I had my prostate removed several years ago & had few ablations at Mayo. My current PSA is 2.1, an increase of 1.0 from 3 months ago. What would you suggest is the next steps?
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Sorry to be long in getting back with you! My story is a bit unusual in my ENT here told me I had parotid cancer (which i did) but after surgery told me he "got it" and it was benign. So I continued to see him for about 16 more months till my symptoms got worse. It was then I realized that he had likely made an error but I didn't know what it was. So I went to a great NY hospital and had a biopsy then went to Mayo for another opinion. The NY hospital called me the morning I was to see my 1st doctor at mayo with my biopsy diagnosis of adenoid cystic cancer in my parotid -(very rare type of cancer, travels through my facial nerve rather than lymph nodes).
I was shocked to be told that I DID have cancer and my doctor didn't touch my parotid gland, let alone remove any of it – he lied.
I decided to have my surgery and radiation (my cancer doesn't respond to chemo) at the Mayo primarily due to the variety of physicians that did my surgery (needed 14 hours and 5 specialists). They expected less cancer spread than they found therefore the longer surgery – and the surgery and radiation stopped my cancer from progressing that was about to spread to my brain.
It really doesn't matter what my diagnosis is compared to anyone else's – if you have "horrible symptoms" for 1.5 years after what you think was an incorrect diagnosis, you should get at least one or two other opinions.
The Mayo is #1 in head and neck and for me – It's a BIG #1 – Without the initial care I received and the follow up care I've been given over the past EIGHT YEARS – (going to Minnesota from Kentucky tons of time) I would have left this earth a long time ago.
You asked my thought as a patient and I think you know it from reading all this…get an appointment at the Mayo ASAP
All the Best 🙂
As a nurse of fifty years ae nd a patient with various ENT problems for many years the fact that you have several consistent and troublesome symptoms tells me that you need a comprehensive exam by a team of experts in various fields. I do not go on this forum to diagnose or to share other people's diagnosis since everyone's issues might be similar but are different in many ways.
I went to Mayo in Rochester almost eight years ago after being wrongly diagnosed and treated by ENTs for years. The comprehensive assessment and treatment I received there is the reason I am still here and finally found out what my diagnoses were. Our heads are very complex 🙂 there's simply too much there for one specialist to diagnose if there hasn't been a successful outcome from initial treatments. Mayo in Rochester is the #1 ENT/Head & Neck medical center in the country and well worth the trip to get a thorough assessment, not just a 2nd opinion. I live in Kentucky and didn't hesitate to get "out of town" to get a diagnosis that I could trust. I strongly suggest you make the trip – you deserve freedom from the horrific symptoms you've suffered all this time.
Again, I am a patient and a nurse but I have no financial or other connection to the Mayo except knowing the entire system is responsible for my current healthy life. I wish you all the best.
Your symptoms are complex and could come from many medical reasons. I suggest you get a comprehensive examination by a good internist to begin with then go to any specialists he/she recommends. Your other choice is to go to a comprehensive medical center that has several specialists evaluate you together as a team to efficiently diagnose the problem by using best practices and develop a plan that is holistic. It's incredibly important that you get a complete assessment especially since you're so young. Wishing you all the best. 🙂
As a nurse and a cancer survivor I strongly advise you to see an endocrinologist first and if they refer you to other specialists do so. Your other choice is to go to a comprehensive medical center that can have several specialists evaluate you together and then act as a team to diagnose the problem by using best practices and develop a plan that is holistic. Your symptoms are varied and need a thorough assessment. Good luck!