Living with post cancer illness and general health problems. Are You?

I would like to add that my initial surgery was by the transplant team at Mayo, best hospital I have ever been to, and I have been in a lot of hospitals.

Hello @sucante. I'm rolling up my sleeves. 🙂
Welcome to Mayo Clinic Connect community. Here you will meet other people who have "been there" and are here sharing their medical story and experiences. Our hope is that you find relations similar to your own and receive benefit from reading, sharing and knowing that future members will benefit from reading about your experience as well. I find the connect community to be real, helpful, open and honest, and just a great place for everyone.

Just recently I was wondering if starting a topic thread on anxiety, post cancer would be helpful to others? I have encountered multiple people that have talked about anxiety post cancer journey and what surprised me most, was that the majority of those people feel alone and as if they shouldn't be anxious. 3 month visits, 6 months visits, 1 year visits....all ridden with anxiety and fear around 3 weeks before heading to the clinic for tests. How does a cancer survivor cope and deal with these feelings? I hope that others coming into this conversation will list what tips and tricks have helped them.

As far as the other concerns that you have mentioned here- I'm going to give you a few different group threads to check out and also some introductions to other members that will be helpful to reach out to.

Here is a link to the Diabetes group- https://connect.mayoclinic.org/group/diabetes-and-endocrine-problems/ Here you will meet members @twinskl @freemary @gman007 and @rosemarya (also a Transplant survivor) all whom have discussed chronic pancreatis as well as diabetes.

This link https://connect.mayoclinic.org/discussion/hashimotos-thyroiditis-229f9d/?utm_campaign=search will take you to the Endocrine group to discuss Hashimoto’s disease with fellow members @taterjoy @michellecrcrn @kyjeanne @dogmamat @sebley12 and @jillnc.

I'm also going to link the group Chronic pain here for you- https://connect.mayoclinic.org/discussion/welcome-please-introduce-yourself-welcome-to-the-new-chronic-pain-group-im/?pg=104#comment-71360

I hope this is a good start for you. Happy reading!

Hi Jamie. As a 9 year survivor of uterine sarcoma, I would definitely be interested in a group dealing with the many unknowns survivors face after treatment. I did not receive a plan of care after treatment, nor information about the late effects of treatment. I was simply told to follow up with my primary. I am currently relying on Mayo Clinic to address health conditions that are now popping up, as I found the general medical community doesn't appear to be able to address this issue.

@sarcomasurvivor

Your post regarding the quality of health following cancer treatment brings up some great ideas. First of all, I am glad that you are being followed up at Mayo, it sounds like you are pleased with your care there.

What health conditions are you finding to be the most troublesome since your cancer treatment?

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.

@rred How great that you have experienced such good care and are feeling better now. Thank you for sharing your story. It just proves that we can go through a great deal of problems and still live a good life!

@rred I appreciate getting a fuller picture of your journey with several cancers.

- Stage 4 Gastric Cancer https://connect.mayoclinic.org/discussion/stage-4-gastric-cancer/
- Anyone Caring For A Feeding Tube Patient? https://connect.mayoclinic.org/discussion/anyone-caring-for-a-feeding-tube-patient/
- Feeding tube removal https://connect.mayoclinic.org/discussion/feeding-tube-removal/

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.

Hi Teresa,
Mayo has been excellent throughout my post cancer journey, though I have yet not received any definitive answers about the issues that have cropped up after being relatively healthy for 7 years after sarcoma (surgery, chemo, radiation). 2015 50 pound unexplained weight loss. 2016: multiple digestive issues. 2017: peripheral double vision, nystagmus diagnosed as skew deviation but no cause. 2018: balance issues and peripheral neuropathy. All these symptoms continue with the recent addition of lower abdominal pain. Abdominal ultrasound by local provider today because of this recent development.

14 year pancreatic cancer survivor here! Diabetes is taking a toll. I feel like I’m just waiting for each stage of progression of the disease and treating it hind side.