Staying local or heading to the bigger hospitals..

[Mackey Mouse]

I was thinking this after reading Avery's thread and thought maybe we could have a discussion about the smaller hospitals in your area vs the big ones in the city....

I will say this having Tom's chemo here where we live is an eye opener for sure. It is a small facility, it is not Mass General's brand new facility and I am not sure they are up to date with keeping it clean....that one really bothers me. I keep my eyes open while he is having chemo and believe me if I see anything that is not right....and I would know it after this long, I will speak up and have done so. I think the nurses are afraid of me.. LOLOLOLOLOL

The pluses are we drive back home 5 minutes instead of 2 to 3 hours in traffic from Boston while he is feeling the effects of the chemo.

The dr here writing the chemo is a great guy, I like his style of living with cancer rather than dying with it... overkill with chemo drugs is not the way he wants to go.. In our case, it would take a miracle to get this cancer gone from Tom's body.....but if he can live with it, keep it at bay and not be too sick, we would like that.. Have some remissions, we will take what we can get.. So like the small town oncologist, that is a plus.

The minuses... are they as up to date on what is going on in the field as a teaching hospital like MGH...I hope so and believe me I am watching all the time and reading....thanks for all of you who send me articles, believe me I discuss them with the doctors..

Pluses for Boston:
The facility at MGH is brand spanking new, people bend over backwards to make sure you are comfortable and I miss their loving faces, but this is not about me or them, this is about making Tom comfortable. He feels they had their opportunity to cure him the first time around and did not.. I know I am sad that he thinks that way, but there it is.

My girls can come and be with us during chemotherapy as they live in Boston...another plus for MGH.

I do love our oncologist at MGH.. he is head of the department and lectures all over the country....great guy.. minus is that he is very busy and sometimes is not available.. another minus is the office staff at MGH, except for two who are wonderful to us, trying to reach the doctor is absolutely hell and getting calls back another minus.

He is a little matter of fact when he delivered the blow that the cancer was back, we did not like that....in his defense, I know he was not feeling well that day. I did say to him the next visit, if you are not going to be on my cheerleading team for Tom, then we need to get another doctor.... He said I am on the team. I actually think he was a bit hurt when we brought the chemo closer to home, but we are having the scans in Boston and have an appt to see him. The two oncologists are suppose to be working together for Tom, and I am working on that to make sure they do. I know there is paper work going back and forth, but not sure if they have talked....

Anyhow...this epistle was to say there are pros and cons to going into Boston for treatment. I know that Children's helps with housing I believe, but living in the city can be expensive and being away from your support group is not always a good thing..

Right now, Tom's platelets are stable but white count is down.. so more blood work before we can start the last round of chemo before the scans... keep us in your prayers...

Hugs all around..

 

[Pea-n-Me]

I agree there are pros and cons on both sides of the coin.

As a nurse I've spent my entire professional life in Boston - 23 years now. It's always been a pain, but the commute lately has been taking me an hour and a half - I'm so tired of it. Luckily, over the years, I've been able to cut my hours down so I don't have to work as often as I used to. But the thought of working anywhere else has never crossed my mind. It's my home away from home, and I believe in the great work that we do. When I retire, it will be from there.

When I had my own bout with cancer, I went into Boston for surgery and chemo, but I had my radiation closer to home. I knew the same protocols were used and the radiation oncologist was tops anywhere. I had to go daily so I knew I didn't want to make that trek into Boston unnecessarily. Had I not been assured they would do the exact same thing as they'd do in Boston, I would have bitten the bullet and made the drive.

In your husband's case, I'm sure it's a similar situation to my radiation: they're doing the exact same thing as they'd be doing in Boston. Most of the time in cancer care, there follow very clearly written "protocols" for what chemo to give when, so theoretically if you go anywhere in the country for a recurrence of pancreatic cancer showing XYZ, they should be able to look up the protocol and give whatever's recommended. In reality, there's probably variation, but by rights, it's all written down. So if that's the case, what's the point of going all the way in there other than seeing the same doctor? As long as their working together, you have assurance they're all on the same page. You could probably just ask your local doc periodically if he's talked to Dr. Boston about it, etc...

