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Synovial Sarcoma - Online Support Group

Dana farber cancer center


#1

if any one has any info on this cancer center and the treatments offered please let me know. I will be taking my daughter there for a 2nd opinion. we need help that we cant get in virginia


#2

My son received treatment at age 20 through the Sarcoma Center, a partnership of Dana Farber and Brigham & Women's Hospital. He is doing fine now, three years later. He had sarcoma in his arm which was treated by a surgeon, Dr. John Ready, and radiation, no chemo. When it was time to make a chemo decision, the Sarcoma Center team advised against it, on balancing the risks of chemo (infertility, heart issues, nausea, everything else) and the uncertain benefits of chemo in my son's type of sarcoma. I told the team that I was going to seek a second opinion (in our case, at Mass General Hospital, another local well-respected cancer facility). The Sarcoma Center people said, "Fine, but we can tell you right now that they will disagree with us. Mass General ALWAYS advises chemo for liability purposes, so they can say that they've done everything that can be done." I appreciated their telling me that, and it came down to our family's just trusting the Sarcoma Center team.One more thing -- because my son was sort of on the cusp between being a child and an adult, I asked the Sarcom Center team to consult with a pediatric oncologist I had heard about (since retired) at Dana Farber, and they did so.

Since my son's surgery he's been seeing Dr. James Butrynski at the Dana Farber/Brigham Sarcoma Center. I love him. My son likes him, too. He is very practical and non-judgmental (for a time, my son took up smoking! young adults are idiots, what can I say?), and treats my son like a person, not a patient -- takes the time to talk to him about his interests, for instance. After surgery, my son was first getting quarterly scans, then every 6 months, and now he has "graduated" to annual scans. At each office visit, Dr. B goes over the scans with us and invites questions.

The Sarcoma center has a web site that I think is pretty thorough. The staff there have all been wonderful to our family. I should tell you that our very first visit to the surgeon, pre-biopsy, involved a FOUR HOUR wait for our appointment, and people in the waiting room said that was not unusual. However, I've never had to wait that long since then. But for your first visit, depending who you're going to see, you might be waiting there for quite a while. The staff also includes Physicians' Assistants, who are also very knowledgeable. Dana Farber is a teaching hospital, so you may also be seen by a med student/resident, but always with a seasoned professional oncologist/surgeon.

Let me know if you have any specific questions about Dana Farber or Boston. Good luck.


#3

thanks so much for sharing with me what you son has gone through. I will be bringing my daughter Harley to boston this Thursday for the first visit. I hope I don't regret it. we are from Richmond va and I hope they can help her. she has been seeing doctors at uva and they attempted to take her left lung out but it wasn't a success. I really appreciate the info you shared with me. do you know of any nice hotels to stay at that are reasonably priced while staying there?

btw my name is natalie

Joy Elbaum said:

My son received treatment at age 20 through the Sarcoma Center, a partnership of Dana Farber and Brigham & Women's Hospital. He is doing fine now, three years later. He had sarcoma in his arm which was treated by a surgeon, Dr. John Ready, and radiation, no chemo. When it was time to make a chemo decision, the Sarcoma Center team advised against it, on balancing the risks of chemo (infertility, heart issues, nausea, everything else) and the uncertain benefits of chemo in my son's type of sarcoma. I told the team that I was going to seek a second opinion (in our case, at Mass General Hospital, another local well-respected cancer facility). The Sarcoma Center people said, "Fine, but we can tell you right now that they will disagree with us. Mass General ALWAYS advises chemo for liability purposes, so they can say that they've done everything that can be done." I appreciated their telling me that, and it came down to our family's just trusting the Sarcoma Center team.One more thing -- because my son was sort of on the cusp between being a child and an adult, I asked the Sarcom Center team to consult with a pediatric oncologist I had heard about (since retired) at Dana Farber, and they did so.

Since my son's surgery he's been seeing Dr. James Butrynski at the Dana Farber/Brigham Sarcoma Center. I love him. My son likes him, too. He is very practical and non-judgmental (for a time, my son took up smoking! young adults are idiots, what can I say?), and treats my son like a person, not a patient -- takes the time to talk to him about his interests, for instance. After surgery, my son was first getting quarterly scans, then every 6 months, and now he has "graduated" to annual scans. At each office visit, Dr. B goes over the scans with us and invites questions.

The Sarcoma center has a web site that I think is pretty thorough. The staff there have all been wonderful to our family. I should tell you that our very first visit to the surgeon, pre-biopsy, involved a FOUR HOUR wait for our appointment, and people in the waiting room said that was not unusual. However, I've never had to wait that long since then. But for your first visit, depending who you're going to see, you might be waiting there for quite a while. The staff also includes Physicians' Assistants, who are also very knowledgeable. Dana Farber is a teaching hospital, so you may also be seen by a med student/resident, but always with a seasoned professional oncologist/surgeon.

Let me know if you have any specific questions about Dana Farber or Boston. Good luck.


