Well here is where I will finally begin to try and document everything that has happened in the past few years. I did not find this site the first time around but have done a lot of reading on the subject of Oral Cancer as we have moved through this time in our lives.
My daughter Brandy was initially diagnosed with SCC in 10/2006. She found the spot and went to the dentist thinking it was just a cavity as it was a black spot that showed through her front teeth on top. She was sent for deep cleanings and such and finally was referred to an oral surgeon as the spot had grown about 10 times what it initially was within about 2 weeks. Biopsy was taken and the oral surgeon called and said he wanted to see her that afternoon and to bring someone with her. She called me and I said then you call them back and ask them if they want someone with you because they are going to do more work or for some other reason. Brandy called and immediately called me back and said well it isn't good. Went to see oral surgeon that afternoon dx SCC and referred to H&N surgeon. All appropriate protocol performed and surgery was scheduled and done 10/06.
As you all have encountered this disease is treated by a multidisiplinary team of doctors and the one that was assembled at that time to treat Brandy was a "treat" to behold. My girlfriend and I enjoyed that part and shared it with Brandy that we almost swooned as when Dr. Bell (oral maxillofacial surgeon) also Dr. Bell had an assistant Fellow from OHSU that was in surgery to assist but I don't remember his name, Dr. Timm (prosthedontist), the anesthesiologist were all "Hotties". Man they were a feast for the eyes all of the big, tall and beautiful. The only part of this crap that I can say I've enjoyed.
You women out there would have enjoyed it!
The first surgery they removed 7 teeth and bone upper maxillary along with the roof of her mouth. Flap to close hard palate taken from her left upper thigh. Brandy had a prosthetic made to replace the teeth and bone. It has worked pretty well for her after they made the permanent one but eating has changed a bit as she can't bite down as easily except with smaller bites.
At the time of dx and surgery her apartment lease was up so we moved all her stuff except for clothes into storage and she moved back in with her dad and I for recovery as we did not know what to expect at the time. Brandy actually recovered pretty well has followed up with H&N surgeon regularly and has quarterly CT scans to watch for reoccurence. All CT scans have been clear through 2008, a little over 2 years.
During this time, I knew that Brandy needed to get back into her own "space" so during her recovery Brandy and I took on a remodeling project of a 3 bedroom house she would rent from a friend. We thought this would be a somewhat superficial paint, new carpet type remodel, but blossomed into a major remodel inside and out which also gave her something to do and look forward to. We moved her back into her own home in October 2007 and is still there and quite happy I believe.
Now I will expand a little more on Brandy as she seems to be a little more unique and different then a lot of folks out there. Brandy has had some health issues over her life and one of those is she has had gout since she was teen but misdiagnosed with attacks as cellulitis because none of the doctors seemed to want to admit she had gout. For those of you that don't know gout is a form of arthritis which is very painful as to much uric acid builds up in the joint and they form crystals that are very hard and sharp so causes much inflammation and pain of the joint. But the misdiagnosis has caused her kidney problems and so now only has about 50% function of her kidneys. So when they do a CT scan of the H&N with contrast it is an all day affair of being in the hospital and monitored until all the stuff has traveled through her kidneys. She's always had skin problems, allergies, double bunionectomy fully cast on both feet at a young age.
Brandy has always been just a petite little being as she is 4' 9" tall and weighs in about 90 lbs dripping wet. She weighed a bit more then that before her surgery and dropped down to 89 lbs at her lowest during that time.
Since the initial surgery for the cancer even when they put the flap back in Brandy's hard palate, there has always been an open hole into her nasal cavity in the roof of her mouth. Which even with a prostheses they can't make it absolutely air tight to the roof of the mouth so if she holds liquid in her mouth to long it starts to come out her nose, or if she is sick and throws up, well that stuff can happen too and it is not fun to live with. We have also during these two past years discussed the surgery to fully rebuild her maxillary area with bone and skin implants but made the decision not to for many varied reasons. But we did discuss and were going to have a surgery to fill that hole in the roof of her mouth. The hole surgery takes a full month with nothing in your mouth as your tongue is cut and sewn to the roof of your mouth to fill in the hole. Your tissue starts to regenerate and fill in and grow its own, the tongue is then unsewn I guess and everything heals and fills in. But as you will see we didn't make it that far. So that was her "new norm" for the past couple of years.
So in late January Brandy told me about a small white flap of skin on the roof of her mouth that was not painful but in the way of her prostheses. Made an appt. to see her H&N surgeon and he did a biopsy. On return visit were informed by Dr. Bell that it was "dysplasia" which is pre-cancerous. But as I have read everywhere it is in the 90 percentile that it will turn cancerous. So Dr. Bell said he would do laser surgery to remove it, surgery scheduled that day for February 12 at Providence Hospital in Portland, OR as that is where her insurance covered. Dr. Bell and another Fellow of his both spoke to Brandy's dad and I after surgery. They told us that they removed much more then they had planned or expected and that she was to put her prosthetic in when she woke up and wear it all the time, kind of a a bandaid to cover all the different areas that they cut from. Went home that day to start recovering.
