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Sloan Kettering Second Opinion

Jeen's picture
Jeen
Posts: 24
Joined: Mar 2012

Yesterday I went to my second opinion, Dr. Carol Portlock, a lymphoma specialist, at Sloan Kettering.

My husband and I didn't expect that she would do anything too different from my local oncologist at Yale, but in anticipation of the appointment, I postponed the starting of rituxin and prednisone which my Yale oncologist had scheduled for last Friday for the follicular lymphoma stage IV grade 1 that she diagnosed me with.

After two hours of waiting at Sloan (which was pleasant because we met a patient volunteer who worked in her office, and had been diagnosed with fnhl 13 years earlier who shared her story) we finally met with the fellow and Dr. Portlock.

As we braced ourselves for what additional chemo I would have to endure, with the chemo I am on currently for my eye cancer, Dr. Portlock told us, "she was not convinced that the evidence of a 3% small monoclonal B population in my bone marrow was a "true" lymphoma in the absence of any other evidence like a positive PET scan, or tumors, or a positive blood component. She said Rituxin and prednisone would not be her first choice to restore my only symptoms, low platelets either, and that I should find a hematologist.

She then told us that there are sometimes findings of B cell populations that have no clinical significance, and some findings that become "true" lymphoma in time....

So this latest world wind of dueling doctords has taught me two things again....I am my best advocate, and one should always get a second or even a third opinion when necessary.

The great news for me is that God has granted me a window of possibility that three cancers maybe my limit. Today I am celebrating that possibility!
__________________
10/12 DX fnhl stage IV changed to small monoclonal B cell population of unknown significance W/W; 6/2012 DX rare conjunctival melanoma in situ, surgery, interferon A eye drops daily x 4 to 11/2012; 2/2012 DX dermafibrosarcoma protuberans, (DFSP) surgery, NED; 4/2007 DX breast cancer-bilateral mastectomy, NED; cystic fibrosis-management

yesyes2
Posts: 462
Joined: Jul 2009

Hi Jeen'

Wow what a story. All I can say is yes, you are so right. We all have to be our own best advocate. So glad you did a third opinion. Were your other doctors oncs or onc/hemotologists?

I'm glad your plate isn't any fuller than it already is. It's always nice to catch a break.

Blessings,
Leslie

Jeen's picture
Jeen
Posts: 24
Joined: Mar 2012

My Yale doctor is an oncologist and hematologist, so she is no slouch---but I think in this world of specialty practices, an oncologist sees cancer in all their patients, and a lymphoma specialist sees only lymphoma. So in this instance, the lymphoma specialist at Sloan carries more weight in my eyes.

My oncologist never entertained the possibility that the few aberrant cells found in my bone marrow could have been a consequence of the other medical issues I have. Dr. Portlock explained to my husband that if he was bitten by a bug, and we knew he was bitten by a bug because we saw the bug bite him, and we then took a biopsy of that area, the pathology report could return with a diagnosis of lymphoma based on the bodies reaction to the bug bite, if the pathologist didn't know about the bite. So what I now understand is that context matters in lymphoma, and for that matter in life.

So for now, I am going to revel in the good news, because it has been so long since I have heard any!!!!!

jimwins's picture
jimwins
Posts: 2085
Joined: Aug 2011

That is good news, Jeen.
I'm so glad - you definitely have had enough to deal with.

Jim

Jeen's picture
Jeen
Posts: 24
Joined: Mar 2012

Well I was reveling for one whole day in the possibility that my bone marrow biopsy wasn't cancer when my local oncologist called and said she doesn't agree with the Sloan Kettering doctor, and that I do have cancer .....

I am pulling my hair out of my head (and my hair is very short hehe) listening to these doctors.....and am considering a tie breaker at yet a third doctor.

My heart tells me to go with the Sloan Kettering...but my heart also wants to choose the doc who says I don't have another cancer....

URGH!

cathyp's picture
cathyp
Posts: 366
Joined: Dec 2009

Hang in there Jeen. I saw a doctor at Fox Chase when I needed a third opinion after my local onc and Sloan Kettering. Nothing is ever easy in this "game" or black and white. Good Luck. Cathy

Jeen's picture
Jeen
Posts: 24
Joined: Mar 2012

I know , but sometimes easy would be nice!

I am looking at going to see Leonard , at Weill Cornell in NY. Thanks for the positive support! I will let you know how it goes.

miss maggie
Posts: 929
Joined: Mar 2010

Dear Jeen,

I read and re-read your post. I have come to the conclusion, as you have, this is not easy.

I was first dx in Oct 2009 with NHL, stage 1, low grade, marginal B cell. No bone marrow involvement. I was treated with Rituxan, once weekly for 4 weeks. I have been in remission for 2 years. Upon dx there was a seminar in NYC that I attended. Dr Leonard was the speaker. I was very impressed with what he had to say. I also met some of his patients that spoke very hightly of him. I am very satisfied with the care I am getting from my current oncologist. I have always said, if things go south for me, I will get a second opinion from Dr. Leonard. Weill Cornell and Columbia Pres. are excellent hospitals. They too have an excellent marks for cancer care.

Please keep us posted on Dr. Leonard's dx. Good luck Maggie

onlytoday's picture
onlytoday
Posts: 596
Joined: Jun 2010

Hi Jeen,

When I was originally dx in May of 2010 I had 2 differing opinions on my treatment plan. I had my original oncologist's opinion and went for a second opinion and wouldn't you know it they didn't agree. So... I went for a third. The third opinion doctor agreed with the original tx plan and so I went with that. I still ALWAYS get a second opinion when there is any change in my treatment plan. I trust my primary oncologist but she is only human and welcomes the second opinion and has talked with that doc on several occasions. If she didn't welcome it I would run from her practice!

Best of luck! We need to be our own advocates for our health and treatments. I think you are doing the right thing.

Hugs,
Donna

Jeen's picture
Jeen
Posts: 24
Joined: Mar 2012

Thank you all for sharing your stories and support. I am going to try again to reach Dr. Leonard in NY. Hurricane SANDY has made it a bit difficult for all of us on the east coast, but hopefully they will be up and running tomorrow.

Happy Halloween

Jeen's picture
Jeen
Posts: 24
Joined: Mar 2012

Hello

I hope everyone had a great thanksgiving, and found something to be thankful for as I did.
I wanted to update this post, as I went to get a third opinion about the DX of fnhl because of the B cell population in my BMB, and the drop in platelet numbers.
The third opinion doc, agreed with Carol Portlock at Sloan Kettering, and said that the BMB finding of a small B cell population's significance was unknown, but was Not definitive for lymphoma at this time.
So for now, they will treat my platelets if they get very low, but will wait and watch to see what if anything transpires.
They are also looking at some of my other medicines like singular, and acid ex as a possible cause for low platelets.
I am so glad I went to several doctors, otherwise I would have been on rituximab and prednisone, which in a person with CF is not a great choice, (unless you have confirmed lymphoma that needs treating)
Thank you for all your support!
I stop chemo for my eye in two weeks, and I am praying I can finally exhale!

onlytoday's picture
onlytoday
Posts: 596
Joined: Jun 2010

Jeen,

I am so happy for you!! And you sure did the right thing, getting a third opinion! Now you can rest and just enjoy! Thanks for sharing.

Hugs,
Donna

jimwins's picture
jimwins
Posts: 2085
Joined: Aug 2011

Hi Jeen,

Thanks for your post. I'm thankful too :).
Hang in there and keep us posted.

Hugs,

Jim

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