Esophageal Cancer: Anyone else?

Posted by puprluvr @puprluvr, Jan 29, 2019

I’ve completed 15 chemo treatments and 1/25 proton radiation treatments for my stage 2 esophageal cancer. I’m jst looking for helpful advice from anyone going thru this past or present. I’m a bit frightened wondering how this treatment will affect me.

Interested in more discussions like this? Go to the Esophageal Cancer group.

@amandaa

Hi @patricia1952 and welcome to Mayo Clinic Connect.
I moved your post to this discussion:
– Esophageal Cancer: Anyone else? https://connect.mayoclinic.org/discussion/esophageal-cancer-2/
I did this so that you could meet more people with similar situations.

When did this happen?

Jump to this post

This all happened a few weeks ago. Going into Cancer center for Simulation today . Waiting for definite biopsy results but all the cancer doctors agree its Stage 3 esophageal cancer . Just need advice and suggestions. I'm 70 years old with liver cirrhosis and low platelet count so scared about if the radiation and chemo is going to work and be worth it ?

REPLY
@patricia1952

This all happened a few weeks ago. Going into Cancer center for Simulation today . Waiting for definite biopsy results but all the cancer doctors agree its Stage 3 esophageal cancer . Just need advice and suggestions. I'm 70 years old with liver cirrhosis and low platelet count so scared about if the radiation and chemo is going to work and be worth it ?

Jump to this post

Hi Patricia, I'm tagging some other members who have experience with esophageal cancer like @puprluvr @dtaylor75 @slisa729 @rexsan20 @survivorsuz @pellaw @yinouye @advocatepaul. I'm hoping they can share their tips and experiences with you, especially as you prepare for radiation treatment.

Patricia, how did the simulation appointment go earlier this week? As you like know the simulation is the longest appointment. The following radiation appointments will be much quicker. When do you start radiation? Will it be daily? Do you have far to travel to get to the cancer center for radiation?

REPLY
@patricia1952

This all happened a few weeks ago. Going into Cancer center for Simulation today . Waiting for definite biopsy results but all the cancer doctors agree its Stage 3 esophageal cancer . Just need advice and suggestions. I'm 70 years old with liver cirrhosis and low platelet count so scared about if the radiation and chemo is going to work and be worth it ?

Jump to this post

My husband was Stage 3 esophageal cancer. He did radiation and chemo prior to his Esophagectomy which was Aug 10 of last year. The robotic surgery went well. He was on a feeding tube for 6 weeks. It was a challenging road for him yet one year later he is enjoying his new normal which includes eating most everything in much smaller portions with some indigestion but no dumping or vomiting. He is 75, walks approximately 2 miles a day…some days are better than others. His outcome is better than many but that said he conquered prostate cancer the previous year and had a cancerous kidney removed in December…4 months after his esophagectomy. We truly believe we got a miracle. We are hopeful that you will be as fortunate.

REPLY

Hi Patricia,
My esophageal cancer was initially dognosed as stage 2 but my surgeon said if its in a lymph node-stage 3. I had one lymph node involved-my cancer was adenocarcinoma.
I had 5days a week for 5 weeks proton radiation and once a week for 5 weeks chemo.. the radiation shrunk the cancerous tumor so swallowing was better right away. The only side effects from the radiation was fatigue although it was gradual. I never got sick from the chemo as there were drugs to help with that.
I had surgery in April of 2019.
You're in the best Cancer treatment center in the world-don't give up-there is always hope. Hugs and prayers as you go through treatment. Barbara G

REPLY
@colleenyoung

Hi Patricia, I'm tagging some other members who have experience with esophageal cancer like @puprluvr @dtaylor75 @slisa729 @rexsan20 @survivorsuz @pellaw @yinouye @advocatepaul. I'm hoping they can share their tips and experiences with you, especially as you prepare for radiation treatment.

Patricia, how did the simulation appointment go earlier this week? As you like know the simulation is the longest appointment. The following radiation appointments will be much quicker. When do you start radiation? Will it be daily? Do you have far to travel to get to the cancer center for radiation?

Jump to this post

My husband has esophageal cancer in the lower 3rd of his esophagus. He just underwent chemo and radiation in March/April. He’s 58 and in relatively good health. It was very hard on him. He has trouble swallowing so he suffered from dehydration/malnutrition and wa hospitalized twice. The second time they inserted a feeding tube and it has been incredibly helpful!
He has an esophagectomy a week from today. His petscan from last week showed the cancer REALLY responded to treatment. It was hard road but worth the nausea, tiredness and sickness.
Be sure to do ALL you can to stay hydrated and don’t hesitate on getting a feeding tube. Makes all the difference!

