I think that Peggy was in total shock for a couple of days after hearing that she had tongue cancer. After all, she was not in any "risk" group. No family history, never smoked a day of her life and chewing tobacco was just out of the question. This was just crazy.
Then the medical fun began. Peggy was referred to an oral cancer surgeon who specialized in this kind of thing. He was very positive and made Peggy feel like it could be handled by surgically removing the tumor and that she would lose very little of the tongue. He seemed very optimistic that this would take care of the cancer and explained to her the problems associated with the cancer spreading. At this point he felt that no radiation would be needed and that radiation in the mouth is not a pleasant process. The surgery was scheduled through a same day surgical lab at St. John's Mercy. They scheduled it very quickly. Up to this point, Peggy's prognosis was very good.
Surgery was performed, everything looked good, the doctor thought he got it all, he took about 1/4 inch of her tongue and everyone thought that Peggy had kicked cancer's butt! She stayed overnight in the hospital and was doing very well. As soon as she could eat something they were going to let her go. Bound and determined to get the heck out of there, Peggy did what was necessary. She went home and was recooperating fast. Her spirits were high as she looked forward to her follow-up appointment so she could get back to life as she knows it and have cancer be something that has passed.
The bottom sort of dropped out at the follow-up appointment. It seems there was more to the tumor removed from her tongue than originally thought and the possibility of the cancer spreading was definitely an issue. He recommended radiation (which is what we were all hoping would not have to happen). There was also this issue that something had shown up on her neck during her CT scan and they were a bit concerned about it. When this cancer moves it goes to the neck. They took a biopsy and would have the results in about a week. It was all like having a bomb dropped on her. She felt like she had sailed through this and then all of the sudden the wind shifted. On to more appointments and more tests.
At this time some of Peggy's family members started the process of getting her to agree to a 2nd opinion. It was not because we thought her current team was inadequate, it was because if there was a way to prevent radiation treatments and still be safe, she should know about it. It is very hard though, to go through all of this again. Just the biopsys alone were very painful and the thought of going through all of these tests again did not sound to thrilling. Totally understandable, but still quite necessary. Peggy agreed to pursue a 2nd opinion at the world renowned Siteman Cancer Center which we have the privilege of having in our own back yard,
GOOD NEWS! The needle biopsy on Peggy's neck came back benign!!!! It is not cancer THANK GOD!
On to see the radiation Oncologist. They are still recommending the radiation treatment for her tongue. This is a wicked process whereby the side effects are really painful. That side of her face will be like a bad sunburn while the inside of her mouth will be raw. Her taste sensation will go away but will eventually return either partly or completely in a year. Dry mouth will be a big concern because it causes problems with the teeth. There are many more side effects but I do not want to list them all because it is just too much information. She will miss at least 6 weeks of work through this process. She has short term disability but will definitely suffer financially from the loss of work and the mounting medical bills. As one of my sisters put it, "A person fighting cancer should not have the extra burden of the financial worry that comes from all of this".
On to the next doctor appointment. The Surgeon is still recommending radiation because he feels there may be a high risk of the cancer spreading and/or coming back. He tells Peggy more about the side effects of radiation to the mouth and gives her the name of a radiation Oncologist to make an appointment with.
There was not much concern about the lump on her neck since the biopsy came back benign, however they would want to keep a close eye on it.
Peggy also was a bit worried at this point about her tongue. It was not looking the same to her but upon examination, she was reassured that it looked good!
Chemotherapy was also brought up by the Surgeon. He told her that it merely reinforces the radiation. He thought it would be minimal.
Off to the radiation oncologist. Peggy had a PET scan (which is a different kind of scan than the CAT scan and uses different ways to detect cancer). The radiation oncologist told her that the results were there was no cancer in the rest of her body but there was some activity in 2 lymph nodes in her neck. He was 90% sure that the lump in her neck is not cancer based on the previous needle biopsy that came back negative for cancer.
He went over the side effects of radiation with Peggy. As stated earlier, these side effects appear to be rather difficult (to put it mildly). Peggy also found out that she would probably need about six weeks off from work, something she was not counting on.
On to the second opinion at Siteman. This was a very thorough assessment where many tests were ran and re-ran. They did bring a different perspective to Peggy’s condition. They were concerned with her neck and decided to perform an ultrasound guided biopsy of her neck which was quite painful for Peggy. They recommended another surgery for her on her neck to remove some lymph nodes. They have a way to find out if there is cancer in her neck while she is in surgery. They also wanted to remove more of her tongue. Here we go!
Surgery is scheduled for April 29. This time she will more than likely be in the hospital for three days. All the pre-surgery tests have to be performed again. The surgery lasted about 6 hours. Aaah! The surgery seemed to be a success. They did find that the section they removed from her neck was, in fact, cancerous. Bound and determined to get out of the hospital as soon as possible, Peggy went home in two days. Physically she was doing well and was able to recooperate with no pain meds!
On her follow up visit a few days later, Peggy was concerned with the numbness in her tongue. She was told that it was normal and would be that way for about 6 months. She was then told that she would need radiation on both the neck and in her mouth and that chemo was also recommended. This news was more than a bit difficult to take. It seemed, now, to be inevitable. At this point Peggy is feeling like nothing she is doing is working.
This whole process will take approx. 7 weeks, 5 days a week. Peggy will be out of work for about 3-4 months. Her radiation and chemotherapy treatments are scheduled to begin on June 15, 2011.
If you are reading this, please take a moment today to say a prayer for my sister Peggy. She is such a strong person and we pray that she remains strong as she battles this disease. We know that GOD has her in the palm of his hands and all prayers will help her through this!
There are so many good things going for Peggy. She found this early and the early detection has made a difference. She has a huge family who try to be there for her through every appointment, every disappointment and through every good day. She has so many people praying for her and wishing her well and she is overwhelmed with the thoughfulness and kind words from so many people. All of this will help Peggy get through this next stage of fighting this cancer!
