stokedsurfer Posted January 31, 2017 Share Posted January 31, 2017 Hi, My mother (70yo) was diagnosed with NSCLC adenocarcinoma. After doing all the exams, including PET and biopsy, the diagnosis is stage T2aN0(vsN1)M0, to be confirmed after surgery. She will be undergoing surgery tomorrow. This were of course devastating news for the family, specially because we lost my twin brother 3 years ago to a small cell fulminant lung cancer. I came to this forum while in search for all the best possible information available. Thank you Quote Link to comment Share on other sites More sharing options...
Donna G Posted January 31, 2017 Share Posted January 31, 2017 Hello stokedsurfer, Glad your mother Is able to have surgery. Sounds very sad that you lost your brother to lung cancer. He must have been very young. This is really a stressful and challenging diagnosis Hope your Mother tolerates the surgery well tomorrow and she is able to be up and walking soon. Keep us posted. Donna G Quote Link to comment Share on other sites More sharing options...
stokedsurfer Posted January 31, 2017 Author Share Posted January 31, 2017 Thank you Donna, My brother was only 40, and it was all so quick...two months. And now mom. But hey, she was diagnosed in an early stage, she is eligible for surgery, she is incredibly determined and strong, so we're up for a fight. I will update you on her evolution while I search for your advice and experience. Quote Link to comment Share on other sites More sharing options...
stokedsurfer Posted January 31, 2017 Author Share Posted January 31, 2017 One thing is bothering me. She was not tested yet for mutations and her oncologist (pneumologist) did not brought up the issue. And tomorrow she will be in surgery, so we really need be to be sure that they will test the resected tissue. Quote Link to comment Share on other sites More sharing options...
Tom Galli Posted February 1, 2017 Share Posted February 1, 2017 Stokedsurfer, Wow - the TNM staging system. I haven't seen that for a while. So your mom has a single tumor greater than 3cm but less than 5cm (T2a), with no lymph node involvement (N0) and no metastasis (M0). Surgery is indeed indicated and she'll likely have a course of chemotherapy after surgery and after she recovers from surgery. We have some very good information on lung cancer. Here is some information about adenocarcinoma. And here is some information on lung cancer surgery. You may find some of the questions in this section useful to ask her surgeon after tomorrow's procedure. We visited Sintra, Portugal a couple of years ago and noted it was an active surfing community. We also spent way too much time eating delightful Pasties de Belem and likely put on a few kilos.... Welcome here. Let us know how your mom's surgery went and of course if you have questions, feel free to ask. Stay the course. Tom LaurenH 1 Quote Link to comment Share on other sites More sharing options...
stokedsurfer Posted February 1, 2017 Author Share Posted February 1, 2017 Dear Tom, Thank you for your reply. Sintra is indeed a beautiful and unique village, just a few km from Cascais where we live. I'm glad you had a good time over here. I've been reading all the outstanding information links you posted also in other topics. I have to say that I found here the most comprehensive compendium of information around. My mom will be undergoing surgery today, her tumor is 4cm with no metastasis; in relation to the lymph nodes involvement the N0 has to be confirmed after surgery because the PET showed some residual activity in the hilar nodes that was suggested to be of inflammatory nature. She will be operated in one of the leading research institutions in Portugal, The Champalimaud Foundation http://www.fchampalimaud.org/en/ . In her case the procedure will be a right upper lobe lobectomy with a single port minimally invasive approach. The Da Vinci robot surgery was over the table but she would have to wait until next Monday so along with her doctor we decided to have surgery immediately. Tom Galli 1 Quote Link to comment Share on other sites More sharing options...
stokedsurfer Posted February 1, 2017 Author Share Posted February 1, 2017 Hi, I'm happy to say that my mother's surgery was a success. Tomorrow I will speak with her oncologist to understand her ideas on treatment and on the possibility of having the resection tested for mutations. LaurenH and Tom Galli 2 Quote Link to comment Share on other sites More sharing options...
Donna G Posted February 2, 2017 Share Posted February 2, 2017 Strokedsurfer thanks for your update . That is great news. I pray her recovery continues to go smoothly. I hope you let us know what the Oncologist says and what the future plan will be. Donna G stokedsurfer 1 Quote Link to comment Share on other sites More sharing options...
stokedsurfer Posted February 2, 2017 Author Share Posted February 2, 2017 Thank you Donna, I really appreciate your support. I still have so many doubts on how to proceed from here, the mutations testing, best possible treatment, is chemo standard after surgery in her case, better here at home or abroad... I'm really happy I found this forum and wonderful people like you who cares. Quote Link to comment Share on other sites More sharing options...
