Medical Oncologist in Southern New En... - Advanced Prostate...

Advanced Prostate Cancer

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Medical Oncologist in Southern New England

Jimhoy profile image

In an unrelated post recently, I learned of my aPC ignorance or naivety in not having a Medical Oncologist oversee my treatment. I’m post ERT and completed my original 18mo ADT and am currently being monitored by both my Uro and RO. I don’t see surgery or radiation in my foreseeable future prompting that post ultimately questing their usefulness!!

I can use the phone book (like I did to find my Uro) but prefer reconditions from the people that know!!!

Please respond with names of MO’s that you are pleased with, and that have practices in RI or southeastern Ma.

Thank you

Jc

26 Replies

I will ask among the men in my support group and seek their input. Do you have an email you could share, since they may not be able to respond through this site?

Jimhoy profile image
Jimhoy in reply to dadzone43

Please see your chats and, thanks again!

Jc

Allow me to present a contrary POV. Unless you actually have advanced PC - ie metastases, I think an MO may get in the way. Unless you have a biochemical recurrence, your therapy may have been curative, and there is no need to involve yet another doctor. Some people think MOs know what ROs and Uros know - that is not the case. They are each expert in their own field. An MO is expert at medicines for incurable PC. An RO is expert at radiation planning and the aftermath. A Uro is expert at surgery and urological symptoms. You are the quarterback - choose the doctors you need for when you need them.

Jimhoy profile image
Jimhoy in reply to Tall_Allen

Virtually everything I know about prostate cancer I learned here at HU. I don’t make anything up or exaggerate!! So somewhere along the line, right or wrong, I was made to understand that all stage 4 was “advanced” PC. I did not have met’s detected at Dx. If that means I am not considered aPC than I apologize to those that are and misleading when seeking advice!!!

In my world, it made perfect sense that if there are two options and two different people offering the two different answers, that they my vie for my business!! You need to trust their advice and be the QB without really knowing the play!!! Thus it makes sense that there would be a referee in there somewhere!! Thought that would have been my PcP but she is no help in this area!

Thanks for your tip. I was recently told things are good and don’t need to see either for Months (Uro 9mo’s & RO 13mo’s) so I have time with this now!!

Jc

in reply to Jimhoy

Stage #4 is undeniably APC.....if it were I ,I too was #4 ,I d get tested often amd not wait 9-13 months . To me that ludicrous..

Jimhoy profile image
Jimhoy in reply to

Thanks for your concern!

I have been on 6mo intervals to date!

However my Uro (Yesterday) has refereed me for to a specialist (profession title unknown) for testosterone therapy to attempt to alieve some of my extraordinary side effects! When I requested more frequency in my testing, he told me that this is part of the T therapy. That there will be many test in my immediate future!!

Jc

Tall_Allen profile image
Tall_Allen in reply to Jimhoy

Why do you think you are stage IV? Stage IV means you have been diagnosed with metastasis (lymph node, bone or visceral).

You have to be careful about what anyone tells you (even me) on an internet website - no one here is a doctor, they may misunderstand your situation, or they may be mistaken. I have, for the most part, given up trying to correct or give alternative POVs to responses on this site - that would be a full time job!

Jimhoy profile image
Jimhoy in reply to Tall_Allen

Simple answer.... I Don’t recall at this point!!! But I will do my best to backtrack and find out!!! It is absolutely nothing I could come up with on my own!! And for many reasons, this bothers me a great deal!! Especially if I got it from the same people that told me that I don’t have mets!!!

People lie on the internet.... to hell you say!!!! This is why, as I stated, I want to be as accurate as I can with my condition, symptoms and concerns as well as when I offer comments and my experiences!!!

You, I and about 9000 other members put their best foot forward to help each other, but I agree that with in their genuine effort, there can be misunderstandings and biases. I don’t believe anyone would intentionally mislead another!! This is also why I don’t jump to conclusions fact find beyond HU and agree everyone reading this to do as well!! Beyond Google too!!!

Jc

I have prostate cancer and was terribly disappointed with the care in Southeastern Mass. so I am currently being treated at Dana Faber/Brigham and Womens Hospital with radiation therapy however from the beginning I was assigned a Medical Oncologist in conjunction my Radiation Oncologist, as part of my team. I am extremely satisfied with the care and highly recommend the staff here. I am currently staying at Astra Zeneca Hope Lodge (sponsored by American Cancer Society) as I receive intense radiation therapy on a daily basis for the next 8 wks. Most people receive treatment on a daily basis and resume daily life however due to the distance I elected to stay at the lodge vs driving into and out of Boston on a daily basis which I felt would be too taxing.

Jimhoy profile image
Jimhoy in reply to Davidr1049

Thank you and the best of luck!!

