Dianne's Update after Proton Radiation Treatment

Great news first, - just had my PET scan 6 weeks after my Proton Radiation treatment for recurrence. As of now,  I have  no measurable disease in my body.  All the cancer in the pelvic and sacrum area is gone.  I am so grateful that I was able to have the Proton Radiation treatment.  It may have saved my life.  For the first time in over a year, I do not have pain in my sacrum area and can exercise again without pain.  I feel great.

However, they did find a suspicious spot on my left lung.  It is too small, 1mm, to biospy so they are going to put me on another 2 months of maintenance chemo, 5fu, every two weeks for a two day treatment, and do another scan in two months.  They are not sure what the spot is but, the radiologist thinks that the spot has gotten a little bit bigger than on previous scans.  So, I sitll have to live with the unkown. If and when this spot gets bigger, they can do a biospy.  Dr. Eng is hoping that the 5FU will make it disappear.  After I finish the two months of chemo, they will just watch this spot every few months.  

I know it is not the best case scenario, but, I am very happy because it could have been worse.  I was very worried that the Proton Treatment didn't work.

Thank you everyone for your support.  I appreciate your encouragement.







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So happy you were able to exercise again! I have some suspicious spots on my lungs, and they have been there for quite a while. They are nothing to worry about according to my oncologist. Prayers to you
Great news, Dianne! Thanks for sharing about the proton radiation therapy, it sounds like it was a real blessing to you. How wonderful to not have pain and be able to exercise, I’m very happy for you.
Dianne - I was so happy to read your post today! And it's great that the proton radiation has worked and that you can be without pain. I do hope the side effects were minimal and not anything like your first round of treatment. As for the spot, I agree it's not optimal news, but it sounds like they are going to keep a close watch on it. And it sounds like you are in really good hands with Dr. Eng. I am thankful for that and I hope you had a nice Thanksgiving with your family.
Sending you a big hug!
What wonderful news! Pain free is the best. I have a 2mm nodule on my lung and some other spots in my kidney and liver which they say look like fat deposits and a cyst. I think there are a llot of people that have in depth PET and CT scans that discover things that would not usually show on an X-ray. Sounds positive. Enjoy yourself while moving pain free.
This is really great news! Pain free and able to exercize again, must feel amazing. I’m sure that keeping that small spot will be reassuring-better still if it just went away. Hoping for that, or at least an idea what it is. Really glad the proton radiation worked so well!
Meant to say ‘keeping an eye on that little spot’
I'm so glad that your proton radiation treatment was successful. Good for you for getting back to that exercise! As for the lung spot, I hope this does not grow in size and that it turns out to be something totally benign. Take good care and keep us posted.
Dianne...It seems like this was a long time and a lot of work and sacrifice on your part but so incredibly worth it. I hope you are able to enjoy the holidays! XOXO Jeanne
Also, are on oral 5-FU, Xeloda? I am thrilled that the proton therapy worked for you!!!
Hi Alexis, I am so sorry to hear about your recurrence. I was stage one anal cancer in 2012. Had my recurrence in 2017 to the soft tissue around sacrum and surrounding lymph nodes. My Proton Treatment target both areas.. As of now, the tumors are gone and I have alittle bit of FDG lite up in my sacrum area. They don't know if that is still alittle bit of cancer, dying cancer cells or a reaction to the radiation. They are waiting for my next PET scan in early February to see what happens. As well as the small spot on my lung. Currently, I am doing 4 rounds of 5FU. I did both Cisplatin and 5FU concurrent with the Proton Treatment. Originally, with my recurrence I had cancer in the front pelvis area as well. after 8 rounds of Cisplatin and 5FU it disappeared. Which is when they said I could do the Proton Treatment since my cancer was localized to one area. Sounds like they might be able to do Proton Therapy for your rectal tumor. So far, I am very happy with the results. Although, I had a very tough time getting my insurance to pay for it. I am here to help you in any way I can. Let me know if you need more information. My prayers are with you.
Dianne58, thank you for your reply. It gives me hope. We have decided to go see Dr. Eng as soon as we can after my SIRT procedure this week. We had an appointment with her in October, but my cat got very sick and I chose to stay with her. She miraculously recovered so we are trying to set with with Dr. Eng again. It's great that Dr. Eng was willing to do this for you. We have been told, "no more radiation, no surgery" AND "you should try more radiation" so it's confusing. Such great news about your case and it has truly given me hope!
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