My mum had her appointment with the Oncologist today, it should have been about 6 weeks ago but was delayed due to her complications post surgery. Anyway he offered mum chemo (cisplatin and vinorelbine) 4 cycles if possible. During the appointment he kept referring to a T4 N2 tumour, I asked what he meant by the T4 part as we had been lead to believe that my mums cancer was early stage and the right side tumour was also around 1.5 inches on the pet scan in December 2016 and the left one was "microscopic" and too small to be seen on a ct scan. After the surgery (done by vats) the surgeon did tell my mum that the right tumour had grown a bit and was also in her lymph nodes on the same side. Anyway the oncologist was a bit confused at first about the T4, and said it probably did relate to the tumour size. He checked back through some notes he had made but was unable to access his computer to check fully and said the right lung tumour was roughly 8cm by 7cm and there were microscopic cells in the visceral pleura and lymph nodes and the left tumour was still a t2 and about 2.78cm. I am so shocked - she has gone from being told it is early stage - surgery with curative intent to some cells in the lymph nodes to this! I can't understand how her surgery was done by vats either as her scar is nowhere near 8cm long!! He then went on to say that everything was removed surgically with good margins etc and the chemo will give her only an extra 5% on her survival chance so she has to make a decision if she wants to go ahead considering the risks over the benefits. I am so shocked and bewildered after this it was like he was talking about 2 different people! I have looked on some of the websites and believe this means she is now stage 3B. So should chemo not be essential rather than an option? Should she not be offered radiation too? I just can't believe that this has turned out so different to what we were told.
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MissyD1
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At this time I would look for a second opinion at a teaching hospital.
Until they've completed the surgery the staging was preliminary. Unfortunately, until they got in they could not be 100% sure of anything except that it's cancer.
Both CTs and PET scans have limitations. Until a mass gets to be a certain size it will not register on a CT. It needs to get a bit bigger and have a certain level of molecular activity before it will register in the PET. During the course of my survivorship I've met several individuals who went into surgery thinking they were stage one or two and came out as stage 4. This is because microscopic examination finds extremely small traces of cancer in the lymph nodes, or like your mom's cancer, they find that it has grown into the pleura (or other organ).
I can't tell if you're in Canada or the U.K. to recommend a hospital for 2d opinion.
If this was my mom, and she asked my advice I would have both chemo and radiation. At diagnosis I was deemed stage 4. My primary tumor was 11cm x 9cm x 14cm so it was pretty large. I was told that with the most aggressive treatment I could only hope to get 10-15 months, that was 6.5+ years ago.
You don't mention if they did molecular testing. Now that they have upstaged her cancer you should insist that they test for EGFR, ALK, ROS1 and KRAS. She might qualify for a targeted therapy or an immunotherapy.
Thank you Denzie. We are in Scotland, UK. It's inspiring to read positive stories such as yours. I just feel quite overwhelmed and shocked as we were not expecting that news. The oncologist didn't mention molecular testing but I will ask on Monday at the next appointment. I don't know if my mum will take chemo and I am trying to be supportive about how she feels but I strongly feel that she should take it. The oncologist said that removing the complications she has had since surgery, he would say she is an ideal chemo candidate however in her situation she really has to think about whether the extra 5% is worth it. He said that ideally chemo would have started 6 weeks after surgery but she will be 12 weeks by next week. When I asked about recurrence if she doesn't take chemo he said that if it returns within a few months without it then it would have done so anyway.
I went for chemo for my sclc, which unfortunately did not work. I do not regret trying though as I know I would always have wondered if I could have got a cure. Even during chemo, although I had problems, it felt like the right thing to do. I am in the UK too and found the whole cancer experience from symptoms to diagnosis to treatment very poor. Not what I expected and certainly not what is presented on the tv ads where no one fights cancer alone. The whole picture was confusing, at first they were sure I did not have cancer and then when it progressed there was a lot of confusion. I read up what I could and persevered, upset a few docs on the way and eventually self paid for consultations and investigations that revealed what I suspected. My suspicions were due to information I could read online and also ask about test results. I am still amazed that the professionals in the field could miss signs that are pretty well documented. The lesson from this is to research all you can and make the informed decisions, listen to the doctors but have the information available to challenge them. I would probably ask for a written summary of your mum's current position, tumour sizes, locations, what was removed etc. They should be more diligent when documenting it for you.
I send my best wishes to you and your mum and hope that you get all the information you need.
Thank you Glynnbar8. Sorry to hear that chemo did not work for you but I am of the same thinking that my mum should at least try it as I think in time she will wonder 'what if'...
I would also say my mums experience has been poor and I do feel she has been let down in many ways. It has been constant highs and lows for almost a year now. This site has been great for me in this time.
