Where to get treatment - Dana Farber or MGH?

Anonymous

Where to get treatment - Dana Farber or MGH?

SarahNH

I am recently diagnosed, ER-/PR-/HER2+, multicentric with largest tumor 3 cm, several lymph nodes involved. I live in a rural area, and had second opinions at Dana Farber (oncologist Sara Tolaney) and Massachusetts General Hospital (oncologist Steven Isakoff). The holidays delayed things. I will start TCHP chemo this week, just need to decide where...

Please, if any has experience at either hospital, or with either physician, I would love any information you can provide. I know I am lucky to have two seemingly excellent hospitals and physicians to choose from - maybe that is what makes the decision so tough!

PS: PM's are definitely welcome as well, if you'd prefer to talk confidentially.

sunshinegal

Both are great, and IMO you can't really go wrong. Do/will both recommend the (exact) same treatment? Do you know if you would see the MO at each appointment (versus an NP or a trainee)?

For what it's worth I am being treated at Dana Farber and I've been surprised at how often I am seeing an NP instead of my oncologist. (2 appts each so far)

SarahNH

Thanks sunshinegal! MGH and DF both recommended the same exact course of treatment. Though actually, they can see each other's notes on their medical system, so maybe that's why ;-)

MGH oncologist said his patients generally alternate between seeing him and his helper (NP?) every other appointment. DF oncologist didn't exactly specify, but it does sound like I'd see her NP at least as much as the Dr herself. I've heard DF relies on NPs even more than MGH, so that is a downside!

I have been a little mortified at the cleanliness of DF recently (public areas, bathrooms, exam rooms) and also the condition of one of the prescriptions I picked up at their pharmacy (the pills are just sort of rotting away). But I have less experience at MGH, and it seems a bit crazy there. So who knows!

Are you having chemo or any systemic treatment at DF?

MinusTwo

Sarah - both being good facilities - I would choose by selecting the oncologist that you feel most comfortable speaking with. The one who answers your questions & doesn't rush. Maybe the one who has the most experience with HER2+

scaredme

I went through my whole experience at DF. Very happy with my Oncologist (Kabraji) and the whole team there. They have a beautiful new facility at Chestnut Hill if your oncologist works there.

reflect

I had surgery at DF/BW and they were excellent. Always took time to answer my questions.

SarahNH

Thanks for everyone's posts! The decision ended up being made for me. I kept waffling on where to go, until MGH told me they were overwhelmed with Covid, and would have to delay chemo a bit.

I am having a little remorse, because MGH ended up giving me a tour of their infusion area, which seemed really clean and organized. Also, MGH has freezers so that patients can do hand and foot cooling to hopefully minimize neuropathy and also save their fingernails. Dana Farber does not have anything like that for their patients.

But I understand they are both good places. I will try to remember to come back here and post my experience, to help anyone else who is having the same dilemma!

LillyIsHere

Sarah, I didn't have chemo but I read that some members used cold socks and gloves. I don't know how to keep them cold, probably cold packs? Maybe you can check the chemo threads.

7of9

I used cold packs for hands and feet and we hauled in dry ice and caps to save some of my hair ( Taxotere 2nd go around known to take some follicles permanently). It was a pain but my beautiful son and I were talking at bedtime 6 yrs later tonight and he runs his fingers through my hair when super sleepy. Worth it.

BTW Cleveland Clinic does same thing and rotates nurse practitioner and onc. I think it lets them spend more time with patients and my nurse took so many calls the first few years and talked me down off some pretty steep ledges! O don't think the doctors alone would be that accessible. She also gave me honest and upfront aggressive covid protection protocols along with my radiation oncologist. Wear a mask, only hangout with people who wear masks. Get vaccinated, only hang with people who are vaccinated. Knock on wood, still alive and covid free.

SarahNH

Thanks - I agree - so I hope to at least try scalp, hand, and feet cooling.

Dana Farber does have the "Paxman" cool cap system, to possibly help prevent permanent hair loss.

Unfortunately they don't have freezers for patients, so patients don't have any way to cool their cold-mitts and socks adequately. A nurse there told me they feel there is no evidence that cooling helps prevent neuropathy. That may be true, but some data suggests cooling can help prevent painful fingernail and toenail damage. I am half inclined to buy a small chest freezer, and try to sneak in and leave it there...

MinusTwo

I used frozen peas in zip lock bags for both my fingers & toes. 30 min before & 30 min after & during the 60 minutes taxotere. I had two sets and kept them in a really good cooler and switched out 1/2 way through. ANd sometimes the nurses let me put my frozen peas in the freezer of their lunch fridge.

7of9

cooler on wheels, best thing ever. I only got neuropathy in one foot during treatment. Had it on and off for two years after when I got out of bed in morning. It went away. I never lost a fingernail or toe nail either.

TectonicShift

Since this is an MGH-DF-centric discussion, I wanted to butt in to let you all know about a clinical trial at MGH that you might be interested in. It can be found here: https://clinicaltrials.gov/ct2/show/NCT03285412 It is open to early-stage people who were diagnosed ER+ and are still on an A.I., even if quite a few years out from initial DX and treatment.

It's testing ribociclib in early stage but at-high-risk patients. But first they test to see if you have circulating tumor DNA, which is a big risk factor for recurrence. IF you test positive for that, then I think it's one year on ribociclib to see if it eliminates or reduces the ctDNA and improves long-term prognosis.

Just fyi for Boston area patients.

muska

TectonicShift, thank you for the info.

Anybody here who is participating in this trial