The waiting never ends for cancer patients unless death intervenes or after a long remission, usually 10 years. In my case, even though the cancer was successfully removed, the chances of cancer returning within the next few years are 80% according to genetic testing and 100% expected to be the cause of my death should I live to be over 90. I have yearly testing and sometimes it takes 2 weeks for the complete results. I have been waiting 2 years for my visit and test at the Oncologist/Urologist specialist. I was canceled because of covid and now just on a call-back waiting list as he is two years booked with those that have cancer and are waiting surgery after chemo. Since many new cases are proven cancer, I will continue to get bumped. The only way I can get moved up is to have a current detectable cancer. No thank you! The wait is long but I am patient and happy that my yearly test shows negative. Being a cancer survivor is teaching me patience.
This is true, and the scariest part of a cancer diagnosis... there is no cure. People may have periods of remission but the possibility of recurrence is always hanging over their head. My BC is a type that has a high recurrence rate, particularly in the first couple of years post treatment. Not reassuring to think about but that's going to be my life from now on. I hope you remain a survivor, Faye. Is it possible to have a screening at a different doctor/facility?
Well, I am back and here is the news. Both lungs have nodes and they have to go. Also, the thyroid is questionable. I have to call the oncologist tomorrow for an appointment. I also have to use an inhaler for my COPD. We did pulmonary function studies which took up a lot of time. Yet my oxygen levels are good. Go figure. Stay tuned.
So are you saying the nodes are cancerous, TC? (I assume so since you're calling an oncologist.) Will they be treated with radiation or surgery? I know that many lung cancers are very treatable nowadays, so keep your chin up. Great news that your O2 levels are good!
@Terry Coywin , did the nodes show possible cancer or will that be unknown until removal? Good pulmonary function is a real plus! Recently a friend had nodes removed from his lungs and they were benign. The doctors were sure they were cancer because of his stage 3 colon cancer that got into his lymph nodes. @Beth Gallagher The screening and surgery this Oncologist/Urologist does is based on previous cancer genetics test. My regular PCP and Oncologist keep an eye for any sign of cancer and should it appear they can have a surgeon remove it and surrounding tissue, but it is possible to go undetected until too late. Chemo would probably kill me. This specialist is one of a few in the world and maybe only one in the USA that can remove the parts before cancer and get Medicare to pay for it. In fact, the only one my doctor knows that can do such surgery based on how he reads and understands my genetics and the results of his specialized test. I will send you a PM.
I have been unable to follow NIH research these days, but at one point in the past, NIH had both a test and a therapy under development that would have been a Godsend to cancer patients. They had/were developing the ability to customize immunotherapy based on a specific tumor. As far as I know, it wasn't being applied to blood cancers. In any case, the tumor tissue was sent to their laboratory and a tumor-specific antibody was developed and supplied to the provider. As an adjunct to that, a tumor-specific screening test was to be developed so that in subsequent months or years, a blood sample could be taken and run against the tumor antibody as a test for recurrence. It would, in theory, do away with the imaging tests unless it came up with a positive result. It would do so much to relieve the stress on CA patients. I no longer have access to the research information, so I don't know what progress has been made, if any. Perhaps the FDA has pushed it to the side.
Scary, but at least you now know better what is going on, and they have a treatment plan for you. With the nodes being in your lungs, that might be affecting your breathing ? Do you have one of those little finger things that measures your oxygen level ? Sending prayers, and a great big HUG, @Terry Coywin !
Yes, Yvonne, I have a few oximeters and as a nurse always carried my own with me to use on patients. My oxygen levels are excellent. Go figure.
@Fay Fox, the oncologist radiologist will want to aim a beam at the nodes to burn them out. No sign of lymph involvement.
Right now radiation is the ticket, Beth since there is no lymphatic involvement. The thyroid is another matter to be explored.
@Terry Coywin I know several treated with stereotactic radiosurgery (SRS) with a very high success rate. It is a very focused radio beam that burns the tumor without affecting the surrounding tissue. While not good that you have to deal with this, it is great that the tumors were found before they metastasized.
Taxol chemo #5 is history! I'm getting the hang of this chemo thing. Just 7 more weeks of this, then on to the harder stuff. @Terry Coywin -- any news on your treatment? Have you met with the oncologist yet? Thinking about you these days.
I see the oncologist tomorrow, Beth. After seeing the PET scan and then reading the full results on MyChart, I am not a happy camper. I didn't close my eyes last night at all. Part of it I guess is the lack of support system on my end. But that's another story.