August 17 the doc said that there has been no growth in 3 months, so he doubts the two larger ones are cancer. As for the 10 waiting in the wings, he completely dismissed them.
Am I right to feel a little concerned that he said this without a biopsy? I so want to go with what he said but the idea of a biopsy to confirm it is nagging at me.
anrean, No growth is wonderful news, however I have found in my treatments I had 2 excellent non related doctors that were not oncologist recommend to me to pursue all options and get second onions. Can they do a Ct with/without contrast to help put your mind at ease. On the other side of the coin is not o mortgage your past to your future.
Be proactive !!! What ever that might mean to you
SBLT, they did a CT with contrast, but all that does is show whether it is growing or not. I would feel far more comfortable with a biopsy to confirm that it isn't cancer. Roswell is an excellent cancer institute, but I knew something was wrong with the first tumor and they wanted to wait and watch so I got a second opinion - the second opinion did the PET scan and then biopsy that confirmed cancer. I think I am going to take this up with my pulmonologist and see what he has to say. Don't want a procedure if it isn't necessary, but wait and watch is nagging at my instincts to want to be certain, Don't want to wake up one day and find out that it is cancer again and could have easily been handled by being proactive instead of reactive. I just can't get away from the feeling that I need confirmation for my own peace of mind.
Go with your gut. You know your body better than anyone. Consult you pulmonologist and get that second opinion. It is your life.
My doc just knew I had cancer I knew he was wrong.it was a seed I had inhaled a year earlier.biopsy was neg but pet scan glowed and had I not protested I would have ended up with a lobectomy.its OK to ask a lot if questions
I recall your situation. So glad you did not have surgery. My case is a little different though, since we already know one of the tumors was cancer - they radiated it because I declined surgery and chemo.
I have a wedge refection instead of a lobectomy as soon as they got in there they saw it was an infected seed.isn't that gross
Wonderful news! I do understand your need for more certainty, though. Getting a second opinion is never a bad idea, and this is a perfect time for getting one. As Jean said, always trust yourself. Please let us know what you decide!
Anrean, there are fungal infections that manifest as nodules of in regions across the US. Here in Michigan we are told that 50% or more of our population will die with nodules caused by the fungi and never know it was there.
If this was cancerous it's likely that it would grow. A biopsy is an invasve procedure and with each one you run the risk of causing a collapsed lung or a pulmonary embolism. The standard of Care is watch and wait. That's based on their experience of watching hundreds of thousands of patients over the course of several decades.
If you want to pursue this by all means push it Ask about having a liquid biopsy to look for circulating RNA. If there's progression it should show up that way.
Thank you, Denzie. I am concerned because the last time they wanted to watch and wait the NP also neglected to tell me about 2 of the larger ones and the 10 waiting in the wings. I knew something was wrong and pushing her didn't budge so I went for a 2nd opinion. The 2nd opinion did a PET scan that lit up "like a Christmas Tree" and so they did a subsequent biopsy and that is how they found the cancer. I would rather not have an invasive procedure, but it is nagging at me because I have the slow growing subtype. If they were comparing from 6 months ago I would feel much better, but they aren't - they are comparing from 3 months ago. Wait and watch is the standard, I just don't want to wake up one day and find out that yet again it wasn't the right approach. In its most basic terms, I am scared and the apptmt Thursday did not put those fears to rest. Having had cancer for 5 primaries, I'm spooked.
I'd forgotten about those other primaries. Sorry, I usually try to r view what each has shared about their disease before writing. When your dr said that you have the slow growing type of adenocarcinoma did they say anything about adenocarcinoma in situ or lepidic carcinoma? Did they test for mutations beyond egfr and alk?
Unfortunately the 2nd opinion folks will not share any of that information either with the patient or with Roswell. I know only that the "L" word is involved and that means it is slow growing. Will not go back to 2nd opinion people because they are being investigated by the FBI - huge write up in the paper about CCS Oncology; I did not know this until after dealing with them. It is not in situ. that I am sure of. Have no idea about mutations because CCS refuses to share any info from the biopsy. Feel like I am between a rock and a tight place.
With the 2nd breast cancer I had DCIS in situ hiding behind Ductal Invasive Carcinoma - Roswell did not realize there were 2 tumors until the pathology came back - I had to have 2nd surgery to get clean margins. Turned out to be a triple positive and a triple negative at the same time. Guess my immune system likes to play nasty games.
I am pretty good about writing down questions, but Roswell did not answer about mutations. Not sure if we got side tracked or they just don't know because of CCS's policy of not sharing. There is also an "M" word involved in the lung ca, but I don't know what that means either.
Sorry I cannot be more helpful - there were so many long medical terms that I just didn't understand what they were saying.
My gut is telling me to get another 2nd opinion, but at the same time I don't want to make Roswell angry - they have been with me through everything since 2002 and until now I have 100% trusted them with my life.
Hi Anren, if you feel that strongly about a second opinion then by all means go for one. I also have a slow growing cancer, carsonoid lung cancer, my middle lobe was removed. It's been 3 years and have been in 2 remissions. This last one didn't even last a couple months. So as you know cancer is so unpredictable, go with your instincts , I don't think you'll be sorry. And for goodness sake, don't be afraid of making anyone angry! It's your life!
Oh my, I completely agree - who cares if you make someone angry???? Besides, I doubt you will, it is standard to get second opinions. Honestly, follow your instincts here. You are the one living in that body, and you know it well! Hugs.
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