REPLY
@colleenyoung

Hi Patricia, I'm tagging some other members who have experience with esophageal cancer like @puprluvr @dtaylor75 @slisa729 @rexsan20 @survivorsuz @pellaw @yinouye @advocatepaul. I'm hoping they can share their tips and experiences with you, especially as you prepare for radiation treatment.

Patricia, how did the simulation appointment go earlier this week? As you like know the simulation is the longest appointment. The following radiation appointments will be much quicker. When do you start radiation? Will it be daily? Do you have far to travel to get to the cancer center for radiation?

Jump to this post

Hi colleen I go to radiation 5 days a week I start on August 1st I'm going
for radiation at hackettstown medical center I thought the Simulation was
the easiest part how far along are you with your treatments sorry for not
replying sooner if you don't mind how old are you hope everything is well
talk soon Patricia

REPLY
@colleenyoung

Hi Patricia, I'm tagging some other members who have experience with esophageal cancer like @puprluvr @dtaylor75 @slisa729 @rexsan20 @survivorsuz @pellaw @yinouye @advocatepaul. I'm hoping they can share their tips and experiences with you, especially as you prepare for radiation treatment.

Patricia, how did the simulation appointment go earlier this week? As you like know the simulation is the longest appointment. The following radiation appointments will be much quicker. When do you start radiation? Will it be daily? Do you have far to travel to get to the cancer center for radiation?

Jump to this post

Hi colleen my radiation starts August 1st I go for treatment 5 days a week I thought Simulation was the easiest part how are you doing

REPLY

Prior to proton radiation the previous radiation treatment at Mayo and most other locations worldwide the radiation would cook surrounding areas around the tumor. Ten years ago 60% of my stomach and 90% of my esophagus were surgically removed after radiation. My average life expectancy was five years. I'm cancer free after ten years and living an almost normal life. As long as I adhere to the lessons I learned I am fine. Many adjustments to everyday life activities had to be discovered, learned, and practiced. Trust your Mayo team for all of your clinical treatment issues and keep on asking questions about any issue regarding your treatment and cure.
Your living environment at home will need to be adapted to what your body needs after radiation and if you have surgery or not. The food you eat, how you eat it, the bed you sleep in, what type and the physical design, and other considerations can be tried and adapted to make your life seem very normal.

REPLY
@colleenyoung

Hi Patricia, I'm tagging some other members who have experience with esophageal cancer like @puprluvr @dtaylor75 @slisa729 @rexsan20 @survivorsuz @pellaw @yinouye @advocatepaul. I'm hoping they can share their tips and experiences with you, especially as you prepare for radiation treatment.

Patricia, how did the simulation appointment go earlier this week? As you like know the simulation is the longest appointment. The following radiation appointments will be much quicker. When do you start radiation? Will it be daily? Do you have far to travel to get to the cancer center for radiation?

Jump to this post

Hello Patricia:
I was diagnosed with stage III esophageal cancer in early 2019. I had chemo therapy and radiation prior to my minimally invasive esophagectomy (July 2019). The first few months were challenging with an infection at the feeding tube site but after that was finally removed I progressed well.
The recovery is a slow progression but it does get better every week. Remember to keep your stamina up be walking on a flat area like a parking lot. My husband would go with me to a large office park and getting outside to hear and watch the birds, squirrels, etc. was a good way to walk further than I originally planned.
Eating something every hour or so is important. Remember to chew, chew, chew before swallowing to give your digestion help & avoid dumping syndrome. I found very cold foods and liquids were not compatible with my digestion so I drank tap water and avoided ice cream for a few months but can enjoy eating a bowl now.
Also, I had difficulty with sweets causing me stomach cramps so read the contents of packages and I keep a serving at or below 12 g and that seems to be a good limit for me. Over the years I can gradually increase it.
So here it is three years post surgery and I can eat a little larger portions, gained back 10 lbs. (I still need to gain another 10), enjoy going out with friends & family and have a positive outlook that I have a lot of life ahead.
Work closely with a dietician to find a plan that is tailored specifically to you. Everyone has different reactions to some foods so give some alternatives a try. I did well with Carnation Instant Breakfast (light start has less sugar) mixed with milk but other people like readymade Boost or ensure drinks. I also found a yogurt brand of :Ratio that has 25 g of protein so it's a great snack that is easy to digest.
Reaching out for support is a great connection to find others that have had a similar journey. It certainly helped me put things into perspective on how long the recovery process is.
Good luck!

REPLY

Hi Suz, were you diagnosed with Barretts early on?

REPLY
Please sign in or register to post a reply.