Anxiously waiting

[Stone123]

Hi! I’m new to this forum tying to learn all I can for my husband. He was recently diagnosed with advanced PC, after a large tumor (3.7 cm) and the cancer has also moved to his nodes. He has a lot of symptoms, shortness of breath, bone pain, and a lot of coughing. I was wondering if anyone could tell me, is it normal for the biopsy to be scheduled a month later? The doctor hasn’t given him anything, but I seen in the visit notes he plans to do radiation and Lupon. I was wondering if this normal procedure to wait this long? Thanks for any answers

[JohnInTheMiddle]

1. What kind of doctor saw your husband? Is the doctor a radiation oncologist, a medical oncologist, or perhaps a urologist or even your family physician?

2. Has he been prescribed pain meds by a pain specialist?

3. It's not clear from your notes whether your husband has had an x-ray or a CT scan or an MRI or anything?

4. Has your husband had blood work to measure his "PSA" - which is the standard measure that everyone likes to discuss and which gives an idea as to the level of prostate cancer cellular activity in the body.

5. You are implying that the apparent prostate cancer has already metastasized, per your mention of "nodes". It would seem that urgency is the order of the day and that waiting for a biopsy when any cancer has already escaped, while important, shouldn't to my thinking hold up initiation of ADT etc.

6. Lupron is expected as ADT certainly, but why not Firmagon/Degarelix (also an ADT but different), which is known for working faster and is appropriate in urgent situations?

My heart goes out to you and your husband. It's overwhelming! My best wishes that you can both get ahead of the situation in the coming days and weeks.

[witantric]

Can he be given a Lupron shot to stop the spread while the procedures are being lined up and scheduled? I have heard that done

[Stone123 in reply to witantric]

I’m messaging his dr now with the same question. I didn’t know if it was possible or not. Ty

[Stone123]

Yes, my husband had a MRI, which showed a tumor rated 5 and it also showed that it has metastasized to his lymph nodes. He is seeing a urologist. We feel like sitting ducks right now! He’s not on pain meds yet, but tomorrow I will be reaching out to his GP for a referral. Ty for replying

[Tall_Allen]

How do you know it's spread to the lymph nodes? Pelvic lymph nodes or elsewhere? Was there a CT scan? A PET/CT? A bone scan/CT?

If you already know there is cancer in his nodes (you don't say how you know), he does not need a prostate biopsy. His treatment will be the same with or without a biopsy, so the biopsy is an unnecessary delay and unnecessary invasive procedure.

If he has had imaging and they know it hasn't spread to his bones, you have to look for another cause for his bone pain and other symptoms.

[JohnInTheMiddle in reply to Tall_Allen]

Apparently he is under care of a urologist. As such your point about unnecessary delay is crucial. They should see a medical oncologist - because as you have explained before, the cancer is now becoming a system problem involving biological processes beyond the prostate. This is no longer a "mechanical prostate problem". (I'm reminded of the aphorism "when all you have is a hammer, pretty soon everything begins to look like a nail.)

[Tall_Allen in reply to JohnInTheMiddle]

How long will it take to see the oncologist? If it takes that long just to get a biopsy, it sounds like further delays. Sometimes insurance headaches force the patient into directing his own diagnosis.

[Stone123 in reply to Tall_Allen]

He had an MRI that showed a large tumor grade 5 with definite extraprostatic extension/invasive behaior. His report says suspicious for metastatic pelvic adenopathy with lymph node involvement. His PSA is around 9

[Tall_Allen in reply to Stone123]

1) Given that he has had bone pain, he should rule out bone metastases first. He can usually get a bone scan/CT within a week. If positive, he should start on Casodex, followed in 10 days by Lupron. Biopsy is unnecessary. Then docetaxel and abiraterone or darolutamide. If fewer than 5 metastases, he should also have prostate radiation.

2) If negative for bone metastases, he should have a PSMA PET/CT too, if possible. If positive only for lymph node metastases, whole pelvic radiation can start along with 3 years of Lupron and 2 years of abiraterone.

