topic This is our story. in Coping with a loved one's cancer

This is our story.

CC — Fri, 21 Nov 2014 02:27:38 GMT

My husband is 35. Yesterday (20/11/14) he was diagnosed with Oesophageal (or possibly Gastro-oesphageal Junction) cancer. He had a gastroscopy and biopsy yesterday, there is a 27mm tumour at the junction of his oesophagus and stomach, and some enlarged lymph nodes in the region. We get the biopsy results next Tuesday, and a PET scan next Friday. For it to be operable/treatable, it can't have spread. Please, God, don't let it have spread! We have a 5, 3 and 2 year old, and there is so much to live for. We're taking it one day at a time, but I'm feeling very impatient about the days between scans and appointments and results. My dad died from cancer when he was 49. I thought my family had done our quota of cancer...

Re: This is our story.

little_stitcher — Fri, 21 Nov 2014 07:45:17 GMT

Hi CC, this is such an overwhelming time. Most people on this forum would agree that waiting for test results absolutely SUCKS!!!! I'm really glad you found this forum so early in the piece- it's a great place to vent/share ideas/ask questions and just generally be heard by people who understand what you're talking about. Unfortunately you'll probably find that there aren't a heap of resources directed specifically towards your (our- I'm 38, my husband is 42 and he was diagnosed 3 years ago) demographic. The Warwick Cancer Foundation is a group founded to support people dealing with cancer aged 25-40ish. www.twcf.org.au. They have a peer support program, provide practical help and have social functions for members and supporters. I'm sending warm hugs and good thoughts your way. love Emily

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CC — Wed, 26 Nov 2014 03:06:38 GMT

Hi Emily Thanks for your reply. I will look into the Warwick group, it sounds like we're in the bermuda triangle of cancer. Both a good and a bad thing, I guess. o_o We've had an update from the surgeon yesterday... it's definitely adenocarcinoma, which we expected. The PET is on Friday and we'll have those results next Tuesday. If it hasn't spread he'll have chemo, full gastric resection and more chemo (so, standard treatment). If it has spread... well, trying not to think about it. Have you got a family member/friend with cancer, Emily? Or have you been diagnosed yourself? CC

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CC — Wed, 26 Nov 2014 03:06:49 GMT

Re: This is our story.

CC — Wed, 26 Nov 2014 03:07:27 GMT

Re: This is our story.

little_stitcher — Wed, 26 Nov 2014 07:12:53 GMT

Hi CC, my husband was diagnosed with stage 4 non-Hodgkin's lymphoma in 2011. He was 39, I was 35 (I probably should have told you that earlier, to give you a context for my post!) He had 6 months of chemotherapy and thankfully went into remission half way through. He's been doing brilliantly since then, and is currently on 6 monthly check ups. Good luck with the PET. I've got everything crossed for you! love Emily

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Kathyhtak — Mon, 01 Dec 2014 12:12:02 GMT

Hi CC, I am sorry to hear about your husband's diagnosis. I know how devastating and terrifying such a diagnosis is. I was diagnosed with metastatic oesophageal cancer in late January 2013 at age 49. Mine is adenocarcinoma, the primary tumor at the oesophagus/stomach junction and it has spread to my liver. No surgery for me as I am Stage IV. I have been on chemo since February 2013. All tumors have shrunk and I am doing very well. I hope that you have good news from the recent scans and that your husband's cancer has not spread. Best wishes for you, your husband and family. Kathy

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CC — Thu, 04 Dec 2014 22:55:55 GMT

Thank you ladies. It's not good news. It has spread to his liver, and although the medical teams will be giving him radiotherapy and probably chemo, they've suggested a timeframe of anywhere from a few months to two years. Inoperable. I am hollow. He is in a lot of pain, and upping the dose of morphine/endone every few days. It is scary how sick he is getting. Three weeks ago he just had heartburn! I keep looking at our children and I just feel hollow. I am finding comfort and hope in my bible and prayer, and w're not lying down to just accept, but it seems to be progressing so quickly. I am trying to strike fear from my heart but the journey ahead is so surreal. I just can't even process it.

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CC — Thu, 04 Dec 2014 22:59:21 GMT

Wow, Kathy, similar journey. Sorry, I didn't see your post when I replied to the thread. Do you mind if I ask what your original prognosis was? Brett is stage III or IV, and for the sake of our littles, and for him, (and me) I am praying that he too can still be here 18+ months on from diagnosis, and beyond! How was your pain to start with, earlier in the journey?

