Two Primary Cancers Diagnosed at the same time, Cecum Cancer & Follicular Lymphoma

Ilovetotravel

The last few months I been dealing with Acid Reflex/ Gerd. I had an endoscope and colonoscopy by a local GI DR. He found the cause of the acid reflex (so he thought), H-Pylori that I had caught in some third world country. as a child.  (I have had gasritis for years.  I was just told to keep changing my eating habits. Eat like a bird basically.)  He also found a Pre-cancerous Polyp in my Cecum area of the colon at the site of my appendix opening. (They removed my appendix BTW at age 42. Dr. said aren't you a little old to get your appendix taken out? May have been a sign something was wrong woth the Cecum?)

The first Gi Dr. now referrs me to a second GI DR, who was to remove the polyp. He couldn't remove the precancerous polyp in my cecum. 2nd GI Dr. sent me to a surgeon.

I went to see the surgeon... I didn't trust the surgeon when he asked me, "how much of my colon did I want removed?" YES, he asked me that question? Should he take just the cecum, or if I want to be safe,  let him take about 6 inches to cover myself for cancer? Told me to go home and think about it.  I asked the question, if this is precancerous would it not be logical to order a CT scan?  (I did't trust the precancerous diagnosis. Even though I have  ZERO signs of anything colon related.) His answer of well you do not have any signs, so we don't order them. Only if you show symptons. I said well could it be possible the tissue sample taken by the second GI DR., missed the spot, as well as the first DR? He said yes, that is why I  might want to consider letting him  take 6 inches of my colon out?

I will be honest I thought his approach to having me decide how much he should remove was insane? I lost complete trust in the man. I am no medical Dr., nor do I have that much experience with cancer. My Mom died of cancer at 59 and I thought the DR she trusted was an idiot. He wasn't thorough. Maybe that is why I questioned my diagnosis? 

I called Mayo clinic as a self referral when the second GI DR a week earlier couldn't remove the polyp.  As I was leaving the surgeon's office,  Mayo called me back, I was lucky my appointment would be in 3 weeks.  

The GI DR. at mayo clinic confirmed that the polyp was cancerous and needed to be surgically removed. They are assuming stage 1 but a true stage cannot be determinned until they do my colon resection on next Monday.  

The surgeon at Mayo clinic ordered a CT scan of my chest, stomach, and pelvis area. The Ct scan showed a lymph node in my chest swollen. He said it was one of 3 things 1) nothing, 2) the colon cancer spread or a 3) secondary cancer? He then ordered a Pet Scan to be done.. The spot lit up in my chest. They seriously took me straight from the Pet scan to a CT Guided Biopsy of the lympth node in my chest.  

Sure enough I had a secondary cancer Follicular Lymphoma. ( I will admit it explained alot about the  small vague minor issues, I have had from time to time over the years. Itchy legs(dry skin I was told), my bloody noses (dry air so they claimed)  and blood sugar dropping (eat small frequent meals),alleric reactions to antibiotics, Folliculitis so the Dr's said. No DR's,  could ever give me a good reason for these minor issues I was having.   It even made me think of when I was a small child, my high white count and numerous Dr's my Mom would take me too. They found nothing.)  Obviously the real cause of acid reflex, although I am assuming. ( saw others post they had this with follicure Lymphoma).  I had taken antobiotics for the H-prylori . My stomach issues I was having are gone. But the acid reflex remained. The lympth nodes swollen are next to my aorta.  I will most likey need Chemo treatments? They gave this a stage 2.  I have this sense I will handle all the treatments well. I am not sure why? Something tells me not  to worry, that I am in good hands after going to Mayo Clinic.

I am pretty healthy otherwise. I walk about 5 to 6 miles a week. I was riding my bike and going to the gym before all this started back in September. I feel fine only issue is acid reflex. I been taking medcine for that which does help. I have really only had one bad vice in life, I have smoked on and off for years. I am not smoking now. So I don't have to stop doing that. I don't drink. So I am hoping that will make everything easier for me to handle?    

My Life will be changed forever now. So you know I am 53 yrs old. I will also admit I went into shock when I was first told, I hyperventilated a few times from crying.  But then as I was taking a couple mile walk this week.   This popped into my head. "You will be an inspiration for those who have been diagnosed with cancer. Stay strong and you will overcome it all. " 

I know I am very early in my Journey in the world of Cancer, but I have this feeling of peace over me, that it will all be OK and not to worry.  I shall keep youu all posted. And God Bless us all!

Ilovetotravel

Cecum surgery

yesterday I had the surgery to remove part of my small intestine and my large intestine. 12 inches all together.

it is another waiting game.. it takes five days to get the biopsy back.

staying strong and positive is all you have at this point.

the surgery  was not so bad minor pain today. Controlled with Tylenol. 