#4

I am having treatment at the Dana Farber and Brigham’s Hospital now. My Doctor is also Dr. John Ready. My sarcoma was in my calf,had 2 surgeries and 5 weeks of radiation. Could not have had better care by everyone involved,so lucky to live near these great hospitals.
I will meet with Dana Farber oncologist and Dr. Ready next week to discuss chemo.
You will be treated the best and with the most knowledgable Doctors in the world…
I have had only the best treatment at both facilities always punctual.


#5

Hi Natalie,

I don't know about prices, but you should start your search by calling Dana Farber's concierge, all the Concierge 617-■■■■■■■■ -- they probably know best. If you want to start calling around, you might try the Howard Johnson's Hotel, which is a short cab ride away from DFCI , Reservations (617) ■■■■■■■■, or ■■■■■■■■■■■■■■■■■■■■■■■■■■■■. There's also a Best Western, http://book.bestwestern.com/bestwestern/selectRoom.do (617/566-6260) that looks like it has some availability, in trhe $200 range if you have a AAA or some other discount. I've heard about Longwood Guest Suites (407) ■■■■■■■■, and I think they provide free rides to the hospital (very close), but they don't have a website.

You could try a B&B in Brookline which is a neighborhood very close to the hospital area. You can find some by using the Forums at Tripadvisor.com. Samuel Sewall Inn has a room available but only on Thursday night, and it's less than $200 http://www.samuelsewallinn.com/. But again, I think your best bet is to call the concierge. Please let me/ us know if you find a place, and how things are going for you and Harley.

heartbroken said:

thanks so much for sharing with me what you son has gone through. I will be bringing my daughter Harley to boston this Thursday for the first visit. I hope I don't regret it. we are from Richmond va and I hope they can help her. she has been seeing doctors at uva and they attempted to take her left lung out but it wasn't a success. I really appreciate the info you shared with me. do you know of any nice hotels to stay at that are reasonably priced while staying there?

btw my name is natalie

Joy Elbaum said:

My son received treatment at age 20 through the Sarcoma Center, a partnership of Dana Farber and Brigham & Women's Hospital. He is doing fine now, three years later. He had sarcoma in his arm which was treated by a surgeon, Dr. John Ready, and radiation, no chemo. When it was time to make a chemo decision, the Sarcoma Center team advised against it, on balancing the risks of chemo (infertility, heart issues, nausea, everything else) and the uncertain benefits of chemo in my son's type of sarcoma. I told the team that I was going to seek a second opinion (in our case, at Mass General Hospital, another local well-respected cancer facility). The Sarcoma Center people said, "Fine, but we can tell you right now that they will disagree with us. Mass General ALWAYS advises chemo for liability purposes, so they can say that they've done everything that can be done." I appreciated their telling me that, and it came down to our family's just trusting the Sarcoma Center team.One more thing -- because my son was sort of on the cusp between being a child and an adult, I asked the Sarcom Center team to consult with a pediatric oncologist I had heard about (since retired) at Dana Farber, and they did so.

Since my son's surgery he's been seeing Dr. James Butrynski at the Dana Farber/Brigham Sarcoma Center. I love him. My son likes him, too. He is very practical and non-judgmental (for a time, my son took up smoking! young adults are idiots, what can I say?), and treats my son like a person, not a patient -- takes the time to talk to him about his interests, for instance. After surgery, my son was first getting quarterly scans, then every 6 months, and now he has "graduated" to annual scans. At each office visit, Dr. B goes over the scans with us and invites questions.

The Sarcoma center has a web site that I think is pretty thorough. The staff there have all been wonderful to our family. I should tell you that our very first visit to the surgeon, pre-biopsy, involved a FOUR HOUR wait for our appointment, and people in the waiting room said that was not unusual. However, I've never had to wait that long since then. But for your first visit, depending who you're going to see, you might be waiting there for quite a while. The staff also includes Physicians' Assistants, who are also very knowledgeable. Dana Farber is a teaching hospital, so you may also be seen by a med student/resident, but always with a seasoned professional oncologist/surgeon.

Let me know if you have any specific questions about Dana Farber or Boston. Good luck.


#6

Natalie,
I also believe that the Dana or the Brigham can help you with hotels,everything in Boston will be expensive. Look outside of city. Good Luck, if I can help let me know. I live 1 hour out of city, be ready for huge traffic getting there. Leave yourself lots of time. Try not to be stressed you are in the best of hands.


#7

Hello again, Natalie,

I also found this place, Farrington Inn, that has rooms available for just Thursday night, and less than $100 http://www.farringtoninn.com/ - I don't know anything about it, but it seems like the kind of place even the hospital might not know about.


#8

thanks joy I really appreciate the information that will be great help to me. have a great evening


#9


#10

thanks we flying out In the morning headed there.

Grammyps3 said:

Natalie,
I also believe that the Dana or the Brigham can help you with hotels,everything in Boston will be expensive. Look outside of city. Good Luck, if I can help let me know. I live 1 hour out of city, be ready for huge traffic getting there. Leave yourself lots of time. Try not to be stressed you are in the best of hands.