I am a 47 old female quit smoking over 10 years ago. I am 5 weeks out from having left lower lung lobectomy for Invasive Mucinous Adenocarcinoma Lepidic pattern and associated colloid carcinoma component. Tumor was around 1.2 cm. Around four years ago they found the nodule on my lung when they did a CT for right side pain.. Around 8 months ago the nodule grew to 9mm. They rescanned 6 months later and it was at 11mm.. That was 8 weeks ago.. They sent me for a pet scan and the pet was negative. Then they sent me to a thoracic surgeon. He wanted to remove the nodule but did not think it was cancer. Needless to say when I woke I learned it was cancer and they removed my left lower lung with VATS. I was told since no lymph nodes were involved that I was not need chemo or any other treatment. I spent 8 days in the hospital because I also had a Chyle leak form the surgery. It all happened so fast. I am now 5 week out from my surgery. I was very active before my surgery. I am a realtor and I worked long hours. I have so many questions and would love to hear from others. I stopped taking pain pills during the day after three weeks. I still take them at night because I seem to have more pain at night. Is this normal? I also get bad headaches in the evenings now. I never had headaches before the surgery. I have slowed my pace down a lot. No matter what I do all day by the end of the day I also have a lot of upper back pain. I have never talked with a oncologist just my thoracic surgeon. Is this normal or should I be talking to an oncologist also? I am also worried because my right lower lung has had ground-glass opacity around 11mm for years also. The surgeon did not seem to worried and said we would just watch it. Is this an indolent growing cancer? Is it BAC? My doctor had said something about being mixed?
Invasive Mucinous Adenocarcinoma Lepidic pattern and associated colloid carcinom - 1293357
grammy1269
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Reply # - October 20, 2017, 07:14 AM
Hi grammy1269,
Hi grammy1269,
Welcome to GRACE. I'm sorry to hear of your diagnosis, but it's good news that the PET did not show any distant spread. In general, when you are at a decision point, I think it's good to get a second set of eyes reviewing your situation. Usually that is a second opinion from the same type of doctor with whom you've been consulting. In your case however, since the surgery has been performed and you've never seen an oncologist, I think it would be a very good idea to have a consultation with a thoracic oncologist, preferably one at a hospital affiliated with a good medical school. The decision point for you is whether you should have further treatment or watchful waiting, and at the least I think you would feel reassured if the oncologist agrees that no further treatment is warranted at this time.
As far as the symptoms you are experiencing, your local doctors are in a much better position to determine the cause. Pain and fatigue are certainly common after surgery, and headaches can have a variety of causes, including the pain meds you are taking. It would be a good idea to have a consultation with your surgeon and/or a dedicated pain specialist to find the cause and hopefully some interventions which can reduce your discomfort.
JimC
Forum moderator
Reply # - October 20, 2017, 08:29 AM
Hi Jim,
Hi Jim,
Thank you so much for your response. I has posted on another Lung Cancer site and someone reply I should post here because they said it was an " indolent lung cancer"? Like I stated before everything just seemed to happen so fast and now I am recovering with tons of questions. I am trying to understand the cancer that I have or had.. The thoracic surgeon is a thoracic oncologist I believe. He was at James Graham Brown Cancer Center. He has been really nice but we have not gone into the details of type of cancer. I have dealt with autoimmune rheumatic diseases the last ten years. They go back and forth with Scleroderma and Lupus.. I know that you have to do your own research and understand what is happening with your body. I am not sure that I am comfortable with just waiting and watching, so I want to know how others with the same cancer have progress. First I need to understand what cancer I have??
Reply # - October 20, 2017, 09:14 AM
Hi Grammy,
Hi Grammy,
From what you've written and your doctor has said, it sounds as though you have a combination of BAC and a more invasive adenocarcinoma. That combination is not uncommon, and it sounds as though your doctor feels as though he removed the invasive component and what is left is closer to pure BAC, which tends to be non-invasive. With BAC, it is possible to over-treat it, since it can be quite indolent, going years without requiring any intervention. It might help to read some of Dr. West's posts on BAC, several of which are collected here.
JimC
Forum moderator
Reply # - October 20, 2017, 09:38 AM
Thank you Jim. I have already
Thank you Jim. I have already read most of them. I will look back over them.
Reply # - October 21, 2017, 07:48 AM
Hi Jim,
Hi Jim,
A couple more questions. I see that people talk a the genetic factors. Do they not automatically test for this? I do not see anything on my report about it. The only thing I see block A3 is stained for immunoreactive TTFI, Naspin A, Ck20, Ck7 and CDX2.
It states neoplastic nuclei reveals strong positive for TTFI and strong cytoplasmic positive for Napsin A and Ck7. Negative for ck20 & CDX2. What does this mean?
Reply # - October 21, 2017, 07:48 AM
Hi Jim,
Hi Jim,
A couple more questions. I see that people talk a the genetic factors. Do they not automatically test for this? I do not see anything on my report about it. The only thing I see block A3 is stained for immunoreactive TTFI, Naspin A, Ck20, Ck7 and CDX2.
It states neoplastic nuclei reveals strong positive for TTFI and strong cytoplasmic positive for Napsin A and Ck7. Negative for ck20 & CDX2. What does this mean?
Reply # - October 21, 2017, 08:02 AM
Hi grammy,
Hi grammy,
The results you describe are diagnostic in nature, to identify the particular type of cancer (i.e., lung cancer). Genetic testing is often done routinely via a separate testing process, but if that hasn't been done you can ask that the tissue be sent for mutation testing. The surgeon may not have done that since he doesn't believe that further treatment is necessary at this time, but the mutation status is good information to have should a decision be made to initiate systemic therapy.
JimC
Forum moderator