Hi Sherri,
Is the location of the spot the same as the location of the original tumor in the lung? If not, do you know what happened to the original spot(s) in the lung? Was the original lung tumor ever biopsied and definitely diagnosed as cancer? If not, doctors probably assumed it was cancer because of the liver spots, but it is possible that it never was cancer to begin with.
There are many things that can "light up" a PET scan - even past pneumonia or a smaller lung infection can do it. The doctors should absolutely know this and should have explained it to you from the very beginning. It is critical that you get an accurate diagnosis about his lung so that you can approach his treatment correctly, and it sounds like you are on the right path to figuring this out!
The good news is that they did a biopsy, I'm assuming on the larger "golf ball" part, and it came back negative for cancer. Since the doctors are stumped, I would ask for a second biopsy just to be sure - labs do make mistakes, and if this is definitely cancer then you want to know asap - again, a correct diagnosis is critical to your husband's treatment. Don't let the doctors assume that they know what is going on - force them to try every which way to figure it out, even if they have to repeat some tests to be sure.
A few questions - is your husband getting the CT and PET scans on the exact same machines that they used before? Have the machines been serviced since he got the last scan? Using different machines means that the scans can show up in different ways. Sounds strange, right? All machines should be the same and show the same things, right? That is not always the case, so just double check and discuss it briefly with your doctor.
A couple of other questions too - Where is your husband being treated? I am assuming that the doctors there felt that neither the liver or lung tumors were resectable (surgically removeable) at the time your husband was diagnosed? Are they doing chemo with the idea that it might reduce the size of these tumors so that they can hopefully operate on them later? That should be the plan (as long as that is what your husband wants to do) and if it is not, I would start asking a lot more questions.
I would also be sure that you have a good second opinion (at an NCI-designated cancer center if at all possible) to make sure that the tumor(s) he already has can't be taken out surgically. If they can possibly be removed, that is the best chance for long-term survival. If they can't be taken out at this time, the goal should be to try to find a chemo that works to reduce the size in order to get rid of them. Again, surgical removal of the tumors should be the goal because that offers the very best chance of long-term survival.
There are increasingly more options for removing tumors from both liver and lungs - although they may not be an option for him right now, you might want to start looking into things just a little bit so that you are prepared (in your spare time - haha!). Check out radiofrequency ablation (RFA), which can be used on both the liver and lungs; Sir Spheres (
www.sirtex.com) which delivers internal radiation to tumors in the liver; and chemoembolization, which delivers drugs directly to the liver in greater concentrations than IV drugs. There are others also - don't beat yourself into the ground doing research, but maybe look around a little bit and ask doctors where your husband would need to be in order to receive one of these treatments. I bring all of this up because if the lung truly does not have cancer, and it is all confined to his liver, that could mean that he could be a candidate for some of these procedures.
As for his fever/infection - there are a lot of reasons that he might have had a fever. Chemo really does a number on the body's immune system, making it much more vulnerable to infections. Oxaliplatin is especially hard on the bone marrow - it decreases the white blood cells, making patients on it even more likely to get sick (flu-like symptoms are very common). Also, the longer you take oxaliplatin, the worse the side effects can be - so it is possible that this only came up after he stopped taking it. It is also possible that you will never know the exact cause of his fever, and you will just have to move past that and hope that it stays away.
Do not be afraid to be aggressive in your research, ask lots of questions of your husband's doctors, and post any questions/issues here. Sorry to throw all of this at you at once - I know that it's a lot to take! Please let us know more and ask as many questions as you want to so that you get the information you need!
Hannah
Hannah K. Vogler
Co-Founder, The Colon Club
cousin of Amanda Sherwood Roberts
dx 1/99 Stage III at age 24
died January 1, 2002 at age 27