Update on my sister grade 3 AA- 1 year out

BenLenBo said:

Connie,
My son is being
Connie,
My son is being treated by all three facilities, it is a group effort in the treatment plan. John Hopkins, Mayo and Roger Maris Cancer Center are all working together. When our son had his tumor removed, all three diagnoised, met, ran genetic molecular tests, Benjamin was scanned from one end of his body to the other, before treatment plan was determined. All information about Benjamin's treatment is shared between the three facilities and are in constant contact with each other on his status. We were told, he was being treated aggressively, because they have the best survival rates. It does break my heart to see others on this site to are unhappy with their treating facilities, or insurance doesn't cover, or treatment is totally different. I guess we were blessed to be in the right place at the right time, or the fact he is being treated by physicians who are in the top 1% of the best doctors in USA. They had a group meeting of about 30 doctors, with various training from oncology, genetics, radiology, neurology,pathology, etc, when treatment plan was being set-up. To answer your other question - go to the centers that have a good track record for treating brain tumors.
I hope this answers some of your questions - I am so sorry to read your son's battle with
cancer- it is never easy, and I've said it before, "There are no owners manuals given out when
our children are born". All we can do is love them !

Carol

I_Promise, and Cindy
I am
I_Promise, and Cindy
I am not angry at all. I appreciate the knowledge shared on this site. I never knew 100 % didn't mean all of it. I thought the infiltrating cells meant it was going to eventually come back. I always wonder if the NO is being totally honest with us in what he is seeing on my husband's results becausevhevgoes so fast. Thank you so much for all the information. Although it hurts to know, I feel it's best to know.

I too will never forget that day! I still worry every day about it coming back. I am terrified.

connsteele said:

Question for Carol (BenLenBo)
It's so heartening to hear the success stories here. Also, Carol, thanks for sharing the web addresses of reputable web sites. I will bookmark them for future reference (my husband is a long term survivor of prostate cancer). I have a question re: your son's treatment and doctors. I agree that it seems every treatment facility has their own particular approach to treating aggressive brain rumors. You memtioned three top centers. Which one does your son go to? Did you get second and third opinions from the other two? Did they ever disagree on treatment plans and diagnosis?

Sometimes I feel so guilty that we didn't go to some other centers for additional opinions. (in one sense we did, I guess. he was originally diagnosed and had his surgery and radiation at Inova Med Center in Wahington DC. In addition, the rad doc sent his tumor sample to a Dr. burgers at Hopkins and he 's the one who dx AA3 ; his surgeon said medulloblastoma. Dr B also noted that his was an unusual tumor which leads me to think they really didn't know what kind it was. We then moved him home to Ohio and he was treated at The James Cancer Center at Ohio State and Dr. Cavaliere agreed with the treatment protocol..)

I guess my bigger question is: if indeed one goes to a major cancer center, how different would it be from the other top centers in the field? And what to do if there are differing opinions? It can drive one crazy during a time when one is hanging on by a thread anyway.

Hope that these good stories continue.

Connie
Mother of David
Dx AA3, April 2011

2/28/77-4/14/12

Let go of the guilt </b>
Hi Connie,

I don’t think you should feel any guilt for not going to other centres. I think if you felt compelled to or if you didn’t feel you were being taken care of, you would have. Our strong feelings direct us.

Everyone’s story is different. My fiancé was diagnosed with Grade II Oligodendroglioma in his left parietal lobe last August. He went in for surgery immediately and was at 90% removal when he came out. A panel of doctors across Canada went over his genetic molecular tests (1p19q deletions) met and discussed his diagnosis and treatment needs. A portion of this tumour had stemmed to the other side, and due to location, it is not in an area they will ever be able to remove. After surgery we were advices to take the “wait and see” approach. There is no need for radiation if he can live the same quality of life for 5 or 10 years as is, as mentioned, the location plays huge into this. We did reach out and ask for a second opinion, only to be told the same thing (this is where we found contentment, but we were content in the wait and see prior as we have full faith in our doctors at the BC Cancer Agency)

I do not believe that anyone should feel broken hearted for reading or hearing that someone else has taken a different treatment plan or approach than another. What is suited for one is sometimes not suited for the next.

We are a year in now with no progression showing on his MRI’s. He is back at work, and unless he shaves his head, you would never have a clue that he has this. He lives, he smiles, he finds joy in everything he does. It’s often easy to forget at times the news we were hit with last year. I think when you follow your heart, when you trust your team, if your plan is not like someone else’s you’ve read on here, it creates less confusion. I remember in the beginning being so overwhelmed with the different stories, different treatments, different opinions. . . It’s nice to have the support and a place to ask questions, but you do need to find a point to draw the line and not let what you read here, effect or confuse you.

I am wishing you the best and you will be in my thoughts and prayers. There are many different success stories accomplished by many different treatment plans!