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2nd Opinion for Dad - MSK or Hopkins?

bethanyj
Posts: 2
Joined: Mar 2011

Hi all -

Am new to this board - reading the postings so far has been very helpful - thanks in advance!

My dad was just diagnosed with cancer on Monday. The oncologist at his local hospital in central PA has said stage IV. The mass in his colon was blocking digestion so he went in for colon surgery yesterday - several inches of colon were removed & the remaining ends were reconnected - we were told this surgery went as well as could be expected but the surgeon did say there was "a lot of tumor" on the liver and some on the lymph nodes around the aorta. He will be in the ICU for the next 2 nights and then transferred to a regular hospital room for the next 7-10 days to recover from the surgery. We have been told that he will not be able to start chemo until he is healed enough - which might be 3-4 weeks from now. The local oncologist has not given us a specific course of next steps yet, only to say that it will be some form of chemo.

Here is my question. We would like to get my dad a high-quality second opinion prior to beginning any local course of action. Our best options seem to be as follows:

1. Johns Hopkins in Baltimore will not schedule an appointment for him until he is released from the hospital. My concern about this is that this might create delay - for example if he is released on the 4th, they might not be able to get him in until the 24th or later (the woman on the phone said that if we had been able to book an appointment today, the earliest would be the 15th).

2. MSK in Basking Ridge will schedule an appointment for him now - they can either take him on the 13th with Dr. Shilen Patel (gastrointestinal specialist) or on the 8th with Dr. Mila Gorksy (who has a focus on women's health which is not exactly what we're looking for, but she's available sooner).

3. MSK in Manhattan - we have not called them yet since it is more difficult to get my parents into the city than it is to Basking Ridge - however we will do so if that seems to be the option to get him the best treatment.

Does anyone have any thoughts/recommendations on which of these options is our best move? We want to get him seen as soon as possible by the best person/people possible - I personally want him to have this 2nd opinion before he starts chemo with the local guy since I want to make sure he's got the best treatment - he's very eager to get started though and so we don't have a lot of time.

Should I wait for Hopkins, go with Gorsky at Basking Ridge, go with Patel at Basking Ridge, or call MSK in the city?

Many thanks!

herdizziness's picture
herdizziness
Posts: 3642
Joined: Apr 2010

I can't recommend the oncologists as I'm not from that area. But your Dad does have time to find one you'd like. It's at least 4 weeks after surgery before any Oncologist will do chemo, and quite often is 6 weeks (my case was 4 weeks).
Sorry I can't be of more help, but others here surely will be.
Best to your Dad.
Winter Marie

Lovekitties's picture
Lovekitties
Posts: 3355
Joined: Jan 2010

Glad you found us but so very sorry to hear about your dad.

You are right that a second opinion is a good thing to have.

I have no personal experience with any of the facilities you mention, so can't make a suggestion.

It is important to remember that your dad, even once released from hospital may not be up to a long ride. That may be a consideration.

I am sure others who have had experience at these facilities will chime in soon.

Best of luck with all this. Your dad is lucky to have you in his corner. Please keep coming back, there are lots of good folks here who will gladly share eveything they know and have been through.

Marie who loves kitties

Buckwirth's picture
Buckwirth
Posts: 1271
Joined: Jun 2010

I was in chemo within a week of getting DX'd, and it only took that long to get scheduled to have a port put in. Have they put a port in your dad yet? Regardless of what course you take that will probably be the next step.

So, if you stay in the three to four week timeline for healing from surgery (which is normal) you have time to seek other opinions.

Did anyone talk about removing the liver tumors or the lymph nodes? They may be too large, or in the wrong place, but it is something they should discuss with you.

Stage IV is not good news, but it is not the end of the world. There are many on this board who have been living with that diagnoses (DX) for years. It is also not unusual for the doctors to be vague at this point, be insistent! It looks like you may be the advocate for your father and you should make sure the doctors are up front on odds (they hate to give them) and side effects (they like to downplay them).

You also probably want to discuss testing for the Kras gene. If it goes the right way it adds a couple of more treatment options to the mix.

Good luck in your search!

geotina's picture
geotina
Posts: 2121
Joined: Oct 2009

Welcome to our group. While Stage IV is not good, my hubby was diagnosed Stage IV in March, 2009, mets to liver and lungs, and is going strong. Your present doctors will probably give you a treatment plan in the next few days. An oncologist will probably visit with your dad and hopefully with family present. Out of the gate, more than likely, the treatment will be the same. I found this to be true, whether we were here in Michigan or Texas or California, out of the gate, the treatment would be the same.

