Tuesday, May 7, 2019

Brandon's cancer update

Thank you to everyone for your love, prayers and support the last few weeks.  Brandon has made an amazing recovery considering this was a major surgery involving his stomach and they removed a very large portion of his abdomen.  In fact he is acting like he feels better than he has in a long time.  I am trying to keep him from doing too much and not to damage the surgery site.  We have three more weeks before he will be all clear for normal activity.  He is taking no pain medicine and the site itself is healing very well.  Today Brandon's only question was when are you taking out the sutures which they did today.  The other question was when can I take a bath again.  For Brandon that means he is back to being independent and not having his mom help him every night in the shower.

Today we went back to MD Anderson for our second post operative visit, this one with Dr Ross Brandon's main surgeon.  We received the final pathology report back from MD Anderson and as expected, good news from the report.
  • The report confirmed removal of the cancerous tumor with the main tumor the size of 4.3 cm.  That is a large squamous cell carcinoma tumor.  
  • The report also confirmed that the tumor spread to the abdominal wall and into the stomach.
  • The report confirmed that the tumor is well to moderately differentiated so it hasn't spread too far from the original tumor.  
  • The report also stated that all margins were clear of cancer.  Therefore they removed all cancer they were able to identify and had clear edges all around the cancer. 
  • They did not find perineural invasion.  Therefore they are not seeing cancer in the nerves. 
  • They did not find cancer in the lymph nodes.
  •  The cancer was very deep.
At the visit today Dr. Ross confirmed the diagnosis of Marjolin's ulcer.  A form of squamous cell carcinoma.   I have been trying to do as much reading in my spare time to learn about this type of cancer.  A few things I have found.  No one seems to know why this kind of cancer forms.  It is 3 times more likely to impact males rather than females.  This type of squamous cell carcinoma accounts for .05% of all squamous cell carcinoma so therefore it is fairly rare. It likes to attach to scars, burns, sites that have chronic infections and can form over 1 to 30 years before someone diagnoses the cancer.  The description of the cancer matches perfectly with Brandon's such as excessive granulation tissue, bleeding, rapid increase in size, foul smell and crusting over. I realized after cleaning out the medicine cabinet that there was a tube of an antibiotic prescribed over 10 years ago.  So I can say that Brandon has had an infection for over 10 years on and off.  I also found that the rate of return within the first year is around 30% for Brandon's severity and prognosis is much higher if Brandon does not have a reoccurrence within 2 to 3 years.  The treatment for Marjolin's ulcer is exactly what MD Anderson did - surgery. 

After surgery, there are several options.  If the cancer has spread, gone into the lymph nodes or other organs or is large then radiation and chemotherapy  may be recommended.  But only based on the level of risk.  In Brandon's case we were referred for radiation therapy.  The reason is because of the size of the tumor which was large and because of the depth of the tumor which went into the abdominal wall and the stomach.  But Brandon has other risks unrelated to the cancer.  If he were to have radiation therapy they would want to do external radiation therapy for 6 weeks every day for 15 minutes.  Brandon would have to be sedated for each treatment.  Because he is only 26 there is also some risk for cancer in the future from the radiation.  There is also some risk for the area where radiation is targeted within the abdominal wall.  The other important fact I found in the literature and the doctors confirmed is that use of radiation doesn't necessarily improve prognosis for this type of cancer.  After discussion with both doctors we agree today to NOT move forward with radiation treatment.  Rather we will wait until the next cancer check.  If the cancer has reoccurred in 6 months they will remove the area and we can discuss radiation options again at that time.  

I have been reading with extreme interest concerning the book I posted on the last blog "Anti Cancer."  During this 6 month period I will change Brandon's diet to closely align with recommendations in the book.  This is fairly easy for Brandon because most of his nutrition comes from smoothies.  If you add chocolate to the smoothie he is good with it.  If you haven't had a chance to read this I would say it is a must read for any cancer patient and survivor.  

Brandon's integral medicine doctor found a good supplement with 10 years of research that has a positive impact on this kind of cancer.  We will be adding Afaya.  We recevied the okay to begin using this today.  The positive outcomes from using turmeric is not new.  Afaya combines with other supplements. Here is a link to an article on Afaya.   (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6093880/pdf/41598_2018_Article_29683.pdf) 

So for now, all is good.  Brandon is feeling great and within a week he will be independent again.  A sigh of relief for now.  Going to let go of this cancer thang for now and have some quality time.  Brandon taught me a lesson, he focused on his band, his gig and getting his independence back.  He told me that I can make the decisions on the rest of it.  I continue to be wowed at how amazingly well Brandon handles each major life event focused on those things important to him. On the way home all he talked about is what songs he wants the band to play, hearing the details of his next "gig" with the band (and for Phil) and the listing of all the songs (Beatles) he wants to learn during a 3 hour drive home.  Glad to be home.





More later.
Leah