Need Boston area help

[DarkEnergy]

I'm in Boston area, Dana-Farber has cancelled my appointments, because I'm not critical at the moment. But, DX PSA 1000+, with extensive metastasis, please help me with finding an Prostate cancer oncologist that can see me, please!!!

[noahware]

Can they not do video appts, and continue with some form of treatment and follow-up labs? What is/was your latest treatment?

[DarkEnergy in reply to noahware]

Telemedicine is great, now with the COVID-19 experiences, it will become mainstream.

I'm looking for alternative to Dana-Farber, they are like Costco healthcare (too big), have some recommendations of Boston area Oncologists, so no more NYC Grand Central like pass- troughs while waiting for a blood draw.

I'm doing great for a PCa patient, currently PSA <0.02 from PSA 1000+ with extensive metastasis throughout ribs, spine, pelvic and a large tumor extending from prostate to bladder.

ADT (Lupron) alone has obliviated the tumors, recent scans shows extensive tissue necrosis!

But, I'm concern, that Cancer treatments are predominately reactive, not proactive, so why stand in line with Costco like healthcare...

[Fanger1]

Hi Dark Energy,

If you want to stay on track with your Lupron injection, it may be possible to have it done at a clinic or GP office. We wife gives me my 7.5 mg at the kitchen table. Good luck finding a workaround. Stay safe, may the force be with you. 😺

[DarkEnergy in reply to Fanger1]

Yep, I hear you, they should use a local area urgent center for maintenance stuff, like Lupron shot. My Oncologist does not see me anymore, I see his PA, since my cancer is currently not progressing "AT THE MOMENT"!

[monte1111 in reply to Fanger1]

Your wife is a keeper. I can see the force is with you.

[Fanger1 in reply to monte1111]

Yes, and today's my lucky day. She's getting used to the protocol and reports feeling empathy pain while sticking it to me😺

[monte1111 in reply to Fanger1]

My wife is no longer with me, but Good Lord, she would have loved sticking it to me.

[DarkEnergy in reply to monte1111]

Have you seen my wife, I'm a very lucky boy...

[monte1111 in reply to DarkEnergy]

Yes you are! You are the luckiest boy on the face of the earth.

[DarkEnergy]

Charles,

Totally agree, many here (HealthUnlocked) knows more about PCa than a Genitourinary Oncologist, thank you very much for the info, will follow up.

Cheers,

George

[scarlino]

I use a local MO for chemo and shots, but have it directed out of MD Anderson in Houston (about 4 hours away from my home). I get a consistent protocol but save on time and expenses if I’m just getting chemo treatment.

I agree with Nakakrats.

Yes cancer is elective as we all would elect to not have it but to not see a patient in active cancer is criminal. You may have to do some traveling but I pray you will find a center that will help you. I am sorry, that must be very stressful for you.

[DarkEnergy in reply to scarlino]

Yes, I did not sign up for Cancer, but being in Boston area, you would think I'm in solid grounds. But no, I see my appointment canceled for "preferred" patients, I have to expose this!

[Magnus1964]

I am not that familiar with Boston but with the COVID-19 virus hospitals and medical centers that have inpatient care are being very careful about treating outpatients. Look for a Urology group that practices in a clinical setting.

[DarkEnergy in reply to Magnus1964]

No, Urology group only have one PCa treatment, Radical prostatectomy (RP), this is not the only way.

[Magnus1964 in reply to DarkEnergy]

I am speaking about doctors who can treat you with drugs, radiation etc. Treatments that do not require going to a hospital over night.

[DarkEnergy in reply to Magnus1964]

Got it, all the best sir!

[scpu]

My husband has been seeing Dr Richard Lee at MGH for 3+ years. No appointments have been cancelled and he has been very responsive by email. He is wonderful. Give him a try.

[DarkEnergy in reply to scpu]

Thank you very much, it seems like Dana-Farber has become Costco like for cancer treatment services.

A warehouse approach, instead of individual attention...

[scpu in reply to DarkEnergy]

I am sure that is very scary. I hope you find a better alternative.

[Hotrod65]

Try my MO at Tufts Cancer Center ,Boston..Dr.Paul Mathew MD , Geniturinary Oncologist Specializing in PC, and Director of molecular Oncology Research Labs..don't know if he is taking patients?, I would not be here today if not for him pushing the envelope with Genomics sequencing and Immunotheraphy.