As far as second opinions, it never hurts. By MSK I assume you mean Memorial Sloan Kettering. I have heard they are top notch. Don't know if I would go with a doctor that focuses on women's health. You may want to start a discussion with something like "Anyone being treated at MSK", and those being treated there will hopefully see the thread and tell you their treatment history and doctor names, just a suggestion.

Several on the board receive(ed) their treatments at MSK in New York City so hopefully they will respond. Johns Hopkins also has an excellent reputation.

How old is your dad? My hubby was 60 at diagnosis and was able to handle the first line treatment (Folfox) quite well.

Take care and take it one day at a time and come back and let us know what the docs say.

Tina

bethanyj
Posts: 2
Joined: Mar 2011

Thanks for fast responses! They have put a port in (as well as a Greenfield filter since he did have a pulmonary embolism). The surgeon said the liver did not look like a good candidate for surgical treatment until the tumors were smaller. Also am not 100% sure of the staging of this thing - the oncologist said "stage IV with 5-year prognosis" on Saturday, before the colonoscopy & biopsy and before the colon surgery. Since then he has not spoken of staging.

I changed the title of the thread to reference MSK and Hopkins specifically so hopefully some people with personal experience with those facilities will come by. My dad is 63 and generally "healthy" other than this so we are hopeful.

Buckwirth's picture
Buckwirth
Posts: 1271
Joined: Jun 2010

From Cancer.org:

Stage grouping

Once a person's T, N, and M categories have been determined, usually after surgery, this information is combined in a process called stage grouping. The stage is expressed in Roman numerals from stage I (the least advanced) to stage IV (the most advanced). Some stages are subdivided with letters.

Stage 0

Tis, N0, M0: The cancer is in the earliest stage. It has not grown beyond the inner layer (mucosa) of the colon or rectum. This stage is also known as carcinoma in situ or intramucosal carcinoma.

Stage I

T1-T2, N0, M0: The cancer has grown through the muscularis mucosa into the submucosa (T1) or it may also have grown into the muscularis propria (T2). It has not spread to nearby lymph nodes or distant sites.

Stage IIA

T3, N0, M0: The cancer has grown into the outermost layers of the colon or rectum but has not gone through them (T3). It has not reached nearby organs. It has not yet spread to the nearby lymph nodes or distant sites.

Stage IIB

T4a, N0, M0: The cancer has grown through the wall of the colon or rectum but has not grown into other nearby tissues or organs (T4a). It has not yet spread to the nearby lymph nodes or distant sites.

Stage IIC

T4b, N0, M0: The cancer has grown through the wall of the colon or rectum and is attached to or has grown into other nearby tissues or organs (T4b). It has not yet spread to the nearby lymph nodes or distant sites.

Stage IIIA

One of the following applies.

T1-T2, N1, M0: The cancer has grown through the mucosa into the submucosa (T1) and it may also have grown into the muscularis propria (T2). It has spread to 1 to 3 nearby lymph nodes (N1a/N1b) or into areas of fat near the lymph nodes but not the nodes themselves (N1c). It has not spread to distant sites.

T1, N2a, M0: The cancer has grown through the mucosa into the submucosa (T1). It has spread to 4 to 6 nearby lymph nodes (N2a). It has not spread to distant sites.

Stage IIIB

One of the following applies.

T3-T4a, N1, M0: The cancer has grown into the outermost layers of the colon or rectum (T3) or through the visceral peritoneum (T4a) but has not reached nearby organs. It has spread to 1 to 3 nearby lymph nodes (N1a/N1b) or into areas of fat near the lymph nodes but not the nodes themselves (N1c). It has not spread to distant sites.

T2-T3, N2a, M0: The cancer has grown into the muscularis propria (T2) or into the outermost layers of the colon or rectum (T3). It has spread to 4 to 6 nearby lymph nodes (N2a). It has not spread to distant sites.

T1-T2, N2b, M0: The cancer has grown through the mucosa into the submucosa (T1) or it may also have grown into the muscularis propria (T2). It has spread to 7 or more nearby lymph nodes (N2b). It has not spread to distant sites.

Stage IIIC

One of the following applies.

T4a, N2a, M0: The cancer has grown through the wall of the colon or rectum (including the visceral peritoneum) but has not reached nearby organs (T4a). It has spread to 4 to 6 nearby lymph nodes (N2a). It has not spread to distant sites.

T3-T4a, N2b, M0: The cancer has grown into the outermost layers of the colon or rectum (T3) or through the visceral peritoneum (T4a) but has not reached nearby organs. It has spread to 7 or more nearby lymph nodes (N2b). It has not spread to distant sites.

T4b, N1-N2, M0: The cancer has grown through the wall of the colon or rectum and is attached to or has grown into other nearby tissues or organs (T4b). It has spread to at least one nearby lymph node or into areas of fat near the lymph nodes (N1 or N2). It has not spread to distant sites.

