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CT scan results.....scar tissue vs. active cancer cells...he

Ok...For those of you who don't know me, I have primary media stinal large b cell nhl. My mass was 12X7 or so when I started chemo is April. After 2 rounds of RCHOP, it was down to 8x4.5. I just had chest chest x-rays last week (to check for pneumonia) and according to the x-ray, it was between 2-3 now. (this is after 4 rounds of r chop) I was just scanned yesterday, and just spoke to my onc. and now the mass is 8x5, but he says he measured it really carefully and it's the same size it was back in May. I'm now scheduled for a PET scan on Wed. My onc. thinks that the tumor is "scarring down" and that a lot of what's left could be scar tissue and thus dead non active, but we won't know for sure until after the pet.

OK, has anyone ever heard of this happening with the more aggressive lymphomas? I'm going into the holiday weekend, and I'm scared and so upset. Why didn't the x-ray show that the mass was still that large? AHHHH......thanks for any help!

Diane
Reply:
Diane, So sorry to hear that you are upset with your CT scan. I do know that cancer does leave scar tissue, I have seen reference to that on my CT reports. The Pet shows cancer by lighting up cancer cells, that is why they usually do both. I had only a CT once in my 20 months since stage IV dx, always needed a PET also. The Pet results can be totally different then the CT. Please don't spend your holiday worrying, it could very well be scar tissue. I always say that my insides,etc. must look like a battleground after 8 R&Chop. I had my CT scan today and I don't think I'll ever get familiar with that awful stuff I have to drink,ugh. Diane, think positive, and I'll say a prayer that both our scans are fine. Worrying doesn't change anything and it is wasted energy but we all do it!! I know you will be ok. Susan
Reply:
Dear Diane, I have scarring or cell elasticity loss in my peritoneal area where the mass was. My mass started out approximately 8 x 11 cm's. One report stated even larger than that. I had three rounds of RCHOP and it decreased a third in size according to the CT scan. I had three more treatments and the CT scan showed no decrease in size. That was when I was sent for a PET scan. The PET scan showed some residual cancer cells still there, so that was when I had the Rituxan by itself. Since then I have had four more Rituxan treatments. Eight of them in all. Anyway, I still have a mass that is like 2x3 cm's, but the Rituxan is shrinking the scar tissue. Yours could very well be scar tissue or cell elasticity loss. I know you are worried to death. You have a right to be not knowing what is going on in your body. The PET scan will show if there is any abnormal cancer cells there.
All we can do is pray and believe in the best. I will certainly be doing that on this end. I will not tell you not to worry because I know you are and will. I did the same thing when in your shoes. It is your life and your future. If there is still lymphoma there, then another treatment protocol will be used. I am so sorry you are having to go thru this. I know it is not an easy journey you or I or the others on this board are taking. I know it is different because it is your body. My heart does go out to you and I will be keeping you in my thoughts and prayers until you know something. Remember, we may have to lose a battle along the way, but we are not going to lose this war. We are here with you lifting you up and supporting you all the way.Hang in there and take care of yourself. Margaret
Reply:
Diane, how difficult this must be for you right now. I am going to hope and pray for you that the CT scan only is showing scar tissue. I have seen other posts on the board where that was the case, and the PET scan showed a much more positive picture. I know it is hard or even impossible to do, but please try to enjoy the weekend with your family. I will have my PET on Monday - will pray for your PET to be much more positive result! Hang in there! Youl will have so many of us on the Board praying and rooting for you.
Reply:
Thanks so much for the replies....I feel better already just knowing you all are out there routing for me!! I read the posts to my mom with tears in my eyes, she put her hand on my shoulder and said "you've got some good friends there honey." She's right. I don't know how I'd do this without all of you, your experiences, wisdom and support.

I will enjoy my weekend with my family, and I'll take a Zanex when I need one (I'm no super woman!) Thanks again....I hope you all have a wonderful weekend!!

Diane
Reply:
Diane
I'm so sorry about what your going thru right now. I can tell you this, I know when I was sick I had alot of wonderful people praying for me. They wouldn't let me give up Hope and keep me reminded of it. They were here every inch of the way during my journey. I join everyone here praying for you and helping you thru your journey.
Diane, NEVER stop believing there's HOPE and you fight!!

Love
Sonja
Reply:
Diane,
I am so sorry that you are dealing with this extra worry right now, I do not have experience in this area, but the others do, and they all sound so hopeful. You are on my prayer list too. God, has been taking care of all of us and he isn't through taking care of you. Celebrate the 4th and enjoy your family and friends. Keep hold of your faith and hope, cause you have all our love. The PET is going to prove you are on the road to recovery. I am not going to except anything less than that. God bless you.
Tony
PS Susan, I am praying that your scan goes well, also.
Reply:
Thank you all for your concern and prayers, I'll let you know when I find out ANYTHING. Waiting is the worst part of testing, agreed? I'm doing ok,it is no doubt my nerves causing me to have symptoms. Have a good day.
Susan
Reply:
DGel, I understand your concern about the different test showing apparently different things. I have a question for you. Is your cancer an indolent cancer or fast growing type. I have indolent CLL. When I was first dx six months ago the PET scan didn't show most of my cancer locations because slow growing or indolent cancers do not uptake the glucose any faster than normal cells. So now I am confused I am done with six months of Rituxin and fludarabine and now the Dr is going to do a bone marrow test, and CAT scan and another PET scan. I don't know why another PET Scan when the first one didn't show uptake in my cancer to begin with? I wish you and all of us the best but this waiting and guessing about life and the future is a tuff one for me too!
Reply:
Hi Kit......I have an aggressive large b-cell lymphoma, so my cells light up like a flashlight on a pet scan. And, yes, the waiting game is tough. I just heard that we're going to finish out my chop and hope for the best (total remission) at the end. I'm crossing my fingers. I hope all goes well for you......Diane
Reply:
Hi Diane,

My mom has Burkitt's-Like Lymphoma which is agressive and leaves a ton of scar tissue behind. It's un-nerving, but once you get the news of "no activity" you'll feel great.

Hang in there!

Rock

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