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Journey of Understanding Daily Life with esophagus cancer

Hi, I'm Lisa O ;-)

I’m about to start treatment for cancer of the esophagus. Radiation/Chemo. New experience/new journey for me. Additionally, it is planned that I will be treated for Laryngeal Cancer down the road. Not sure what to expect. 2 Cancers, one person….but dealing with one cancer at a time. Otherwise I’d be doing the tango with incredible overload of overwhelmingness.

I have a very compassionate and understanding medical team…and if you have any input/thoughts/etc to share…I’d appreciate it if you shared them with me and all who may read this discussion — so that I’m not feeling alone and operating in a secluded space in my head! Many thanks iin advance! And best regards!

Lisa O

  • Post #1
  • Fri Mar 3, 2017
I'm Jane S., and I'm a survivor of Stage 3 Metastatic Squamous Neck Cancer

I have just completed treatment for tonsil cancer. I’m not going to lie and say it was easy – it wasn’t. I am glad you are reaching out to others, I felt very isolated. Head and neck cancer/treatment is very different to other types and you need to talk to someone who has gone through it. I had great difficulty connecting with anyone, mainly because when I needed to talk, I was too sick to go on line and find anyone.
If you have a good medical team, I’m sure they have covered all the necessary pre treatment appointments – I would advise pushing for speech therapy PRE treatment and also if you don’t have a relationship with a dentist – find a good one now. You will need the dental care for the rest of your life
Good luck, and ask me any question you may have

Jane S

  • Post #2
  • Sun Mar 5, 2017
Hi, I'm Lisa O ;-)

Thank you for that information…it is most helpful/important to me to touch base / be in contact with someone who has/is gone/going through what similar journeys. I realize each journey is different but the overall nature is the same. Dental was something I didn’t give much consideration…so I appreciate the heads up on that! That will require action on my part…thank you!

Nervous, scared but all in all…it is what it is and I’m in good hands both medically and spiritually. Emotionally I get a little wacked out when I think about it too much…hense, trying to be rational and objective about it.

Right now I don’t have any questions — any specific questions but I start my treatment on Tuesday. I am sure things will come up that I don’t know to think about yet….and I appreciate your time and consideration in offering additional information. Many thanks in advance for your information and wishes. Wishisng you the very best as well…and again, thank you! I will keep you posted and send questions as they pop up. Many Thanks Jane!!!

  • Post #3
  • Mon Mar 6, 2017
I'm JohnnieGirl, and I'm a survivor of Stage 4 Oropharyngeal Cancer

Hey Lisa,

I just had a conversation with my one of my cousins about how important it is to find someone to connect with when you’re going through this. At the age of 45, I had a tumor found in 01/21/15 that was diagnosed as a stage IVb nasopharyngeal carcinoma on 06/05/15. It was inoperable so they hit it with chemo (cisplatin) and 33 rounds of radiation. I had a metastasis to my brain that was found in November 2015 and treated with gamma knife. The original tumor is gone and the brain tumor looked like scar tissue at my last MRI in December (I’m due for another at the end of the month).

I’m so glad you have a great team! I agree with Jane about seeing the dentist and strongly recommend doing it NOW so you can protect and preserve your teeth. Speech therapy was super critical for me as was seeing a nutritionist and physical therapist. My weight loss would have been catastrophic if I had not been really heavy before starting treatment. I really relied on my Nutribullet to get what I could eat in my body with the least amount of pain (frozen fruit and protein powder or Powerade slushies were all I could tolerate after a while.

Be upfront and honest with your team to let them know anything that you’re experiencing so they can help you manage it (pain, anxiety, side effects, whatever).

You’ll have a “new normal” after treatment thanks to the physical and emotional consequences of cancer and treatment. That’s been my biggest struggle but also my unexpected blessing in all of this. My faith was strengthened and grew exponentially through all of this and I honestly don’t know if that would have happened without cancer.

Please reach out if you get to feeling isolated, alone, afraid or overwhelmed. This is a tough row to hoe but your faith can and will sustain you, come what may.

Johnnie T

  • Post #4
  • Tue Mar 7, 2017
Hi, I'm Lisa O ;-)

Thank you Johnnie T. Thanks for responding. Faith is helping me through this…without it I don’t think I’d make it. I appreciate the concern expressed and I thank you for responding. It is scarey but I’m not alone knowing that other people feel the same way I do. Thank you for sharing!

Lisa O

  • Post #5
  • Fri Apr 7, 2017
Hi, I'm John K G.
I went through tongue cancer in 2010 and esophageal cancer in 2016. It’s no picnic and I do wonder whether the chemo is worth the bother. I had cisplatin, Folfax regime and a few other chemo drugs. They knock you down and I finally quit both sessions early. I have had a total of 65 radiations to my throat and tongue. One would think all that chemo would kill any cancer cells in your body, BUT they do not. I complete my last radiation treatment in Oct 2016, had a clear scan CT in April 14,2017. Moved to Florida May 28, 2017 and ended up having my gall bladder become inflamed due to gall stone on May 12 and had it removed 12 hours later. It was dissected and found to have cancer in it. Lucky it just happened before the cancer spread and was caused by the stone. Are you counting? That’s 3 cancers now! When I had my first cancer in 2010 I also had kidney cancer which they hid from me because if my tongue cancer wasn’t cured I would have died. I had 2 different cancers on my kidney and had it removed. That’s 5 cancers for me and going in June 30th form 13th dilation of my throat. It seems I’m prone to cancer. When I was diagnosed it went over my head. No panic or crying. Leave it up to good Dr.s and always question what they are doing. “cagy2@yahoo.com”
  • Post #6
  • Wed Jun 28, 2017
Hi, I'm Frisky88

HI everyone, I was diagnosed with neck and tonsil cancer in March 2017.
I had two surgeries and had a very difficult time recovering. Out of 14 weeks I spent 11 in the hospital. As a result I have just now begun chemo this week and start radiation next week. I have 7 weeks of
chemo one day a week and 7 weeks of radiation 5 days a week. So far the worst part was being fitted for the helmet to wear during radiation. I am terribly claustrophobic so I asked for something to help me relax during the sessions.

I agree, find a good dentist and rely heavily on your faith, you will need it.
Also my friends and family have been wonderful about helping me. I find it hard to ask for help, but they didn’t wait for me to ask, they just jumped right in.

I am glad there is a community like this because I was feeling very lonely
so it was very comforting to find this.

Please keep writing.

Frisky88

  • Post #7
  • Wed Jun 28, 2017
Hi, I'm Mrs T

There is info that Cancer may be pathogenic… so we (my DH had Esophageal Cancer, with removal & one round of Chemo), try to eat natural foods that are anti-biotic, anti-viral: garlic, onion, cilantro as much as is possible, plus I take Red Marine Algae Plus supplement. We also take a good pro-biotic daily – as 80% of our Immune Function is in our ‘gut’! My DH unfortunately lost 4 teeth recently – no one mentioned they could be disaffected by Chemo! OY! But at least he’s a MIRACLE – 3 PET Scans = Clear! Keep hope!

  • Post #8
  • Mon Mar 12, 2018

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