About

Member has chosen to not make this information public.

Groups (1)

Pages

Member not yet following any Pages.

Posts (4)

Sun, Feb 10 10:31am · Gastrectomy and bile reflux in Digestive Health

If TG means total gastrectomy then I had a similar issue as you regarding "wind" but my problem was its industrial strength not smell. My gastroenterologist suggested a probiotic–Align–and it worked.

Sep 23, 2018 · Living with post cancer illness and general health problems. Are You? in Cancer

I was very unhappy being tethered to a feeding tube. But, it was necessary. During the 3+months I was on a feeding tube I made several efforts to eat pieces of toast and suffered terrible pains in the back of my shoulder. These were diagnosed as referred pain. The first few times the tube detached from my abdomen I went to the ER where it was reinserted. After those occurrences I just shoved it back in myself. The tube did not cause physical pain, just mental anguish. After 3+ months I began eating simple solid food and progressed fairly quickly to regular food. I wasn't a healthy eater before cancer and I remain fond of not so healthy foods now. In other words, I eat what I like when I want to. (Mayo Clinic cafeterias are great in that they offer a good selection of interesting foods.)

I don't remember any issues regarding removal of feeding tube but my memory may be inaccurate since I would have accepted any issues just to be rid of the tube.

About my journey: I was diagnosed (incorrectly) by a Chandler gastroenterologist with a benign tumor in 2007. My internist urged me to have it removed but I took no action until I was in NYC in early 2008 when I suffered a gall bladder infection. The doctors in NY recommended surgery to remove my gall bladder and I agreed. During the surgery they determined that my "benign" tumor was cancerous–leiomyosarcoma. During this surgery I lost my spleen, one adrenal gland, part of my pancreas as well as the tumor. Surgeon left my gall bladder intact since that was the least of my problems.

I left NY Presbyterian Hospital after 10 days. A NY radiologist recommended radiation. Chemo was not suggested. I waited until I returned home (Chandler, AZ) to start radiation. After a consultation with a Mayo radiologist I agreed to delay radiation until the cancer recurred. It didn't so I never underwent any therapies following that surgery.

By the middle of July I resumed a basically normal life. I went to Disneyworld where I road all the roller coasters (I was the only adult willing to accompany younger folks on these rides). I started playing tennis again. I started quarterly CT scans.

In November of 2008 I was well enough to drive from Chandler, AZ to Denver. I stopped for the night in Albuquerque and that evening I began to suffer severe stomach pains which led to a 911 call and surgery to remove my gall bladder. I did not make it to Denver. My daughter met me in Albuquerque and drove me home to Chandler.

All things are relative and this surgery relative to my earlier surgery was no big deal.

For many years I suffered from gastric reflux and periodically had endosopies. During a routine endoscopy at the Mayo Clinic in Phoenix/Scottsdale in October 2010 I was diagnosed with early stomach cancer and almost immediately had a total gastrectomy. Following surgery I underwent radiation and chemo therapies. This was very debilitating. I suffered typical side-affects–loss of hair, skin problems, mental weariness, and industrial fatigue. I needed to lie down and rest after brushing my teeth. I also developed pulmonary emboli at the end of these therapies. A day at a time I recovered and in time returned to a normal diet. There were some severe digestive problems. Align probiotics took care of some and time the others.

I play tennis two to three times a week. I travel to Denver and NYC 7-8 times a year. I do CT scans yearly and as always they cause some anxiousness for a few days.

I was very, very fortunate. The body has an amazing ability to recover from traumas of the sort I suffered. I simply followed the directions of the Mayo doctors who treated me. I don't think of myself as being a very smart patient–I still don't know exactly where my retroperitinium is–that's where my leiomycsarcoma was. The smart, kind, caring doctors and staff at Mayo made my journey easier than would have been possible anywhere else. For that and the gift of survival I am very grateful. I will be 80 in October.

Sep 23, 2018 · Living with post cancer illness and general health problems. Are You? in Cancer

Hello @sucante
I don't know when your surgery was done, nor its extent. A leiomyosarcoma diagnosis (2008) caused me to lose my spleen, an adrenal gland, part of my pancreas and the tumor and nearby areas in my retroperitoneum. Recovery from this surgery was awful–for openers, I was on a feeding tube for 3+ months. I did not suffer noticeable post-surgery pain after a few weeks. My digestive system needed several months to improve.

Surgery was done in March 2008 and by November I felt well enough to drive from Phoenix to Denver for Thanksgiving. On the way I suffered a gall bladder infection and had my gall bladder removed in Albuquerque. Compared to my surgery earlier that year this was almost piece of cake.

In 2008 and 2009 I had CT scans every 3 months and then in October 2010 a routine endoscopy found early gastric cancer. I had a total gastrectomy within a couple of weeks. I then underwent chemo and radiation therapies. Pulmonary emboli were diagnosed and treated at the end of these therapies.
I was fortunate to not suffer great pain following surgery. Needless to say my digestive system was a mess. Now, 8 years later, it is no longer a mess. Not perfect but good enough. In the interim my CT scans went from quarterly to semi-annually to annually. I still get anxious about results the days before and until my doctor gives me his report. On the other hand, I play tennis three times a week, travel frequently to visit my grandsons in Denver and have been in pretty good shape for an almost 80 year old. I try to live one day at a time just putting one foot in front of the other.

I feel blessed to have survived what I've been through and very fortunate to have found the Mayo Clinic in Arizona.

I wish you a good recovery and hope that you find answers to your varied health concerns. Mayo is the best place for that.

Sep 6, 2018 · Diagnosed with sarcoma? Let's share in Cancer

I'm not sure that my response is relevant but I offer it anyway because I too was diagnosed and treated for a softball sized tumor diagnosed as third stage soft tissue leiomyosarcoma. My tumor was discovered in 2007 during a routine endoscopy. The gastroenterologist I followed up with in Chandler, AZ diagnosed the tumor as benign.

My internist wanted me to have the tumor removed. When I had gall bladder problems while visiting friends in NY in March, 2008 I scheduled surgery in NY to remove my gall bladder and tumor. During the surgery it was determinded that the tumor was not benign and in order to remove it from my retroperitoneum my surgeon had to remove one adrenal gland, my spleen, part of my pancreas as well as the tumor/leiomyosarcoma.

Recovery was slow–3 months on a feeding tube. I was referred to a radiation oncolgist in NY who suggested radiation. I wanted to get home as soon as possible and so I planned to follow up on radiation at the Mayo Clinic in Scottsdale, AZ. Monitoring my condition rather than radiation was the course recommended by Mayo radiation oncologist. I have had CT scans every 3 months for a year or so, then every 6 months and for the past several years annually. I have been very fortunate that the leiomyosarcoma has not recurred.

Later in 2008 my gall bladder (which was not removed during my first surgery) needed to be removed.

In November 2010, following an endoscopic exam, I was diagnosed with early stage gastric cancer and had a total gastrectomy following the diagnosis. Recovery from this surgery was easier than recovery from tumor removing surgery.
I will be 80 in October and just got back from Universal Studios in CA where I went with my young grandsons and family following a 10 day stay in Cooperstown, NY.

What I've learned from all this is to stay away from endoscopies (only joking). I wish you well.