Based upon TA’s comment snd my resent Uro appointment results, going to hold on this for a bit!!!

I share your opinion if it’s about SouthCoast

Jc

Davidr1049 profile image
Davidr1049 in reply to Jimhoy

My opinion is of Southcoast Hospital Systems is that it is a horrible hospital system, that focused on the bottom line vs providing care. I worked for them, and unfortunately was forced to be treated by them, they are just as horrible to work for, and frankly the care not only I received but the care my family members received was bordering reportable.

Jimhoy profile image
Jimhoy in reply to Davidr1049

Ummmm ditto!!! My mother was a RN and worked there forever starting at the old Union / Treusdale hospital! We all “had” to be born there! She was / is so loyal to Charlton. They almost killed her with their “hospital doctors only” policy!!!!

Davidr1049 profile image
Davidr1049 in reply to Jimhoy

I too am a Registered Nurse and like your mom I was loyal to Saint Lukes when my mother-in-law was admitted to Saint Lukes maybe 6 years ago, while hospitalized my mother-in-law became confused, (per one staff member a friend, also another nurse) the staff frustrated with the confusion (not confused prior to admission) threw hear back and tied her in a chair, refused to give her the muscle spasm medicine which was ordered and then when she wanted to use the phone to call her daughter my wife who too is a nurse who worked at Saint Lukes. Because one of that staff member reported the incident to my wife who at the time worked at Saint Lukes a memo was sent out to all including my wife (oops) reminding staff not to report such incidents to the family but rather report it to their direct supervisor. We did file a formal complaint with DPH for which they were fined, furthermore when were finally allowed to view her notes, their were none for 6 hours (while she was in the PCU) certainly not standard of care). Sadly things have gotten worse at Southcoast and I nor any of my family will continue to receive any care there.

Jimhoy profile image
Jimhoy in reply to Davidr1049

Pathetic!!!!

My mom of 90yo at the time went in for dizzy and mild chest pains.

Every day, 3 new doctors all starting from scratch at every visit to her room!!

Now they want to do a cardiac cath. I say “why”. The answer, just to feel better and eliminate things!! Yes they are more common now but still a 1 in 90 complication rate (?). as I learned from my own experience! Never mind on a 90yo!!! Finally got a down to earth guy and I ask, if this is your mother, what would do?!! He said and I quote, “run”!!

She had a-fib and a pace maker w/defib option was installed and she’s (very) alive and well to date!!! Not being a medical professional, I may have missed some details but I have the gist of it!!

Anyway, going to keep fact finding about who to be responsible for my care for future use if needed.

Thanks again

Jc

Davidr1049 profile image
Davidr1049 in reply to Jimhoy

Thanks for sharing that I"ll bet we are only the tip of the ice burg, I could go on for hours of the horrors of SouthCoast its important to be vigilant of our loved ones when they are hospitalized, I am blessed with a wife who is a spectacular nurse to advocate for me while I am being treated. I pray someone will do the same for you too.

Jimhoy profile image
Jimhoy in reply to Davidr1049

Thanks

Best I can do is right here on HU!!

Friends “without” benefits!!!

Take care and good luck!!

Jc

Davidr1049 profile image
Davidr1049 in reply to Jimhoy

you too, thank you.!

How far are you from Yale New Haven? Is that a viable distance for you to travel? Their cancer center has an excellent reputation.

Jimhoy profile image
Jimhoy in reply to Murph256

Far!!! Better than 2 hours!! Thanks anyway!!

Good luck

Jc

in reply to Jimhoy

I drive 6 hours round trip tri -monthly for test to see my mo ..

Jimhoy profile image
Jimhoy in reply to

Does that come with desert living?😛

in reply to Jimhoy

I moved north but am still on the test drug from the U of A medical center in Tucson . I can handle tri-monthly drive to get my pills . Don’t have a choice ..

Hi Jimhoy,

I am in New England (north-central MA) and I receive treatment from my MO (Dr. Matthew Smith) at Massachusetts General Hospital in Boston. I was diagnosed with Advanced MPCa in June 2016 with PSA of 8.5 and a Gleason score 9. My mets were in the lymph nodes through out my pelvic and thoracic region. I currently have "no evidence of disease from my past two scans and my PSA is <.10. Very good care from the people at MGH and I can't say enough about my MO.

Good luck in your search.

Craig

Thank you!! Years ago while being treated for coronary artery disease in Fall River. I ran not walked to Providence RIH!! I went to Boston MGH for second opinions prior to bypass x4 surgery!! They are a class act!! Thanks again!!

in reply to grahaminator63

Great results..👏

Our stories are similar. Get to Dana Farber, ask for Mark Pomerantz and his team.

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