3) If both imaging studies (bone scan and PET) are negative, he should have the biopsy. He should get Casodex ASAP because of the extraprostatic extension.

[Teacherdude72 in reply to Stone123]

You keep stating: tumor grade 5. Do you mean Gleason 5? Because the tumor grade only goes to 4.

Also, you and your husband need to demand seeing an Oncologist. They are Cancer trained. Urologist not so focused on Cancer.

[NecessarilySo]

There are things he might do while waiting. See my bio, (click on my username), read about lycopene and heat self-therapies.

[hfl20]

I don't know what your situation is regarding age, insurance, location, etc. but in my case I was having doubts and concerns about the delays with my local urologist so I called and made an appointment with a major cancer center (MD Anderson was my choice). I traveled there for my 1st appointment with a urologist and within the next 4 days had a (better) MRI, biopsies, and lab work. About 20 days later I went back for appointments with urologist, medical oncologist, and radiation oncologist, had more blood labwork (for the MO), abdomen CT scan, bone scan, and PSMA PET scan all within 5 days. I also started ADT that week at recommendation from MO. Both of those trips I stayed at their on-campus hotel that is attached by skybridge to the clinics which was made the whole process less stressful.

[hfl20 in reply to hfl20]

I might add that by the end of that second trip I was offered treatment suggestions (in my case surgery, IMRT, or IMPT + 24mo ADT) and had plotted the course for my treatment.

You mentioned radiation. My suggestion is that you spend a lot of time researching the the various current radiation treatments. Damage to nearby organs and side effects can vary drastically from older radiation techniques to what is currently available. Likewise with the ADT drugs - there are several options. There have been a lot of advancements in the past few years in prostate cancer diagnosis and treatment.

[Sailameme]

Everything the guys have initially remarked upon is pure information to be acted upon. Where are you? If your in England I know from my friends experience that things run slower, you have to kick them into gear sometimes. If you don't ask you don't get. Hope things get better.

[quietcorner in reply to Sailameme]

Yes, Stone123 used the term GP which made me, also, think they are in England. Stone might, depending on financial situation, want to seek out a private pay MO/specialist - visits are cheap, like $50 a consult - to get the Casodex prescription ball rolling.

Here in the US my husband had blood test in late March with high PSA of 7.4. In late April had an MRI. June had a biopsy with urologist, and it took 4 weeks - late July - for the results to come back. From that point, 2 weeks to see a specialist, MO Medical Oncologist, and got PSMA scan and genetic testing. Returned to MO middle of August, was given a treatment plan. A second PSA test showed 10.4; rapid increase in short time.

Left the MOs office that day, went home, and realized that my husband still had no type of ADT prescription, and because at this point it would be a necessary evil, called the MO's office and asked to begin ADT. The MO's office said to return a few days later for Lupron injection.

In retrospect, I see how things were delayed, but until the biopsy results came back as cancerous, I don't know if a doctor would begin ADT. What irritates me the most is the long stretches between appointments. We live in Florida and despite my husband having traditional Medicare with a great supplement - meaning he can go anywhere and have practically any treatment done - there were still delays, and he fell through the cracks numerous times in our broken healthcare system. I was on the 'phone a lot, on hold, trying to finagle appointments. On two occasions I actually drove to the doctors' office in person to make appointments, because my calls weren't being returned.

Reviewing dates of what I just posted, it took 4.5 months from the time my husband got the abnormal PSA test results to actually starting ADT.

[j-o-h-n]

Greetings Stone123,

Would you be kind enough to update the bio section of your main login/description section. All info is voluntary but it helps you and help us. Thank you and a Happy New Year to all.

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 12/30/2023 12:52 PM EST

[Stone123 in reply to j-o-h-n]

Yes I will update. Thank you everyone for all the info

[SteveTheJ]

Is the delay because of the end of year holidays? If not I'd say it's abnormal to wait that long. Others might have more info.