How long did you wait for second (third) opinion ?

Posted by surftohealth88 @surftohealth88, Apr 25 4:34pm

We are really confused with the whole process of asking for consultations. We waited 6 weeks to have consultations with oncology surgeon and now we are advised to have consultations with radiologist and with specialist that does local ablation. They both have openings for consultations like end of August and September. It just looks awfully long time to get opinions :(. I honestly feel like I am stuck in some PC purgatory ... How long you waited to be seen for consultations ? I mean, my husband is not "critical" case but having IDC and cribriform is not trivial thing.

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Profile picture for surftohealth88 @surftohealth88

Yes, we live in CA and will stay here as long as we can (it is becoming awfully expensive to live in the Bay Area ). It is also so overcrowded that we have to wait for weeks for any other app. (in general med. practice). Any time we need a specialist (like orthopedic surgeon or allergist for example) , app. are 2 or 3 months out. And all of that with PPO , we can choose any place to go and do not need referral. There are many doctors that do not accept new patients, period, queues are so long :(. It applies to private practice as well as to medical groups and it is especially long wait for 5 star doctors. It does not matter if it is a Zoom call - wait is so long. I lately resorted to go to local mini urgent care if I need app. for simple sinus infection etc., otherwise would be in agony for a week or longer just to have zoom call with P. care. The same applies to dentists - any doctor or dentist that is top notch and well known and experienced is overbooked. But in situation like this it just so hard to wait ...

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Hi, My husband was diagnosed in early May with Gleason 7 3+4, stage II contained in prostate. PSMA pet scan and MRI show no spread. Had appointment with a top notch urologist in July and appointment with radiologist next week ( even though we have decided on surgery). We were told there will be another 3 to 4 months for surgery. so 6 months from diagnosis. Doctor has refused to prescribe any medication during this wait. We live in Canada. My husband is calm and cool but i am so very stressed by the wait...

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Profile picture for shalom7777777 @shalom7777777

Hi, My husband was diagnosed in early May with Gleason 7 3+4, stage II contained in prostate. PSMA pet scan and MRI show no spread. Had appointment with a top notch urologist in July and appointment with radiologist next week ( even though we have decided on surgery). We were told there will be another 3 to 4 months for surgery. so 6 months from diagnosis. Doctor has refused to prescribe any medication during this wait. We live in Canada. My husband is calm and cool but i am so very stressed by the wait...

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I completely understand you and the situation with us is very similar : (.
My husband is pretty calm and patient and I am at my wits end.
If I did not have this forum which is abundant with such caring and extremely knowledgeable people I honestly don't know how would I have kept my sanity during all of those months. I also used this waiting period to educate myself about PC treatments and recovery. Our surgery is next month and after such a long period of waiting all of the sudden it looks "so close", that I am already in a state of panic. I am not worried about surgery per se, or side effects, I worry about a final pathology report since sometimes it does not match biopsy findings. I am not mentally ready to hear about potentially more worrying features present, but again, I will never be, so one can just go with a flow ... and hope ... and pray.
I did however put my husband on more restrictive diet and bunch of supplements and his PSA went down for abut more than 2 points. We test PSA every 6 weeks (on our expense) just to calm my nerves lol. He also had TRUS couple of weeks back (ultrasound examination) which confirmed that all is still contained in a prostate (knock the wood) *sigh. We are also being taken care of at center of excellence and I have to somehow learn to trust experts even though we ARE in this situation because our original urologist was a moron and did not follow correct AS protocol.
All in all, I wish your husband and you very successful treatment (whichever one you choose) and complete and forever eradication of a cancer : ). Your husband has more favorable findings than mine and you have many options for treatment and it is good to hear everybody out . My husband also wanted surgery and thought that consultations are just waste of time, but doctors insisted, so we had them. I must say that talking to RO was very useful in a sense that it confirmed our choice of having surgery even further. We however canceled focal therapy consultation since it really had no appeal for us since my husband has 4+3 and cribriform cells and probable IDC formations ( I say "probable" since one lab said they are there and the other that they are "probable" ). Those are aggressive features that were present in one single core of 16, BUT we have no desire to play with that.

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Profile picture for surftohealth88 @surftohealth88

I completely understand you and the situation with us is very similar : (.
My husband is pretty calm and patient and I am at my wits end.
If I did not have this forum which is abundant with such caring and extremely knowledgeable people I honestly don't know how would I have kept my sanity during all of those months. I also used this waiting period to educate myself about PC treatments and recovery. Our surgery is next month and after such a long period of waiting all of the sudden it looks "so close", that I am already in a state of panic. I am not worried about surgery per se, or side effects, I worry about a final pathology report since sometimes it does not match biopsy findings. I am not mentally ready to hear about potentially more worrying features present, but again, I will never be, so one can just go with a flow ... and hope ... and pray.
I did however put my husband on more restrictive diet and bunch of supplements and his PSA went down for abut more than 2 points. We test PSA every 6 weeks (on our expense) just to calm my nerves lol. He also had TRUS couple of weeks back (ultrasound examination) which confirmed that all is still contained in a prostate (knock the wood) *sigh. We are also being taken care of at center of excellence and I have to somehow learn to trust experts even though we ARE in this situation because our original urologist was a moron and did not follow correct AS protocol.
All in all, I wish your husband and you very successful treatment (whichever one you choose) and complete and forever eradication of a cancer : ). Your husband has more favorable findings than mine and you have many options for treatment and it is good to hear everybody out . My husband also wanted surgery and thought that consultations are just waste of time, but doctors insisted, so we had them. I must say that talking to RO was very useful in a sense that it confirmed our choice of having surgery even further. We however canceled focal therapy consultation since it really had no appeal for us since my husband has 4+3 and cribriform cells and probable IDC formations ( I say "probable" since one lab said they are there and the other that they are "probable" ). Those are aggressive features that were present in one single core of 16, BUT we have no desire to play with that.

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Thanks so much for replying in detail! I totally understand your plight. Even though our surgery may not be until October or November, I too am living the same nightmare regarding post surgery pathology reports. Each time that happens I tell myself to pray instead of agonising about something that may not be. Its been 3 months since the biopsy and while we wait another 3 to 4 months, i am looking into going for some kind of ADT. Problem is i read that ADT may cause kidney damage and my husband has renal disease stage I. I am now looking into estradiol. Glad your wait is almost over. Hopefully all the fear and stress will be gone soon. Wishing you and your Husband all the very best!

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