[DarkEnergy in reply to Hotrod65]

Yeah, I've heard a lot about him, hope he's open for new patients, will be awesome!

[arizonablue]

I see Dr Taplin at Dana Farber and she has me on a treatment holiday from ADT, for the first time she allowed me to get my 3 months labs done here in New Hampshire. She then called me at home to discuss results and as I am still undetectable she made the follow up appointment for July when it may be possible for me to see her personally. She saw no need for me to travel to Boston while still undetectable. I have never ever thought of my care there as being like healthcare at Costco, always felt my case was handled there with utmost respect. Now 14 years into this and ADT is still thankfully working for me.

[DarkEnergy in reply to arizonablue]

Interesting, I did consider her at first, but thought too famous, most likely in high demand, go figure...

[Rfs1975]

You might want to try the Lahey clinic in Burlington, there are a number of qualified MO there

[DarkEnergy in reply to Rfs1975]

Started out at Lahey Cancer Institute, but my oncologist was too generic, seemed like I was teaching them about PCa...

[DarkEnergy in reply to Rfs1975]

By the way, I see Dr David, at Burlington Lahey Hospital for skull scans, he's an amazing neurosurgeon. I get brain scans every 6 months for suspicious (possible) PCa creeping into the brain area

[Cheerr in reply to DarkEnergy]

Hi Dark Energy,

You’re definitely way ahead. I like your approach to your treatment and test plans. Since PSMA PET scans are not very sensitive to brain mets , I’m assuming that’s why you get these separately. And this was your own decision to do so?

[Max225]

I am very pleased with my medical oncologist at MGH. Straight shooter, no cancellations, responsive to inquiries. He can see you in Boston or Waltham:

massgeneral.org/doctors/173...

If you are also looking for a radiation oncologist, check out:

massgeneral.org/doctors/177...

Good luck.

[DarkEnergy in reply to Max225]

Thank you very much Sir, will look into it, need a new doc, that can see me as a person...

[paige20180]

Johns Hopkins has not cancelled or slowed treatments. We had the same thing happen to us. We were at a different hospital but they stopped treating.

Dr Antonarakis and Dr Tran have been great. They have assured me over and over they will not stop treating men like you and my husband. I had some anxiety over the delays in treatment having to start over at a different hospital. It’s a terrible feeling and my heart goes out to you. I know Baltimore may be far but seeing you are at DF, Hopkins May be worth the drive. Best wishes to you.

[monte1111]

Seems like you got a lot of ideas here. I know you have the urge, but be careful what you expose! Does Dana-Farber have great hot dogs? Some insurance companies will bill you for home injections. That's why I shoot up in the hospital lobby.

[DarkEnergy in reply to monte1111]

Not a hot dog fan, but Dana-Farber has a nice cafeteria, great breakfast menu!

[DarkEnergy]

Hola, Queens compadre,

I hear you, I'm perplexed that my MO has me seeing his Physician Assistant (PA), anyway, sent him an email saying goodbye and did not appreciate being deemed not worthy for personal attention.

I will be interviewing for next doc, got some referrals here, looking forward...

[jdm3 in reply to DarkEnergy]

I missed this - a month ago. My MO at DFCI said the same thing. Appt with him once a year, unless something changes drastically otherwise his PA in between. I would prefer to see him, but took it as a good sign that he did not think I required his attention as much as other guys.

Please let me know who you end up with.

Stay well.

[DarkEnergy in reply to jdm3]

Don't ever let this happen again!

LOL, just having fun brother, so this is crap, MO's have no idea what's the cancer is up to, they just react and pull out the "Insurance revenue card".

My opinion, when only diagnosed as "Advanced Prostate Cancer Metastatic Disease", and ADT+ is working, don't call me, here's my PA's number. Actually, in my opinion, Nurse Practitioners are so much better...

Oh, but when "PCa Castrate Resistance", yeah, the "Insurance revenue card" looks sweet, let's get you in ASAP!

Such as life...

[Brackenridge]

Your relationship with your doctor is quite amazing. In my experience those relationships are far and few between. With my Dad’s MO it is a struggle - I bring a list of questions and research queries and she has shot back several times “And what is it you do for a living?” I wish I had thought to say off the bat “personal injury attorney specializing in the medical field.”!