Scar Tissue or Cancer????

So I think the Oncologist scared the crap out of us today. My mom is Stage IIIB and went through chemo and radiation in August. She had a CT scan in Sept. which showed great shrinkage. There was still a mass left but doc said that it could be scar tissue and that is was a wait and see game. Mom is feeling really good, is back to work, her hair is back, she has more energy. She started a clinical trial in early Nov and at that time had to do another CT which showed that everything was still the same/stable. So last week she went in for a new CT (it is required after the clinical trial). The oncologist who is the oncologist for the trial (not her original oncologist) saw us today and was VERY concerned with the CT scan because as he said...it looked like a mess. He said that he wasnt sure if this was recurrent disease or not and needed to talk to the radiation oncologist who did the original radiation treatment in July and August to see where the radiation fields were because it could be likely that the "mess" he is referring to is scar tissue that has formed around the areas that the radiation hit. So he leaves the room and of course we think the worse. My mom is so upset thinking about having to possibly do more chemo or radiation. He comes back to say that the radiation oncologist thinks very strongly that all the stuff going on in the right lung is indeed from the radiation and not recurrent disease. Of course he says it is impossible to tell 100% but knowing that all of what he sees was in the radiation field he now doesn't see as concerned. So now we dont know...again we wait, we wait, we wait. The anxiety level in my stomach is so high. Have any of you had similar experiences after radiation. I ask him...how come there was nothing 2 months ago and now the scan is a "mess", lots of shadowy things. He said the radiation oncologist said that its very common for the scar tissue to develop well after...even 3-6 months after the radiation is over. Anyway its all so confusing. We dont know where we stand except that he has said, go home and come back for another CT in 3 months. I called our original oncologist who works very closely with the radiation oncologist to get his take after looking at the CT...am waiting to hear. Any thoughts on this. I feel like we are just in this unkown twilight zone where no one knows for sure and its virtually impossible to do anything more than wait and see if cancer grows or spreads. So confusing and annoying.
Renata

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Renata, first of all, take a deep breath. It could be exactly what the rad said, scar tissue. This in itself could create problems down the road. So, it's good to keep an eye on it. I have read on here of people that had problems in their lungs due to scar tissue from tx. So as hard as it is to wait, try not to worry. It will do no good either way. If it is a recurrence, then you will deal with it if and when that time arrives. Give your mom positive support so that she doesn't worry so much either. Take care, JC

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Renata- l have a lot of scar tissue- go bye how your mom feels as well as CT scans- one thing you guys have in the states that we don't in Canada is PET/CT scans- thats the scan l believe that will tell you if the cancer is back when you have that much scaring- l believe your moms ok they just have to keep a eye on her with all that scaring and l bet they do
How are you feeling?- lt won't be long before the baby is here- Do you know what your having? l bet your mom can't wait to hold the little one in her arms
Let us know what the how your mom makes out- but as l said l believe she will be fine

Lucy

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Sometimes a PET scan can help tell ...

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Renata - The same thing happened to me with my first CT on the trial. Scared me to death. Still don't know 100% of course, but after comparing it to all the previous scans and discussing it with the rad. onc. the onc decided it was most likely scare tissue and we would watch it. I found that "just watching" something, is hard to do, but is sometimes the only thing to do. Had my last CT in Dec., and it is still stable - which makes them believe it is even more likely scar tissue from the radiation. No guarantees obviously, and I think that is what makes this so scarey. They did discuss doing a PET/CT, but felt it might not be definitive because of the radiation. I know Dr. West at cancergrace did a posting about this at some point, but I can't find it now. I feel great, my scans are stable, and so am taking it one day at a time. I know your Mom is going to be fine.

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I have been in the "watching" mode since April 2008 when my CT scan showed a "something" in my right lung after my initial mass was gone. I get scans every 3 to 6 months and whatever it is appears to be getting smaller or staying the same each time. They have done a couple PET scans and they are getting "dimmer" meaning it is PROBABLY scar tissue from the radiation damage. It is hard to tell someone not to worry, but your Mom feels fine and I feel fine, they are monitering the "whatever" it is..so just try to live a normal life and take it one day at a time like Alice T said. There is much to be learned about this disease we have, but as long as we are alive there is progress. I believe your Mom will be fine, keep in touch with the doctors and keep a positive attitude.

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Hey there, thanks so much for your responses. good to know that some of you have also been in this "unkown" or "whatever" stage. It is so frustrating to not have any idea for sure what is on the CT scan. I am going to try and be positive and go with God. Lucy, the baby is due in 5 weeks. thanks for asking!!!

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Renetta, Please ask your mom to demand a PET scan, I have since May of last year been told scar tissue, scar tissue....I went for my last 3 mo scan at the main hospital instead of the sublet diagonistic section down the road for my last ct and that radiologist did not call it scar tissue, so a pet was ordered, turns out my scar tissue is a 8" x 3" mass, I am 49 and wish I had asked for a pet scan months ago, but was always told they give alot of false positives, well the uptake on this tumor which is in my supraclavical area directed towards the center of my chest was 9.7 and another nodule lighted up on the other side not as large and lighted up 8.6, I had markers put in the tumor this past Monday for cyberknife for the large and will undergo chemo for the other since I have already been radiation in that area. I was told today depending on how I respond to this treatment I could have 2 month or 2 years or 20 years. This will be my 3rd battle with lung cancer in 6 years. Always caught early but I am not so sure this time. Please have her demand a PET scan...

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Wow Barbara that is very interesting. Both Oncologists told me no PET at this time because its too close to radiation. They said it needs to be at least 6 months out from treatment...mom finished radiation in mid August so I think they feel that PET still will light up when it shouldnt cause it hasnt been that long yet. Tough call and I totally get what you are saying. I am gonna talk to the Onc. next week again and see what he says. Alot to think about.

Renata

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Renetta,
My husband 3b had a PET 6 weeks Post Radiation. It can show false positives, but can also give you a good idea whats going on.
The Oncologist did say he likes to wait 3 months, but understood our anxiety, so if your mom hasn't had radiation since August, I would ask for a PET.
We have the same problem, trying to determine if whats left of the Primary tumor is scar tissue.
My husband is currently on Alimta/Carbo to hopefully take care of anything that may be left.
The last CT showed shadowing in the lung, the Oncologist said it was from the radiation.
Holly

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My husband's brain tumors disappeared after radiation therapy, for around a week and a half. Then they came back with a vengeance. I'm wondering if it WAS scar tissue forming? His neurosurgeon couldn't believe it and I couldn't either. His radiologist couldn't understand. The hospitalist wouldn't budge from his assessment. He didn't live long enough to argue the point.

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Hi Renata

We just had a PET scan done and my mom's last radiation treatment was in August. We were told to wait @ least 3 months after last treatment. She had a CT in between and we are glad we had the PET just found 3 new hot spots in lymph nodes. They are very small and hope we caught them soon enough. Best of luck.

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