Re: This is our story.

little_stitcher — Fri, 05 Dec 2014 07:09:43 GMT

I'm so sorry. I know there are no words for a time like this. I'm a Christian too, and I'll be praying for you all. Please message me if you would like to share any prayer points. lots of love and hugs, Emily

Re: This is our story.

Kathyhtak — Sat, 06 Dec 2014 07:25:37 GMT

Hi again CC, I'm sorry to hear that Brett's cancer has spread to his liver. When I found out that I could not have surgery I was devastated. I thought I would be dead almost immediately. Chemotherapy was my only chance to buy a bit more time. (I was not offered radiation.) My oncologist told me that there was a 60% chance that chemotherapy would be effective and that I had a 40% chance of living 12 months past diagnosis. He was not more specific than that. At time of diagnosis I had very little pain, just vague aching around liver, and only needed the occasional panadol. Worse for me was the oesophageal discomfort, choking and bringing up whatever I tried to eat. Brett's pain sounds really bad - where is he feeling the pain, do you know what is causing it? Everyone has a different cancer and treatment experience. I was fortunate that the chemo worked for me, and quickly - I was able to eat a couple of weeks later. I hope that Brett's treatment is just as effective and that you have positive results soon. I think that being young is an advantage. My initial chemo was tough going and I am thankful for the support, encouragement - and sometimes nagging! - of my partner, I could not have done it without him. Cancer is hard on partners and families, so look after yourself too. I am thinking of you both and wish you all the best. Rather than say 'be positive' which frankly sometimes is impossible, I will say 'be determined'. I am happy to answer any questions you have about my cancer journey. Kathy

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Ros_ — Sat, 20 Dec 2014 11:23:06 GMT

Hi CC, I'm sorry that Brett's cancer has spread. I'd just like to say that I have stage4 oesophageal cancer with lung and adrenal gland mets. It has been 15 months since my diagnosis and I've had 2 courses of chemo. The first chemo was very effective but also very tough. The second (current and a few months later) is much gentler, I'm used to it now and my quality of life is fantastic. I really am living normally. You wouldn't know I had this illness unless I told you or my snazzy hairstyle gave it away. Managing the side effects is important and you have to tell the medical team so they can help you. I do feel tired from the chemo and have decided not to work. I eat well too. I've some nerve pain but meds like lyrica are very effective. Please look after yourself too. I know how much I relied on my husband in the early days and he had to deal with a lot of emotional turmoil from me. I don't think I ever asked him how he was. We are in a much better place now. Oh, I'm older, 48.

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Thu, 25 Dec 2014 10:17:01 GMT

CC My husband too has oesophageal cancer, diagnosed in January . I'm new to the forum and wish to connect to other wives/carers. We have 2 children 16 and 20. My husband has had chemo, radio therapy and recently a stent inserted into his oesophegus.

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Cathyedu — Mon, 21 Jan 2019 11:31:12 GMT

I felt much the same as you when my husband was diagnosed with the same disease. He had a nasal feeding tube for four and a half months, radio/chemo and he had his esophagus surgery 1.5 wks ago. The waiting is horrible. now we are on the other side of surgery, its still hard as recovery will take a while.

My hubby joined the volunteer physio session at FSH which was great!! and recommend you enquire about it at the hospital, as your hubbys fitness will be considered for a surgery date.

He built up ready for the op, stayed positive and went through each step at a time.

Post surgery his outlook is good and sometime soon I will have my man back to normal, bossing me around. They can cure or manage it for a very long time.

Once treatment has finished, you will be amazed how well he is.

Wishing you a bright future xxxx

Re: This is our story.

CC — Mon, 21 Jan 2019 11:54:03 GMT

Cathyedu thank you for your reply, I am uplifted by your positive story (if a cancer experience can be such a thing?!).

Unfortunately for us, our story wasn’t one of the good ones. Brett died on January 17, 2015, 42 days after his diagnosis. Our children were 2, 3 and 5. Our oldest child started primary school just 9 days after his funeral. He was 35.

I like to think that Brett’s death at such a young age was to spare others, it’s just a belief I have, and so, with that in mind, I do believe your husband will be bossing you around very soon, and I look forward to hearing about it when he does!

Ours wasnt a good outcome, but I pray that yours will be. 💛

Cath x

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a911lass — Sun, 03 Mar 2019 10:49:16 GMT

My husband was diagnosed with esophegeal cancer stage 3/4 a year ago. We now have 11 folfox chemo treatments and 5 immunotherapy fusions under our belt, and have a pet scan next week. Not many people have this type of cancer, it is hard for me to find others who are dealing with it. Right now my main focus is chemo anger.....my husband is starting to become physical with me...and I am concerned. Anyone want a pen pal?? I am 66 but very young at heart.....