 

beaumontdave

The surgeon asking you what

The surgeon asking you what you wanted to do reminded me of mine asking the same thing, after pointing out the three liver mets in my first reoccurance. I was flabbergasted. The guy's a Hepatologist/Oncologist, head of the department, and he's asking what treatment I want? "I want the damn stuff out" was my answer. He should being pushing for the best course of treatment, not asking a layman what he feels like doing. Made me wonder if it mattered whatever they did. I got past the moment, but it still galls me to think of it....................Dave

Ilovetotravel

beaumontdave said:

The surgeon asking you what

The surgeon asking you what you wanted to do reminded me of mine asking the same thing, after pointing out the three liver mets in my first reoccurance. I was flabbergasted. The guy's a Hepatologist/Oncologist, head of the department, and he's asking what treatment I want? "I want the damn stuff out" was my answer. He should being pushing for the best course of treatment, not asking a layman what he feels like doing. Made me wonder if it mattered whatever they did. I got past the moment, but it still galls me to think of it....................Dave

I agree they should explain

I agree they should explain the whole medical situation. having people resort to reading a gazillion word definitions along us trying to figure out the best course for ourselves in insane.

13 yrs ago when my mom died of cancer. The university of Chicago hospitals also made you play the guessing game. However, there was one Doctor from England training American doctors how to do reconstructive bladder surgery.

well he was assigned to the team of Doctors working on my mom. The tumor she had was a mass with strands growing off of it. tHose strands were attaching to other organs. her colon and bladder. Well this English Dr. Pulled me off to side first, before her doctor could tell his side of what took place in the surgery room..They suppose to a reconstructive bladder surgery. She went back was all prepped for surgery and it was cancelled when the team of doctors had her on the operating table.

The English Surgeon said to me , "I overheard you talking to yours Mom Dr. And you are observant and sharp. The medical industry in the USA skirts around and wont say exactly what is going to take place. Your moms cancer is in the final stages, we were not able to do recruiting surgery. They are going to send you home with her and say  nothing about what is going to take place. i think is so wrong to   Not explain what happens in a case like this." 

Your Mom!s Bowel is going to burst and peritonitis will set in. She will need immediate treatment for that. You will have about 6 hours. If they do not do a surgery to clean her up. It will kill her.. You will tell this happened by her being in extreme pain. 

Well he was correct within about 48 hours sure enough that happened. i had to tell the doctors to pull her life support 3 days later. 

Now understand that my MOM refused all options such as chemo and radiation. Her last two years of life she opted to find doctor feel goods to prescribe her pain killers..That her decision and it was a horrible outcome I thought. 

Her dad did the same with his bladder cancer he died of. i will admit it was traumatizing for me to witness.

 

Now on my treatments I'm still waiting wondering what mayo clinic decides on for me. i am assuming after they biopsy what they removed from me on Monday. The medical team will come up with Plan. To be honest I will seek two more opinions. Just too see what they Recommend. I have a group of Dr's in Germany that offered to look over my medical case too.

i shall wish for the beat at this point.. Cause I still don't even feel sick at all..

Trubrit

Welcome to the forum.

I am glad that you have opened your own thread. 

I am so sorry to hear the story about your mum and granddad. I've known a couple of people who chose not to do treatment but live the best life until the end. Sadly, the end was very painful and traumatic for them and all around. But, everyone has to make their own decision.  

Your decision to seek second and third opinions is a great one, and I wish you all the best when you hear the results from this surgery. 

Take care of yourself. You sound wonderfully positive, which is a great healer. 

Sue - Trubrit

Ilovetotravel

3 weeks after surgery

Well it has been three weeks after surgery to remove the colon cancer.

There is much pain very minor and it has been this way since I was released from the hospital. I been able to control the pain with over the counter Tylenol. 2 -500ml 3 X times a day at first. Now I been taking the adoring twice a day. 

Now i see the body needs to get used to its new plumbing system. Have to watch everything you eat. Sighing. But I am happy I can drink a couple cups of coffee a day. Where before I couldn't drink any. Not sure if the h-pylori causeed it or what? cancer was bothering my coffee intake. But whatever it was, thank god it stopped.

The results from the colon cancer came back, they never told me a stage. The doctors said no further treatment would be needed for the colon cancer. They removed it all. Lymph nodes were not affected clean. I am assuming they got it all? 

Or do you still worry that it could possibly come back? 

Next week I meet with hematology regarding cancer number two. The colon doctor said it would be possible that I would be watched for the lymphoma? It was his thought cause I don't show symptoms ...but he said that will be up to the hematology dr. I am wishing that it will be a watch only on my lymphoma? 

