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cutaneous lymphoma /pet scan

samd
Posts: 8
Joined: Jun 2010

Done with RT and tumor is gone. Hopefully, no more to come.

I went ahead and got the pet scan done ever after CT was clean, except for

a suspicious node (non specific finding) in the mesentery. I'm glad I went ahead

and got the pet scan, it was clean with no (non specific findings) YEAH! I go back to

my oncologist for an appt next month. Hopefully, it will be yearly checkups from there.

I just wanted to let you know how helpful this site has been and how much I have

appreciated your input. I thought I would throw in the good news first. Now the bad.

I was told by the RT oncologist that since my gene study arrangement came back negative

that it may be that I have a pseudolymphoma instead of lymphoma. I believed he called it

a lymphoid hyperplasia. Hopes were high until the other day when he told me that they

still felt like this was lymphoma after they sent another sample to another lab in

Pittsburgh. I gotta get off this roller coaster. My prayers to all who are dealing with

it.

Thanks again,

Sam in Florence, KY

onlytoday's picture
onlytoday
Posts: 608
Joined: Jun 2010

HiSam,
Sorry to hear that you are on this roller coaster. I hope you get straight answers quickly!It does seem incouraging that your tests are coming back good thought.

A question: What is RT? Forgive me I'm not sure what that stands for but glad it worked for you

Best to you.

samd
Posts: 8
Joined: Jun 2010

RT is "Radiation Therapy" .

I have been blessed so far as not to have Chemo. Hopefully, I never will.

My prayers to you ONLYTODAY.

Peace and be blessed.

Sam in Florence, KY

catwink22's picture
catwink22
Posts: 281
Joined: Sep 2009

Hi Sam,
I am possibly looking at RT if my scan in Aug comes back with problems. My nodes are low intensity, but I have a spot on my hip that had high intensity so I was given Rituxan. If the Rituxan didn't work well enough I will have RT on it. Where was your tumor if you don't mind me asking and what was your experience with the RT? I have also been blessed not to have chemo YET, but I'm afraid it may only be a matter of time. If you have pseudolymphoma does that mean your treatment wasn't necessary or it was the wrong treatment? Blessings and peace to you also. Cat

samd
Posts: 8
Joined: Jun 2010

Hi Catwink22,

I was dx with primary cutaneous follicle center cell lymphoma (bcell)on my scalp. I only

did 10 days worth of radiation therapy. My hair fell out on the side of my head where the

tumor was located. They though it may have been what is called a lymphoid hyperplasia

which is a non cancerous growth that turns into cancer over time. I was halfway thru my

RT when my onc called me in to talk with me regarding the gene study. They still felt as

though it was lymphoma after a second biopsy was sent to Pittsburgh. RT is one of the

treatments for cancerous or non cancerous growths on the scalp. However, he did give me

an option to do something else, but, I being ultra conservative and not willing to take

any chances treated it as it was cancer and had them continue the RT. Later findings from

the Pittsburg site confirmed primary cutaneous follicle center cell lymphoma. Hopefully, I

never get another one. They say that 50% do not get another one. Some will have them re-

occur over time and you have to zap them again, but rarely do they become systemic. As

far as RT goes, I trying to get used to this bald head thing. My children stare at my head

a lot. Hopefully, in a few months the hair will grow back. The people at the Barrett

Cancer Center in Cincinnat were nothing short of AWESOME! The RT was quite simple and

painless. My prayers are with you and your household, by the way that is one adorable

child in the picture.

Peace and blessings,

SAm in Florence, KY

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