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Newly diagnosed with Esophageal Cancer

Newly diagnosed with Esophageal Cancer

Posted by Werwer2020 on Feb 14, 2020 8:31 pm

Well a week and a half ago I was diagnosed with esophageal cancer and boy does t hat knock the wind out of you. Now I'm told I have a lot of tests that have to be done before I will even know what treatment will need to be done. So the way it looks now it will be early in March. Boy this not knowing sure can take a toll on a person.

Re: Newly diagnosed with Esophageal Cancer

Posted by Brighty on Feb 14, 2020 9:04 pm

Werwer2020‍  welcome to cancer connection !  I'm glad you reached out to us.     I'm so very sorry for your diagnoses.    I want you to know we are here for you.   Waiting  is rough....do you have  any hobbies  you like to do for a disraction while you wait?  My fiance  had esophgeal  cancer so any questions  you have please know I'm beside you every step.     Let us know when you get more information.       We are here to be your support system.    
Help is out there. All you have to do is reach out.

Re: Newly diagnosed with Esophageal Cancer

Posted by Kims1961 on Feb 14, 2020 11:57 pm

Werwer2020‍  I see that Brighty‍ has already connected with you!   You are so right...the not knowing - limbo is what i called it - was one of the toughest parts of this cancer journey.

When i was diagnosed with breast cancer in 2017 - I had surgery first which meant i didn't meet with an oncologist until 3 months later.  The toughest 3 months ever !!  I found keeping myself busy - distracted during that time really helpful.  Things like cleaning our that junk drawer, the closests, going out for walks - anything that could keep my body and brain moving , worked well.

You might also find it helpful to start a journal/notebook of your questions/ concerns etc. that you can bring with you to appts.  I'm also attaching a publication from the cancer society on esophageal cancer that you might find helpful.

http://www.cancer.ca/~/media/cancer.ca/CW/publications/Esophageal%20cancer%20UYD/32092-1-NO.pdf

So glad you posted.   Do you have any family/friends that are there to support you as well?

Take care, 
Kim
Her2+, ER+ Bilateral mastectomy in 2017, followed by chemo and radiation. Mack and Hannah's mom

Re: Newly diagnosed with Esophageal Cancer

Posted by Werwer2020 on Feb 15, 2020 12:28 pm

Thank you both for the quick reply. No I don't have any hobbies. But after talking to the nurse when I had my CT scan done I have started a Journal to keep track of all dates and other information I may need. I think that what concerns me the most is that the mass is pressing against my wind pipe and making it hard for me to breath. I'm almost at the point now where I am taking only liquids.  My Dr is trying to speed things along as quick as possible but there is still protocols that have to be followed. But he did manage to speed up my other two CT PET scans from the end of February to the 25th of this month, so that will help. Well all I can do is take one day at a time.

Re: Newly diagnosed with Esophageal Cancer

Posted by CDN Traveller on Feb 15, 2020 12:44 pm

Werwer2020‍  I’m sorry to hear of your diagnosis. You are in the right place to ask questions and receive great support from others with similar experiences in this group. I agree with you, this diagnosis stops you in your tracks and the waiting between appointments and tests is very difficult. Once you have more information and a treatment plan this will help knowing what to expect.

I received my initial dx this time last year and I remember very well the shock of the dx, and the anxiety of not knowing what was next. In my case it seemed like everything took two weeks - blood tests, CT scan & referral to the surgeon, additional CT/Pet scan, referral to the cancer treatment centre, then prep for and starting treatment, all took about 6 weeks. Keeping a journal and writing  down all your questions is an excellent suggestion, also taking someone with you to appointments to take notes. There are a lot of resources online but you need to be careful about which ones you look at. Kims1961‍ ‘s link below will be very helpful. The Sloan-Kettering institute (google) also has good information. A lot info online is outdated, so it is better to ask your oncologist for the latest info. There is a lot of info to absorb, try to take it in small chunks and focus on the relevant  phase of treatment you are in - ie dx and assessment, treatment, etc vs. all of the info at once. Each phase of treatment has a lot info associated with it -focus on one phase at a time.

There are also lots of helpful posts shared experiences and tips in this forum - see CaregiverCAL‍ ‘s post and others re prep for treatment, surgery and recovery. In my case I had 5 weeks of radiation and 5 cycles of chemo, and then an  Esophagectomy at the end of August. Although a challenging recovery, Six months post surgery I’m happy to report that my treatment and surgery were successful and my recovery is coming along very well. Feel free to ask questions.

Re: Newly diagnosed with Esophageal Cancer

Posted by CaregiverCAL on Feb 16, 2020 1:50 pm

Hi there, so glad you have reached out to this group.  I remember well when my husband was diagnosed the many questions we had and the support provided by this group to assist in getting structure to your journey.  We started out thinking we would have no intervention and deal with what came but the good folks at BCCancer took the time to explain what the path to a cure looked like and when we realized it was a cure they were after we got on board with it all.  We did take the time to chronicle the journey here for those after us to read about. I do hope our previous posts give you some insight into the process. 

please do not hesitate to ask any questions you may have. Getting the information you need is an important step to regaining control. 

CaregiverCAL Catherine