We confirmed the biopsy at Brigham and Women’s on 4/16 at 11am. I called to see if I could get the CT, X-Ray and blood work results. They told me that after the biopsy and when the pathology is completed, the team of doctors working on my case will meet. They will go over ALL the information to decide the next steps. We will then get to meet with the team of doctors to talk about where we are headed. I was frustrated not being able to get answers but after researching the process, it makes sense.
So the timeline is: Biopsy 4/16 and meeting with the team of doctors to get results 4/24 or week of 4/27 depending on when pathology is ready. Ideally it is benign, we take it out and end of story.
Kathy and I have been doing allot of surfing to find information on Sarcoma. In doing that research we found that since Sarcoma is a very rare cancer (less than 1% of all cancers) it is cared for very differently than other cancers. One common theme is to make sure you are seeing a doctor or hospital that is well versed in treating Sarcoma. We could not be at a better place than Dana Farber. Hospitals from all over the world send samples and reach out for help from the folks at Dana Farber. No doubt in our minds we are in the right place.
We found this website that has a wealth of really good information. The link is listed below.
If you want to follow the blog and get an email when things have been added, click on “Follow” on the very bottom right of the page, then enter your email It is not easy to find unless you are looking for it. I will only be updating when I feel there is something relevant to post.
A big thanks to my best friend who also happens to be my wife for being my rock. I can not measure how important having Kathy by my side is to my everyday life, especially now.
CT scan is done should get some feedback in a day or two. Feeling good that there was nothing for them to see in the scan. Again, have to wait for results.
Biopsy is scheduled for 4-16 in the morning. I was hoping for it to be a little sooner but the team working on my case (and many others) has a meeting on 4-14 to talk about my case to make sure everyone is on the same page.
It was another good trip to the Longwood medical (Brigham & Women’s on this trip) in regards to the people and how professional and caring they are.
April 8th 2015
Kathy and I made the trip to Dana Farber to meet with Dr Marco Ferrone who is a specialist in Sarcoma tumors. From the second we arrived there, and neither of us had been there before, the people were so welcoming and helpful. There is a sadness that you feel seeing so many people clearly suffering from cancer but that is trumped by the warmth and compassion shown by all the employees and volunteers that work at the Dana Farber. They are very busy and have so many patients but yet there is such a flow to what they do and they are so well organized it was impressive. Truly an amazing place and we are blessed to have it located so close to us.
The visit including getting x-rays and blood work along with our visit with Dr Ferrone. Dr Ferrone was very helpful in explaining the path we will be taking. He was clear that there is some type of tumor in my thigh but until we get a biopsy, we don’t know exactly what it is. We are taking the tact of treating it like a Sarcoma until we know otherwise.
We have a CT torso scan scheduled at Brigham and Women’s (next door to the Dana Farber) at 4:30 today. The CT scan will show if I have any other “spots” as the doctor called them. I feel pretty confident that the scan will not show anymore “spots” and then we move on to getting a biopsy of the tumor in my thigh.
Video Posted on Updated on
This is a very good video from the Dana Farber Cancer Institute that gives you a really good overview what a Sarcoma is all about.
Welcome to my blog. I have never done this before but it seems like the right thing to communicate with friends and co-workers as I work thru this journey with what may be a cancerous Sarcoma tumor in my thigh. I will be posting on this blog as I go thru the testing and treatments to get myself back to 100% health. I don’t want to burden people with my troubles but I know people care and therefore, I created this blog for them to follow along and even comment if they want. The user name is a combination of my home town, Los Alamos, my first initial and last name, latwallis
So, how did I get to where I am today in the journey? It all started pretty innocently with a slight twinge in my left quad. I noticed it off and on for a couple of months and passed it off as nothing to worry about. On March 21st, I got out of the shower and noticed a slight bump under the skin on the front of my upper left thigh. I was able move it back and forth a little but it was not painful. It was however, a bit unsettling.
I met with my doctor on March 23rd and he wanted to get an Ultrasound. He was not overly concerned and felt it was probably Lipoma. Lipoma is a fatty mass that is not uncommon in people and animals. Our dog has some small deposits (lipoma) on her chest that we had checked out with our vet last year so I was familiar with the term.
Ultrasound on March 30th was inconclusive so an MRI was the next step. The MRI was done on April 1st (no joke here) at the Elliot in Londonderry. I was able to look at the pictures and you could clearly see something there. It was about 3 inches long and 1.5 inches wide. It was located in my upper left quad and when I put my hand in my pocket, my hand sits right on top of it. The tech was not sure what it was (and would not have said anything if he knew what it was) but that was the point in time when I started to be a bit concerned.
On Friday April 3rd I got a call from my doctors office at 7AM asking me to come in at noon. I arrived at my doctors at 12PM. The second I saw his face I knew it was not good news. The MRI revealed that there was a tumor in my thigh and the radiologist felt it was a Sarcoma. The Journey begins…..