We fully recognize how difficult it is to come to Boston and how patients feel a certain level of trust in their local docs and hospitals. We've made strides in helping people feel more comfortable and welcomed when they come in, as well as assist them with parking and accomodations. New rooms we're building all have accomodations for families right in the room with the patient, including sleep surfaces and refrigerators - part of the movement toward Patient-Family Centered Care.

Over the years I've seen people come from all over the world to receive care in Boston, sometimes waiting years for permission to leave their country and otherwise jumping through some major hoops to get there. Yet we have people right here in MA who don't want to drive a half hour to go to some of the top hospitals in the world. That always makes me (Of course, with a lengthy illness, it may be a little different than a one time surgery or shorter illness.)

Those are a few of my thoughts on the matter, short of getting into the medical and nursing care issues. I can say that we do get a lot of nurses from "the community" after they can no longer work in hospitals that are understaffed and not supportive of the work they do.

 

[Mackey Mouse]

I was talking about this today to a friend......I keep thinking that maybe we should take an apartment in the city and do his treatment there, but he wants to be in his house here...I am betwixt and between on this..

I am glad that we are having our scans in the city and I want to see our Dr in Boston once a month if I have to drag Tom over the bridge....anyhow.. thanks for listening..

 

[kathleena]

Thanks for sharing your experiences with travelling to Boston. Being from South Portland, ME - we too have the option of travelling there for treatment. When my Mom had brain cancer, I often wondered if I should have pushed on Dad more to get a 2nd opinion - maybe we would have had more time if with a doc that had treated more patients, but a cure would have been a miracle.

I respect docs here in Maine we have dealt with for various things, but they are most familiar with, and excel in, the more common procedures - like neurosurgeons here deal mostly with spinal surgery.

Thus our decision to request the referral for my DHs pituitary tumor directly to Mass Gen and the Neuroendocrine/Pituitary Tumor Center there. We had the primary care physician make the referral, never even seeing a specialist here.

Why? Because all of our research on the internet reported that pituitary surgery a more complex and intricate brain surgery and the experience of the surgeon is a hugely important decision. Dr Swearingen at MG does this surgery a few times a week, as opposed to those here in Maine, who may do them a few times a year.

When we arrived for our appt., the first question the attending had for us - why did you come all the way to MA. We were blunt and said, because of the experience, and because we want Dr Swearingen. She told us that he is a "gifted" surgeon. That he really knows the difference between tumor and pituitary tissue. That if there are 5 top pit surgeons in the world, he is the top one of those 5.

We see him on Feb 1st. Hopefully will walk away with a surgery date.

So my advice for anyone - do your homework. Understand what is complex, what is perhaps more routine. Look at your own situation of course, on what you can manage for travel and what the treatment will require. For us, it was an easy decision. Once the surgery is complete and the follow up appts are done, we will ask for a referral back to a local endocrinologist if necessary and take the rest of the care in Maine.

Once we know where we will be for the surgery - I'll be back for advice on where to stay! They say he will be about 2 days in the hospital, so I figure I will stay there the whole time, rather than go back and forth.

 

[Mackey Mouse]

Kathleena.. just an fyi to file for when you will need it. My daughter kept telling me about this place right across the street from the hospital, older B & B, actually owned by Mass Eye & Ear.. anyway, we are staying there in February for the scans.. they have little kitchenettes, like a studio, but again older...clean and nice.. Parking is made available to you at the Charles St garage for a price per day, but reasonable again for Boston...

Here is the link.. just for future reference and anyone else who may need it some day.. they could not have been nicer to me.. Locked door at night, safe, someone on the front desk all night, and right across the street from the hospital, the price is right. Charles Street has numerous restaurants, antique shops and a Starbucks.. I love Charles Street, very quaint.

http://www.johnjeffrieshouse.com

One more thought, Tom's surgery was at MGH.. no way would I have let anyone do a Whipple on him anywhere else. His surgeon, Dr David Berger, a gastro surgeon, was incredible...as I said earlier getting Tom over the bridge is sometimes a chore, but I am going to push for once a month to confer with his oncologist..