LaurenH Posted February 2, 2017 Share Posted February 2, 2017 Hello, stokedsurfer, and welcome to LCSC! I am happy to hear that your mother's surgery went well. Please continue to share updates. I am also glad to see that you've already connected with Tom and Donna. This community is a great place to ask questions and share stories. Please let us know how we can help you navigate your mother's treatment. We have many resources available, including the Lung Cancer Navigator App and the Lung Cancer Helpline. I am happy to help you find the information and resources that you need. With gratitude, Lauren -- Lauren Humphries Digital Community Manager stokedsurfer and Mally 2 Quote Link to comment Share on other sites More sharing options...
Tom Galli Posted February 2, 2017 Share Posted February 2, 2017 Stokedsurfer, Wonderful news! Get the recovery underway. My understanding is that adjuvant (post surgical) chemotherapy is pretty standard. Of course, her oncologist should be able to answer that question. If the chemo is not exotic (requiring hospitalization) and it shouldn't be, I'd suggest it be administered in a place proximate to your mom's home. For me, the dedicated small clinic was a better choice than a large hospital setting. Stay the course. Tom stokedsurfer 1 Quote Link to comment Share on other sites More sharing options...
stokedsurfer Posted February 3, 2017 Author Share Posted February 3, 2017 Thank you so much Tom. I'll answer here also in relation to your kind post on the mutations topic, I don't want to mislead anyone from the us with our situation in Portugal. I already spoke with my mom's oncologist and this is what she had to say on the next steps: 1. First we have to wait the results of the testing of the lobectomy and linfadenectomy tissue. She thinks that the tumor could very well be a combination of two kind of tumors, one "more inactive" and the other one, much more aggressive, that concern her the most. She says that the 4 cm initially measured are the sum of this two tumors. 2. If it comes out that the "aggressive" tumor is around 2 cm then they wont give her any chemo. If it is bigger then they will. Of course it is also important to know if there is any involvement of the lymph nodes. 3. Mutation testing. She insist that is to early; meaning that if she needs to receive chemo immediately it wont be a target therapy based on her possible mutation. It will be "standard" chemo. On her opinion the target therapy is an option from stage IIIb. Quote Link to comment Share on other sites More sharing options...
stokedsurfer Posted February 3, 2017 Author Share Posted February 3, 2017 My mother has decided at the last minute to have surgery here in Lisbon because this center is a research institution and should be aligned with the best centers in the world. But if we think that she could be treated better in another location we have no problem in traveling abroad. There is an Anderson Clinic in Madrid we can ask for a second opinion or we could go to the us. Quote Link to comment Share on other sites More sharing options...
BridgetO Posted February 3, 2017 Share Posted February 3, 2017 My situation is in some ways similar to your mom's I'm 71. I had a lower right lobectomy in November for a small tumor. It was in a location in the center of the lobe where they couldn't do a biopsy without taking it out. My tumor had no aggressive component though--it was so slow growing that it didn't even light up on the PET scan. Lymph nodes were taken out and were negative. It was adenocarcinoma Stage 1. Since the tumor came out with clear no chemo was recommended. So chemo is not always the standard, I think. I will have to have CTs every 6 months , because of the risk of recurrence. Tumor genetics showed a KRAS mutation. From what I've found on the internet, KRAS tumors don't respond well to chemo and there's no targeted or immunotherapy for them, so it's good they got it all out. I'll be seeing my pulmonologist next month with a lot more questions. I's like to say to you and your mom that I've recovered really fast from my surgery and my life is pretty much back to normal. Also, it looks like you're doing all the right stuff. When you get the pathology and mutation testing, spend time to be sure you understand as much as possible about them. Ask questions. Look things up. If you're not sure about what you're being told, a second opinion is a good idea. It's great that your mom has you to advocate for her. Tell her hi from another old lady who's doing well after surgery and looking forward to getting MUCH older. stokedsurfer 1 Quote Link to comment Share on other sites More sharing options...
