When do you get assigned an oncologist?

Posted by chipe @chipe, Aug 24 7:50am

Hi all,
I have a surgeon and a urologist, but no oncologist (yet?). So when does an oncologist get involved? When it's time for hormone therapy or time for radiation? Thanks.

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@bens1

@chipe after my MRI, and by the time my urologist did their biopsy and recommended either surgery or radiation, I had already done enough research to decide on radiation and the type of radiation machine I wanted to use. I contacted five radiation oncologists that used that machine (my urologist had heard of the machine but nothing more), provided each of them with my MRI report, urology report and my genetic test (Decipher) and proceeded from there via in person and zoom meetings.

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This is very helpful. Can you explain Decipher a little more please?

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@chipe my layman's explanation is that it is a genomic test that compares the visual results of your biopsy to the results of other people's biopsies who have similar attributes to yours. There are a few of these genomic tests out there but I was told by two radiation oncologists that the difference with Decipher was that it uses a larger data sample size than the others and that gave it an advantage. For more information: https://decipherbio.com/.

Additionally, I wanted a way to get another opinion outside of my urologist who did the biopsy, so I asked him to provide the biopsy material to Decipher. The test result is easy to read and doctors DO USE the results to confirm or change their treatment decisions and in some cases that can mean the difference between ADT or no ADT or other modes of treatment.

Where I could, regardless of the doctor's experience, I wanted a second opinion for whatever tests and opinions were being given. Trust but verify as doctors are not infallible.

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@bens1

@chipe my layman's explanation is that it is a genomic test that compares the visual results of your biopsy to the results of other people's biopsies who have similar attributes to yours. There are a few of these genomic tests out there but I was told by two radiation oncologists that the difference with Decipher was that it uses a larger data sample size than the others and that gave it an advantage. For more information: https://decipherbio.com/.

Additionally, I wanted a way to get another opinion outside of my urologist who did the biopsy, so I asked him to provide the biopsy material to Decipher. The test result is easy to read and doctors DO USE the results to confirm or change their treatment decisions and in some cases that can mean the difference between ADT or no ADT or other modes of treatment.

Where I could, regardless of the doctor's experience, I wanted a second opinion for whatever tests and opinions were being given. Trust but verify as doctors are not infallible.

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Thank you so much for this clear and understandable explanation!

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@jeffmarc

If you live in Ontario Canada, there are no GU oncologists there. Medical oncologist are the only doctors available. There was one genito urinary oncologist in Vancouver.

Canada treats prostate cancer patients quite differently than the United States, some procedures are just not available.

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Protate Cancer in Canada gets only 2-3 % of the funding breast cancer does in Canada ....despite PC killing more people ! Got to love Canada ! Land of the Woke even in research.

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@vancouverislandhiker

Protate Cancer in Canada gets only 2-3 % of the funding breast cancer does in Canada ....despite PC killing more people ! Got to love Canada ! Land of the Woke even in research.

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Yes, I agree, the fundraising gap is frustrating.

It long predates any tired "woke" stereotype. I think it's more because of the ageist misconception that prostate cancer is a slow-moving "old man's disease" that people usually *with* instead of dying *of,* while breast cancer often hits women as young as their 20s or 30s. Also, it took a lot longer for PCa fundraising to mobilise with events like Movember; breast-cancer fundraising has a head start of decades on us.

That said, the two cancer families have a lot in common (like hormone-sensitivity and a strong attraction to bone metastases), so I imagine there's some cross-pollination in the two research communities.

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After my surgery and recovery ... my urologist at Mayo (Arizona) asked who I preferred to follow me, him or a medical oncologist. I chose the medical oncologist and only see the urologist for periodic urologic follow-ups.

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ask questions I didn't do my home work and I m fucking miserable , I would have done radiation but I was rushed into surgery a week later after I found out , now hormone treatment , 8 months into this had lupron shot and Erleta probably spelling that wrong , but my PSA is at .06 where it was at a 15.08 but I feel as the urologist and surgeon got together and rushed me . radiation would have been a much easier way. the side effects that I personally am going through, make me wonder at this point would I be crazy to say that took 60 years to get cancer , so wouldn't make sense that it going to take that long to come back , I really want back my life

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@ltdan2021

ask questions I didn't do my home work and I m fucking miserable , I would have done radiation but I was rushed into surgery a week later after I found out , now hormone treatment , 8 months into this had lupron shot and Erleta probably spelling that wrong , but my PSA is at .06 where it was at a 15.08 but I feel as the urologist and surgeon got together and rushed me . radiation would have been a much easier way. the side effects that I personally am going through, make me wonder at this point would I be crazy to say that took 60 years to get cancer , so wouldn't make sense that it going to take that long to come back , I really want back my life

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I'm so sorry for your bad experience. Since they gave you surgery, I hope that means they caught your cancer when it was still at an early stage.

The HERO study showed Orgovyx (pills) to be as effective as Lupron injections, but without some of the topical side-effects like swelling and rash, and also that Orgovyx lets your testosterone come back faster after you stop; however, it's much more expensive in the U.S., so your insurers might not support it, and there may be other health reasons your cancer team is steering you towards Lupron.

Erleada has been a game changer for me (stage 4 oligometastatic); together with ADT (Firmagon, then Orgovyx), it has stopped cancer progression in its tracks for 3 years so far and put me into what my oncologist called "full remission" (but with pharmaceutical assistance, of course).

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My opinion is immediately on diagnosis of cancer. My experience was initially not the best. Diagnosed Dx with BPH at a major university medical center, Tamsulosin prescribed by a NP with “it may take months for positive effect”. Progressively increasing symptoms, months later complete blockage of the urethra, finally a nodule found on DRE. Appointment with urologist and MRI could not be made for 3 weeks. I asked when I would be referred to an oncologist, answer was after the MRI and the urologist and his team review the finding. Found a new medical system, saw both a medical and radiological oncologist and had MRI within 4 days. Simple lesson is you, and hopefully your family, have to manage your care, and if it not does not sound right challenge it strongly.

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Back in the summer of ‘23, my PCP was concerned about my PSA and wasn’t sure why it was bouncing up and down, he had me get a biopsy. He then referred my to a surgeon, who looked over my results and told me that surgery was not an option and referred me to an Oncologist. He took over my treatment and discussed my options. I decided on high dose Proton radiation with 3 hormone shots. I rang the bell in May of ‘24. To date I am doing very well and happy with my results.

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