Mom's Hodgkins..

CindyJF

Hello,

I hope someone can shed some light on this, my Mom is 69 and has just completed 6 months plus and extra 4 shots of AVBD Chemo. She had her final cat scan done and her results were almost the same as the ones she had at the 6 month scan, she told me the Doc says she still had a "few spots in there". I was just wondering if these spots could be just scar tissue or be begnine? She has been a real trooper and her Doc says she is doing well, her blood work is getting better and better. Doc said it could be scar tissue?

What is a normal outcome for Stage 111 hodgkins, it is common to have some kind of scar tissue left behind from the tumors? Is this normal? I have been looking around and can't find anything about the after effects? She had a 5+cm tumor on her spleen as well as a few others in the chest area that were around 3cm.

Example: She had a 5+cm node that is now just over 1cm and holding. After the further 4 shots of chemo it did not seem to decrase any further. Could it be that it is just a scar? Her midway Chemo at 3 months showed a dramatic shrinkage of her tumors of over half gone, plus her enlarged nodes were decreased! We were very excited when this happened, but now don't know what to think. Doc doesn't seem too concerned about it. But of course she has to be monitored in 3 more months, and so on...

Can anyone shed some light for me on what a "normal" outcome is? Will there be some kind of residual left behind?

Thanks,

Cindy

AlloMan

These are questions best left to a doctor, in my opinion. It may or may not be scar tissue. Most of the damage done to tumors is done at the start of chemo and its effectiveness wears off over time. A PET scan might be a good way to determine if your mother still has active tumors.

kavnan

Cindy, No one can say for sure but your Mom's doctor what those spots are, but I can tell you from the experience of my 19 year old son who has Stage II Hodgkins. From the very beginning the doctor told us that the tumors will always so up on an x-ray because of the scars left behind. If anyone did not know that he had cancer, they would want to do more research into what it was. He had six months of chemo after which his gallium scan showed no Hodgkins. Three months later when he had a cat scan done there was something they were not sure of. We were very fearful that the cancer was back because the spot was in one of the places where he had cancer before. He had another biopsy and it turned out to be the thyamous glad had enlarged due to the chemo. Hopefully this is what your mother is experiencing. I have learned from that experience to now not expect the worst. In his more recent scan it still showed the thyamus gland is still enlarged but not to worry because this is common. He will have his full round of tests next month since it will be one year since he finished chemo. I feel very positive about what the results will be. He has had to visit his doctor every six weeks since finishing chemo with scans run every three months. This is very common. After the one year tests are run, he will have to visit the doctor every three months for a year and then the following year every six months and so on. I know this is scary, but keep your head up and try not to think the worst. It might be helpful if you could visit her doctor with her to hear what he has to say. I know that hearing with my own ears is more comforting than to hear it second hand. I remember that my son did not hear everything the doctor said at times because of all he was going through and at times I had to remind him of what the doctor said. I wish your mom the very best as well as you and your family.

CindyJF

Thank you so much for your reply. I really appreciate it.

I just don't have any information on what to expect as an outcome, I guess I will have to believe that it is just scar tissue til I know otherwise. I know Hodgkins is very treatable, I hope at her age (69) that she can continue to live the long life she craves. She was and still is very active and in good spirits. Her Doctor was pleased at how she is doing from her blood tests and basically just checked out her lymph nodes for her after chemo check, as well as the cat scan, all nodes were good that she checked by hand. She has been so strong throughout this I pray that in the long run its a good outcome for her.

I will mention the PET scan to her and find out what that is as well as the thyamus gland.
She was just so bummed to learn that there was something left there? I guess she expected it to disappear which is not what happens, now I can tell her this and hope that it eases her mind that it could be just scar tissue and that most people are left with some kind of residual from the shrinkage of the tumors.

Cindy

runr

I too had stage 3b hodgkins. I finished up ABVD and 5 weeks of radiation last May. I had a scare at my 6 month CAT scan when a mass showed up where the cancer had been in my lung area. I had a PET scan and it showed it was not cancerous. My doctor said is scar tissue. She will continue to monitor it with a CAT scan every 6 months. My original tumor was 18x11 cm. It shrunk considerably but still shows up on CAT scan and my doctor said it would show up on x-rays. I would definitely check into the PET scan to give you and your mother peace of mind. Best of luck.

stepet

Okay, here is my question. Everyone is saying to have a PET scan to see if it cancerous. I had a PET scan 4 months after treatment and it showed "activity" in the same area where it was first discovered. I was told it was most likely scar tissue. I have had CAT scans every 3 months since which have been clear. I just wonder what I should think. I go for another CAT scan and PET scan in March. What is the answer if the CAT still shows nothing and the PET shows "activity". Should I still assume that it is scar tissue or should I think it is something else? It will be a year since I stopped treatment in March. Anyone with any advice would be great. Thanks

Heatherjb

I would definitely ask about the PET scan. That is what my Oncologist used to make sure the cancer was gone. Something about they use radioactive glucose (glucose is absorbed very rapidly by agressive tumors) and then do the scan and if anything shows up, that means there is still cancer cells. I finished chemo 16 months ago and radiation 14 months ago. I too have scar tissue left mostly around where the doctors took a biopsy. At my one years check up, my doctor told me that one of my lymph nodes had shrunk from 7cm to 3cm. I guess it is normal for the lymph nodes to continue getting smaller and it does not necessarily mean that there is still a tumor there.

CindyJF

Heatherjb said:

I would definitely ask about the PET scan. That is what my Oncologist used to make sure the cancer was gone. Something about they use radioactive glucose (glucose is absorbed very rapidly by agressive tumors) and then do the scan and if anything shows up, that means there is still cancer cells. I finished chemo 16 months ago and radiation 14 months ago. I too have scar tissue left mostly around where the doctors took a biopsy. At my one years check up, my doctor told me that one of my lymph nodes had shrunk from 7cm to 3cm. I guess it is normal for the lymph nodes to continue getting smaller and it does not necessarily mean that there is still a tumor there.

Thanks again for all your replies it has helped my family and my Mom very much. I wish she had a computer so she could join a group like this. I phoned her and read out the replies to her. Its always good to hear from other survivors.

I now have good faith that she will be just fine.

She is now growing her hair back 1/2 inch (darker she is 69), and feeling better and better every day!

Good luck and continued good health to all of you.

Cindy

positive

Cindy, My dad is age 70 has HD stage IIA, nod. Sclerosis, He is having his 4th chemo treatment, he lost his hair and is feeling alot of fatigue. He was a strong healthy man prior to his disease, he did not loook his age, can you please tell me how your mom did, its very hard to find people to talk with who have an older parent with this disease. please keep in touch

positive

Cindy thanks for writing back it was so good to hear from you. My dad is having ABVD every other week for one hour for 6 months. What kind of prognosis did they give your mom in the beginning, where did she have treatment. They are not doing radiation on my dad. Did your mom ever question the addditional chemo? Do you know what type of Hodgkins your mom had, my dad has nodular sclerosis non-bulky stage IIA. Sorry to overwhelm you with questions, but like I said I have never found anyone around my dads age with this disease. They gave my dad a very good prognosis. My 2 others sisters and I are nervous and the unknown or outcome of this whole experience is very scary, we don't want my dad to die. I sometimes think he is not going to tolerate the chemo. How is your mom mentally, does she have a sense of humor, is there anything else that contributed to your moms recovery. You can email me at JCM1101@AOL.com My dad is feeling this fatigue and he's not used to feeling this way, so its very fustrsting to him.