Good information Denzie, thank you. I am surprised about the ct scan results though, as I was told that the resolution of CT was 1 or 2 mm, to find that a 1.5 inch tumour (3.75cm) turned out to be 8 cm by 7cm makes me wonder just how accurate the ct scans are. Also, the ct didn't pick up the 2.78 cm tumour in the left lung. The doc only mentioned microscopic cells in the visceral pleura and lymph nodes so I'd assume the tumours weren't largely made up of microscopic spread. It may be largely irrelevant at this moment in time as the surgery has been done, but it has really made me wonder about just how good ct scans are, which was a worry I had some time ago.
Hi glynnbar8 that's interesting about ct scans. I don't know if maybe the time scales involved from diagnosis to treatment may have had an impact in my mums case as my mums ct scan was November 2016 and the pet scan was December but she didn't have surgery until April 2017. We were assured that Adenocarcinoma typically grows more slowly but I don't know if over 5 months it can pretty much double in size...
I was at the hospital yesterday and asked a few hypothetical questions. They did confirm that Adenocarcinoma is relatively slow growing compared to things like my sclc or squamous cell. From the information I gathered I think the tumour in the left lung should have been visible and probably bigger than 2cm in November. When you see the consultant I would probably try and get all the facts as, at the moment, it does seem a confusing picture. You can't make any informed decision without correct and accurate information. It is unfair for them to ask your opinion on things like chemotherapy when you just don't fully understand what is going on. I was told that it would be most unusual for a lesion of 2cm to be missed on CT but believable it could be missed on X-ray.
I hope that you do get some answers and that it finally makes sense when you do. Let us know when you get answers, as it is always useful to have information to hand when discussing things with the medical staff.
Hi glynnbar8 than you for that additional info! And I agree we do need to know more so will be asking these questions at the oncology appointment on Monday. Unfortunately my mum has had to attend a pet scan today as after her appointment the oncologist reviewed her ct scan from 2 weeks ago and has found a small spot on a rib which he is concerned about but said it may be inflammation from a chest tube. I can't understand why this wasn't picked up when the scan was reviewed at the time but I will be asking this on Monday too... hopefully we will get some good news at long last!
I was very fortunate and my NSCLC was found at a very early stage 1B, that being said it was recommended that I do chemo. It was a lot to consider since I was diagnosed at such an early stage. I chose to do chemo since I never wanted to look back and say to myself " I wish I would have done chemo". While I realize that getting chemo is a very personal decision, and you indicated that having chemo would only give your mom a 5% great chance, I would say she should really consider having chemo. I also agree that you should get a 2nd opinion since it appears that you don't have confidence in the oncologist. Make sure to take care of yourself while you are caring for your mom.
Thank you Steph60. That's great you cancer was caught at such an early stage and I agree completely with your thinking about chemotherapy, I hope that my mum at least tries it. She is only 63 and was in reasonably good health before her diagnosis.
YOU are the person I'm looking for I had stage 1b adenocarcinoma removed-- they took the left upper lobe and the "b" in my staging was because if size--tumor was 1.9 cm. All lymph nodes clear. I have surgeon and oncologist saying no need for chemo.. just do scans every 3 months 1st year, then 6 months 2nd, 3rd and 4th year. My General practitioner gave me the "if it was me or my mom I would want chemo to be sure no sneaky cells escaped"-- Hence, my confusion-- what reason did your oncologist give for doing chemo ?? I'm 52 years old.. my granddaughter is 15 months old -- I don't WANT chemo, but I also don't want unnecessary regret!!
I talked to my oncologist since I had genetic testing done on the removed lobe that indicated I had an intermediate risk of it reoccurring with a probability of mortality at 5 years of 34% if I just had surgery. I also talked to my oncologist after I did reasearch on the internet, he confirmed what I had found. If the cancer came back I would never be a stage 1B. Based on the info I had I decided to do chemo.
While chemo was not great - I had a port and did 4 rounds. My worst side affect was fatigue, and I would do it again. Chemo was only 3 months of my life, and I intend to live a lot longer then the 3 years I gave up to do chemo.
There is not correct decision and it is very personal one. The way I got through the tough times was to tell myself that if others could make it through then I could also.
Wishing you the best. Let me know if you have any other questions or just want to talk.
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I had stage 1b adenocarcinoma removed-- they took the left upper lobe and the "b" in my staging was because if size--tumor was 1.9 cm. All lymph nodes clear. I have surgeon and oncologist saying no need for chemo.. just do scans every 3 months 1st year, then 6 months 2nd, 3rd and 4th year. My General practitioner gave me the "if it was me or my mom I would want chemo to be sure no sneaky cells escaped"-- Hence, my confusion-- what reason did your oncologist give for doing chemo ?? I'm 52 years old.. my granddaughter is 15 months old -- I don't WANT chemo, but I also don't want unnecessary regret!!
Been wanting to write this for awhile
Nerve pain after VATS surgery
Treatment Decision 
After lobectomy