Stage IVA

Any T, Any N, M1a: The cancer may or may not have grown through the wall of the colon or rectum, and it may or may not have spread to nearby lymph nodes. It has spread to 1 distant organ (such as the liver or lung) or set of lymph nodes (M1a).

Stage IVB

Any T, Any N, M1b: The cancer may or may not have grown through the wall of the colon or rectum, and it may or may not have spread to nearby lymph nodes. It has spread to more than 1 distant organ (such as the liver or lung) or set of lymph nodes, or it has spread to distant parts of the peritoneum (the lining of the abdominal cavity) (M1b).

geotina's picture
geotina
Posts: 2121
Joined: Oct 2009

If your dad has spread (metastasis) to the liver then he is Stage IV. When the cancer spreads to another organ, then the staging is IV. Colorectal generally metastizes from colon to the liver and lungs. Your doc is probably right in that if the mets are large or numerous, until they shrink down, any surgical options may have to wait. Many people on the board did go on to liver resection after chemo.

Best wishes, take care and get some sleep!

Tina

NJC
Posts: 72
Joined: Nov 2010

I'd highly recommend that you head to The University of Pittsburgh's Hillman Cancer Center and see David Bartlett, Chief of Surgical Oncology, and his group. Dr. Bartlett is one of the most highly sought after Surgical Oncologist in the country, if not the world for the simple fact that he has helped pioneer some of the most advanced procedures in the treatment of cancer. He also is only one of a handful of experts in the world that have the technical knowledge and expertise for performing such procedures as Isolated Liver Perfusion and HIPEC- which he helped re-pioneer. He has worked at MSK, PENN and NIH prior to taking the Chief's job at Hillman.

Depending on where the mets are along your Dad's aorta, he may be eligible for the HIPEC procedure. At which point MSK will refer you to Dr. Bartlett.

As far as Hopkins is concerned, Dr. Zeh, an associate of Dr. Bartlett's, passed on the Chief of Surgical Oncology position at Hopkins to go to Hillman and work with Bartlett.

Essentially, by going to Hillman for Bartlett you get MSK and Hopkins all in one.

Best of luck to your family in what ever path you choose!

-Joe

Crow71's picture
Crow71
Posts: 681
Joined: Jan 2010

I'm glad to hear you are hopeful. I imagine you are reeling a bit from all of the information. It's hard to deal with all of the emotions of this awful dx and process tremendous amounts of info at the same time. We've all been there and we'll help you as much as we can.

I hope your dad gets out of the icu soon. They jerk you out of bed pretty quickly don't they. The more he walks, the faster he'll heal.

You are really smart to take some time to find the right place and the right onc. Definitely get your second or third opinion before starting chemo. I wouldn't worry too much about how far out the first appointment might be. Wherever you decide, you'll probably be there for a long time. A few weeks at the beginning isn't going to make much of a difference in the long run. Finding a cancer center and a good team of doctors will make a difference every day.

You dad's situation is complicated. I'm not too worried about the liver mets. It's amazing how much abuse a liver can take and come out fine. Lymph nodes around the aorta sounds more troubling, although I don't really know a great deal about that particular situation.

Honestly I don't think you can go too wrong with any of these major, university based cancer centers. I also agree with Joe about Pitt. I went to MSK for a 2nd opinion about surgery last year and they recommended Pitt. The U of Maryland also has a great team of digestive cancer oncs.

You've got to ask yourself how important convenience is to you. A standard cc treatment schedule is an infusion every two weeks. The real trick is finding an onc, a person, that you like. It's a bit of a crap shoot really. Another question for your dad is "what role does your dad see himself playing in treatment decisions?" Some folks want to be presented with options and some folks want the doctor to make the plan. Some doctors want the patient to participate and the process. Some doctors just want the patient to do what they are told.

I hope some of this is helpful. Never hesitate to ask more questions.

Welcome to the board. Stay strong and focussed.

Roger

AnneCan
Posts: 3692
Joined: Oct 2009

Welcome to the board. I can't help you with recommendations for a cancer centre; I am in Canada.

abrub's picture
abrub
Posts: 2146
Joined: Mar 2010

and I'm very pleased with them. However, Johns Hopkins is superb, too (as is Bartlett, at U. Pitt, as mentioned by someone else.)

I would make the appointment with MSK for now, and possibly an additional consult at Johns Hopkins or Pitt. Get information under your belt before taking the next step.

It's scary, but times and treatments are changing, and longevity stats are based on older treatments. Don't let the numbers scare you. (Heck, I was told I'd be dead by now by one dr, and I'm healthy as a horse - off to a kayak convention tomorrow!)

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