After i go back to the doctor next week. I hope to be all cleared to hit the gym again. So I can start getting myself back into a heathly routine. 

We shall see.

God bless everyone

I will keep you all posted from time to time 

 

Trubrit

Ilovetotravel said:

3 weeks after surgery

Well it has been three weeks after surgery to remove the colon cancer.

There is much pain very minor and it has been this way since I was released from the hospital. I been able to control the pain with over the counter Tylenol. 2 -500ml 3 X times a day at first. Now I been taking the adoring twice a day. 

Now i see the body needs to get used to its new plumbing system. Have to watch everything you eat. Sighing. But I am happy I can drink a couple cups of coffee a day. Where before I couldn't drink any. Not sure if the h-pylori causeed it or what? cancer was bothering my coffee intake. But whatever it was, thank god it stopped.

The results from the colon cancer came back, they never told me a stage. The doctors said no further treatment would be needed for the colon cancer. They removed it all. Lymph nodes were not affected clean. I am assuming they got it all? 

Or do you still worry that it could possibly come back? 

Next week I meet with hematology regarding cancer number two. The colon doctor said it would be possible that I would be watched for the lymphoma? It was his thought cause I don't show symptoms ...but he said that will be up to the hematology dr. I am wishing that it will be a watch only on my lymphoma? 

After i go back to the doctor next week. I hope to be all cleared to hit the gym again. So I can start getting myself back into a heathly routine. 

We shall see.

God bless everyone

I will keep you all posted from time to time 

 

Get a stage

Ask what stage.  As a patient you are entitled to know. 

I am glad that there was no lymph involvment, good news. I'm sure your stage will be low, but I would still want to know what it is . 

And yes, there is always a chance of reuccurence. 

As for the coffee. I believe that our bodies talk to us, and if we listen, there is a possiblity that we can walk away from a whole heap of problems. If the coffee irritated the Cancer once, there is a chance it may do it again. I would think seriously about it. There are tons of healthier drinks out there. 

Good luck with your next step. I hope there is nothing to find and that you live onward a Cancer free life. 

Sue - Trubrit

Ilovetotravel

Trubrit said:

Get a stage

Ask what stage.  As a patient you are entitled to know. 

I am glad that there was no lymph involvment, good news. I'm sure your stage will be low, but I would still want to know what it is . 

And yes, there is always a chance of reuccurence. 

As for the coffee. I believe that our bodies talk to us, and if we listen, there is a possiblity that we can walk away from a whole heap of problems. If the coffee irritated the Cancer once, there is a chance it may do it again. I would think seriously about it. There are tons of healthier drinks out there. 

Good luck with your next step. I hope there is nothing to find and that you live onward a Cancer free life. 

Sue - Trubrit

I will ask what stage next

I will ask what stage next week when I go back for my four week checkup. 

I just really was relieved to know I didn't need anymore treatments for colon cancer. 

i agree I should know the stage.

Thank you   

Ilovetotravel

Ilovetotravel said:

I will ask what stage next

I will ask what stage next week when I go back for my four week checkup. 

I just really was relieved to know I didn't need anymore treatments for colon cancer. 

i agree I should know the stage.

Thank you   

One month post cancer diagnosis

Well saw my Doctors last week. All three of them. Colon surgeon, Genetics Doctor, and Hemetology Dr.

They all had good things to say. as a matter of fact they even thanked me for choosing them as my Doctors. I must now be part of some lab rat study. My guess. Never been thanked for going to a hospital. Actually thought I was hearing things.. Lol.. Even offered to start screening my kids as well.  

Makes  ya wonder should I be freaking out, or should I consider myself lucky? 

The colon surgeon said the cecum cancer was a straight stage 1, no involvement with any other body parts. I will be screened and watched  more often. No additional treatments. Just colon cancer screenings...

The Genetics dr needs to run a few more tests to nail down the Lynch Syndrome. Cause of the Follicular Lymphoma it makes it harder to verify, justvtaking blood samples. They need skin tissues along with the Blood work. I will return for further testing. 

The Hemotolgy Dr. Asked a million questions, checked my glands and said don't loose weight, and to call her if I get a fever that won't go away or I start having drenching night sweats. i have a very early stage follicular lymphoma. The cancer is very slow growing and all they will do is a watch and wait approach. They usually only have to treat  1 out of every 3 people with this type of cancer.  I will just require Ct scans every three months for the first year, then every six months second year, then once a year after that. 

I just can't party like a rock star any more... Need to eat heathly and exercise.. No Smoking or Drinking.. I think I can handle all that..