MaryTD777 Posted February 3, 2017 Share Posted February 3, 2017 Hello Stoked surfer,I am also very happy to hear that your mom was Dx early & her surgery went well! Some doctors order some post op chemo to sweep up in case anything was left behind. Obviously, if only some order it, some don't. The doctor might want to wait for pathology results to see if clean margins were removed... that they took enough extra tissue around the tumor to be certain nothing was left behind. What is important is mom & how she feels! It sounds like you got doctors who have this goal as well. I will keep my fingers crossed for the best outcome with the least harm to mom brings a great many years of healthy enjoyment for all of you! I don't know if there was any testing done regarding mutations on your brother's tissue, but with a mom & brother both Dx, I would be thinking of some testing for yourself & any siblings you might have. Better safe than sorry as they say. Take care, Mary Sent from my SM-N920V using Tapatalk LaurenH and stokedsurfer 2 Quote Link to comment Share on other sites More sharing options...
stokedsurfer Posted February 3, 2017 Author Share Posted February 3, 2017 Dear Bridget and Mary, thank you so much for your kind words. The test results on the resected tissue and lymph nodes should be ready on Tuesday, finger crossed. In the meantime we activated my mom's insurance that has a "best doctors" international coverage with access to the leading centers in the US and EU. We will hear what they have to say on her case. Today she's feeling more pain, which is normal I think. She didn't slept very well so the nurses gave her some pain killers. Nonetheless she goes alone to the bathroom and she can already lift her arm above her head. Step by step. Quote Link to comment Share on other sites More sharing options...
stokedsurfer Posted February 3, 2017 Author Share Posted February 3, 2017 Mary, I already did all test 2 years ago and I'm now doing all of them again. It is now clear that I have to do controls regularly at least once a year. Thank you for caring. All the best for you. Quote Link to comment Share on other sites More sharing options...
stokedsurfer Posted February 5, 2017 Author Share Posted February 5, 2017 Wonderful news today! Mom's was discharged from the hospital and she's back home, strong and very positive. She already goes up and down the house stairs like it was nothing, and she's able to do everything by herself. God thank the single port VATS! By the way, today reading her discharge documentation we discovered that she had a right upper and middle lobectomy...we were astonished because neither the Prof. nor his assistants said anything about that during her stay. So we called the assistant thoracic surgeon that signed her discharge (they all three gave us their cell nº) and she told us that in her case the upper and middle lobe were "as one" so they had to also take the middle lobe, even though the tumor was confined in the upper one. She also said that it would not make a difference in her recovery. I'm just happy she's back home and looking great. Her next visit is on the 13th but I expect to know the results of the tests by Tuesday. Finger crossed. LaurenH and Mally 2 Quote Link to comment Share on other sites More sharing options...
Tom Galli Posted February 6, 2017 Share Posted February 6, 2017 Wonderful news! Stairs already. Remarkable! Stay the course. Tom Mally 1 Quote Link to comment Share on other sites More sharing options...
stokedsurfer Posted February 16, 2017 Author Share Posted February 16, 2017 Hi! We got the results from the pathology testing after surgery and we got the best possible news. The tumor was only 2.5 cm and there wasn't any nodes involved so the pathologic stage is Ia. She already had the follow up visits with the surgeon and the oncologist and they both agree that she does not need to go through adjuvant therapy. Next visit is in 30 days and she will do only a thoracic CT scan to check the situation. After that she will have check ups every 3 months in the first year and every 6 month on the second year. In the meantime we received the second opinion from the "best doctors" insurance coverage; the doctor is Michael Rabin the clinical director of the Dana Farber's Lowe Center for Thoracic Oncology in Boston. The report is very meticulous and well written but unfortunately is based on the staging we had before surgery; we will send them all the new info and hear their opinion. I've been reading some clinical studies and it seems that there's no clinical advantage in giving adjuvant therapy in stage Ia but of course I would love to hear your opinion on the matter. Cheers Sue1147 and LaurenH 2 Quote Link to comment Share on other sites More sharing options...
Mally Posted February 16, 2017 Share Posted February 16, 2017 Thats great newsSent from my SM-N920I using Tapatalk Quote Link to comment Share on other sites More sharing options...
Tom Galli Posted February 16, 2017 Share Posted February 16, 2017 Stokedsurfer, Great news about your mom's recovery. As to your question about adjuvant therapy for Stage IA patients, it sounds like your mom's oncologist and surgeon are in complete agreement. That would end my research. Stay the course. Tom LaurenH 1 Quote Link to comment Share on other sites More sharing options...
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