselves. Oh and of course I'm still here, beaten one expiry date and working on the next :) Cheers Doug
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lɛftəʊvə
Occasional Contributor

Re: Prognosis and how you were informed

Hmm a train trip 600 km trip to Perth managed to get there with 2 minutes to go before the 4 pm appointment and no doctors there they had an emergency so back the next day thinking I was in for another biopsy but no. I was informed that I had cancer by a doctor I had never met before. Straight out and to be quite honest I duly accepted it and next day went back home made a doctors appointment managed to get medical history and 4 years previously no one noticed my cancer levels had doubled. The year they found it it had doubled again and a new doctor noticed. So it was close only 2 points away from being a nastier problem and I have had the treatment now await the results. Well things got going at that point but I have not managed to get back to Perth for the 3 minute appointment to inform me how the cancer is going/or not going. Maybe when I get back to Perth in April I will go find out.
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