 

[escape]

Sending prayers your way.

I don't post often but I do read your posts and others as well. May it give you some comfort to know that others are thinking about you and your DH during this difficult time.

 

[Mackey Mouse]

Thank you Susie.. I do appreciate all the good thoughts that people post to me and others here..

I think we do good work keeping each bolstered up in our times of need..

Thanks again.

 

[kathleena]

Marsha - thanks for the link! I will definately look into staying there! I was hoping to find someplace that I wouldn't feel nervous walking back to in the dark, and since it's so close by, I think that it's a good choice!

 

[luvsmickeymouse]

Both of my kids were born with a cleft lip and palate. Their surgeons are at Dartmouth Hitchcock Medical Center. They are great. They have a whole cleft team there. CHAD is a great place. I do wish it was more local though. But we are almost done. My oldest son is finished with surgery. My youngest needs 2 more. I have lost count as to how many operations they have had.

 

[travellady]

I really wish my dad would have headed to a hospital in Boston when he started feeling lousy and couldn't seem to get better. He continued to go to his doctor in New Bedford, affiliated with St. Lukes, and though he was a nice man, and had been the our family's doctor for over 35 years, I didn't sense he was up on the latest medical techniques.

By the time they finally figured out he had pancreatic cancer, it was too late. Since I live in the Pacific Northwest, it was difficult to really push him towards seeing a specialist in Boston.

Certainly St. Lukes offers patients great and compassionate care. But honestly, specialists at the top of their field are in the more populous urban areas, such as Boston. They draw from a wider population base and are more familiar with the intricacies of many diseases and conditions doctor's in smaller hospitals are not exposed to.

 

[Mackey Mouse]

travellady......I just saw your reply this morning. Unfortunately, pancreatic cancer is such a bad one....I am a realist, 98% mortality rate, that it is hard to know what to do, where to go, and would it make a difference. Your Dad was comfortable with his doctor and depending what stage he was, surgery or not, he was probably getting the same care that he would have in Boston. They were probably conferring with Boston and following the same protocol. The thing with going to Boston is that they are cutting edge on these types of cancers as they see them all the time. Dana Farber, Mass General, are Harvard trained and somehow we put our faith in those doctors...

Not sure what the answer is here....I am teetering on the fence a bit. His oncologist down here is wonderful, kind, his doctor in Boston is busy and blunt, the facility down here for chemo is dated, the one in Boston, brand new...the protocol is the same.

For some reason why do I feel better in Boston? because it is newer and therefore more cutting edge, I do not know anymore.

 

[Pea-n-Me]

Marsha, could it be that you want to feel in your heart you "did all you could"? I think you can be assured you have. It's not like you haven't gone to Boston at all. You still see one of the best. I think you really have to take into account how your DH feels. If he were very gung ho to drive into Boston for everything, that would be one thing. But it seems as if he's most comfortable right where he is. That's important. With distance and traffic, it adds a huge element of stress onto someone who already isn't feeling well to beging with. It also feels more "scary" if that make sense. Care close to home seems a little less so. Don't second guess your decisions, they weren't made in haste, a lot of thought went into them, right? It's easy to rethink things, but be confident you and your DH made the decisions that were right for him.

 

[gabbysmom04]

My son Dominic was born with a bilateral cleft lip and palate. We live near Albany NY and met with two doctors near us. We also went to Boston to meet with a DR. We ended up meeting with a team in NYC where we made the 6 hour roundtrip every week for my sons cleft treatment. It was hard having to go back and forth and have someone watch our two year old everyweek and for 3 surgeries but I am glad we did it. Our cleft team is one of the leading teams in this country. And our Dr. invented the plate that our son used that is used all over the country. God bless everyone and best of luck!