Our first follow up visit with Dr. Bell was scheduled for 1 month after the surgery so it would have been around March 10 time frame. But even before then Brandy saw another place in her mouth that was red and then one that looked white as leukoplakia. Got in to see Dr. Bell right away when called, he biopsied the area. Brandy was still healing so he wanted us to return on our regularly scheduled follow up. Brandy had a lot more pain with the laser surgery then with the full surgery the first time around for the cancer and told Dr. Bell she didn't want to go through that again as it burned and hurt so bad. I could tell from Dr. Bell's demeanor that he didn't want to break the news that the results from the laser surgery samples sent for pathology and the newly biopsied area were all cancerous again. So double suck again.
So that pretty much fills in up to the past 6 weeks or so which have just seemed otherworldly at times. Dr. Bell said we need to schedule more major surgery, so you need to see the prosthedontist again, RO, MO, etc. Started jumping through the appointment loops. Were to return to see Dr. Bell but he called us in before next appointment and told Brandy and I that the tumor board after reviewing her case had decided that for her age and to give her a better QOL no surgery was to be done as it would be to invasive and disfiguring with how much more they would have to remove and they could no longer build a functional prostheses that would work. So where radiation and chemo were going to be a back up to the surgery now it was our hope for a cure.
When we met with Dr. Kee the RO the first time he was recommended by H&N surgeon as he was trained in H&N at Mayo clinic but again part of this multidisciplinary team that was expanding. This is where we are hearing that hard palate oral cancer is pretty rare that most oral cancers are seen in the soft palate or tissues of the tongue, lower mouth, throat, etc. as most of you are aware of on this site.
Dr. Kee the RO informed us on our first visit with him that 100% of his patients have surgery first that is the general protocol for oral cancer. He had just got off the phone with Dr. Bell an understood more about why they weren't doing surgery first, so reiterated again that the radiation tx was for a "cure". I'm not sure how I like hearing that word to much. A bit of mixed feelings. Again the list of appointments expanded to include having another CT scan, PetScan, see a geneticist (more later on that), dietician, etc. etc. First IMRT of 35 started on 3/30/2009.
Now when we saw the MO and he reviewed the case it changed our treatment from standard Cistplatin because that affects renal/kidneys and since Brandy already has only 50% kidney function it could cause kidney failure so going with the latest treatment of
Erbitux once a week during rad tx but start 1 week prior. So chemo
Erbitux started on 3/24/2009 for 7-8 weeks.
The RO after seeing and hearing some of her history wanted to look at genetics as an understanding if there was something that could be triggering the cancer. As I'm learning genetics is a whole lot of statistics and all that gene stuff, which I will never fully understand or do I think I want to. But it did show that for her she could possibly have "Franconi Anemia" or some other 1 in a million disease that I can't remember the name of. We jumped through some hoops though at OHSU labs for the blood test for the Franconi's as one of the main issues with Franconi's is when your blood cells are exposed to radiation then the cells would split and it could just start multiplying the cancer. So with the planned treatment it wouldn't be good. The PetScan was another big one for me as those of you that know if the cancer had spread elsewhere we were told they would not do the radiation at all. I have to assume until I know/ask further that this is for Brandy's particular case.
So had all the scheduled appointments within two weeks after weeking RO. PetScan was negative and clean except for the areas we knew in the upper right maxillary regions. BIG Woohoo on that one, I had a celebration drink that night. Also, the genetics testing for Franconi's came back negative which was also good. They do want to do some further follow up in this genetics area but said to wait until Brandy is done with her current treatments and healing, we'll come back to that later.
So as you saw earlier we are now into our second fight with this ugly, barbaric disease as I have read it referred to on this site. I feel so much for people that have to face and fight this ugly cancer disease in any manner.
We are two weeks or 10 treatments into our 35 and I am amazed at Brandy's attitude, staying very positive to fight this and has to smack me once in a while, but this hits so hard sometimes. And being a mother and a caregiver as Brandy is not married and has no one significant right now I'm it and anyone that's a mother will understand. We hate to see our children suffer.
Also, on the first day of radiation treatments Brandy came out of her session and looked at me and said that she thought Dr. Kee RO wanted to talk to us as he had "that look" on this face. And he did walk out and ask to see us. This is the first time we have seen the RO since our initial visit. He asks a few
questions about how she is and does a visual exam of her mouth. He sits back down looks us in the eyes and says "I'm extremely worried", well that will take the breath away from you. Really scared me which upset Brandy. Ahh well we all react differently. The tumors are continuing to grow and are now invading the front buccal buckle which was removed in the first surgery. RO says we will continue with treatment for a week or so and reassess but also informed us that he will be altering her IMRT treatments to include the front lip area which will also speed up the side affects and most likely mean having a PEG sooner rather then later. He stated that he needed to see no further growth at all or we will go back to massively invasive surgery.
Now we're two weeks down, saw RO on Thursday of this week 4/9/09 as Brandy saw some new patches in her mouth and wanted him to look. Glad to hear they were not new occurances but just the mouth sores from radiation to be expected. But he also did not see any shrinkage either which he didn't like. But we will continue on with treatments for now.
So I guess this is not the beginning or the end but someplace in between in our lives of living with cancer. Now that I've got this far I hope to keep this up as my way of putting down my feelings and coping with this role again.
God bless and thanks for the support that I know is there with other warriors against this fight.
Bonnie
