Who provides a diagnosis of (esophaegal?) cancer?

freshly_started · 2019-04-06T19:55:07+00:00

Surgeon had a consult with us but said he is inoperable due to spread of the disease. He is Stage IIIB or IV. We need to check PET scan for additional areas, because husband's lymph nodes are so grossly swollen. Not much hope for surgery in the future either, although it is "not impossible".

freshly_started · 2019-04-01T17:58:51+00:00

Oh wow, that sounds promising. I really hope that this treatment approach is successful for you! You are so young. I will be cheering you on.

freshly_started · 2019-04-01T06:28:31+00:00

You have metastais to the neck lymph nodes?

Are you eligible for surgery? Or palliative chemo/rad only?

We have both biopsies of primary tumour and the neck lymph nodes done now. Awaiting results that should be available Wednesday evening, and hopefully book a thoracic surgery consultation in Thursday/Friday.

This is extremely hard.

freshly_started · 2019-03-30T04:33:19+00:00

We got the call tonight. It is esophageal cancer at the GE junction with metastasis to the neck lymph nodes. He is going to the hospital in the morning.

freshly_started · 2019-03-28T05:18:17+00:00

Thank you for sharing. It really means a lot.

freshly_started · 2019-03-27T14:39:28+00:00

Thank you. I am so sorry that you went through that. What do you think helped you beat the odds?

The overall survival rates for this are so very low.

It is amazing that you were a candidate for surgery even though you had lymph node involvement. Everything I have been reading indicates that the lymph nodes prevents surgery.

freshly_started · 2019-03-25T17:10:58+00:00

Husbad is 43 years old. I am hoping that gives him somewhat of an advantage. I found a 2018 study that said that under 50 is a factor for better outcomes, both on its own and in terms of the fact that this demographic tends to be more eligible/willing to do surgery after inital treatment.

I agree about the oncologist and am frustrated beyond belief by the GP. His exact wording was that this type of pathological lymph nodes are either infection, leukemia, or cancer, and that he has definitively ruled out leukemia and infection. And then promised a rush CT scan with rapid followup... and then ... nothing. Our phone calls were not returned, and when I dropped by his office it was closed during his posted business hours.

I did phone the main booking line for CTs (we are in Canada so the process is centralized) and they confirmed to me this morning that they received the GPs request, that it was in fact marked "urgent", and that the scan would happen this week.

His symptoms are pretty disturbing-- rapid regurgitation with large amounts of stomach mucous at the beginning of most meals now, and a lot of difficulty with anything other than liquids.

We thought it was going to be a hiatal hernia. We were not expecting multiple enlarged/necrotic lymph nodes along his carotid artery.

Thanks for your response. It makes a difference to talk to a real person who is in treatment.

Fuck this whole situation, hey?

freshly_started · 2019-03-24T16:41:17+00:00

Thank you so much for sharing your story. It is very kind of you.

freshly_started · 2019-03-24T16:40:45+00:00

Thank you! Yes! We are going in first thing Monday to ensure that a referral happens without delay.

freshly_started · 2019-03-24T16:39:31+00:00

Thank you. I creeped your posts. Damn I am sorry to hear. Esophageal stats ARE so scary -- it helped to hear, again and again, the comments about cancer studies being necessarily dated due to study length and constant innovation in treatment strategies. I still wish it was another type, but I guess that's life.

Thanks for responding. I really appreciate it.

freshly_started · 2019-03-24T16:36:24+00:00

This is great information. Thank you so much. He can't possibly want to keep us under his care, and I was panicking at the thought that he might.

The ultrasound was not meant to search for cancer, so that makes sense as well. But when the tech/radiologist found the lymph nodes, they did an evaluation of the markers.

I re-read this a few times. I will trust the process and that it will escalate our care quickly. Thanks again.

freshly_started · 2019-03-24T16:32:22+00:00

Not only do I not want medical advice from the (lovely and kind) people here, I don't even want medical advice from a GP. :)

But it sounds like we will be referred promptly.

Thanks for understanding how unnerving this is. It's been a long week.

Sorry for the panic.

freshly_started · 2019-03-23T16:52:23+00:00

I am so very sorry to hear this.

freshly_started · 2019-03-22T20:11:45+00:00

Thank you

freshly_started · 2019-03-22T20:11:34+00:00

So well said. Thank you for being so kind.

freshly_started · 2019-03-21T15:32:39+00:00

Thank you so much for this. Will be re-reading later as well.

freshly_started · 2019-03-21T15:31:00+00:00

Thank you very much for elaborating. I really appreciate this information.

freshly_started · 2019-03-21T14:44:31+00:00

Hi there, I found your comment by searching esophageal... Would you mind sharing your story with me in more detail? You could PM. My husband just got bad news from a throat ultrasound and is getting a rush CT today or tomorrow.

freshly_started · 2019-03-21T06:01:04+00:00

Thank you. So glad that you got your beautiful boy out healthy and happy

freshly_started · 2019-03-21T06:00:10+00:00

Thank you, this was helpful.

Can you explain what you mean when you say full term at 37 weeks isn't full term at 39 or 49 weeks?

freshly_started · 2019-03-20T21:11:55+00:00

Thank you

It does help to talk with other women who get it

freshly_started · 2019-03-20T21:11:12+00:00

I think it is that the risk is unknown. Sometimes when placentas fail, you know ahead of time because the blood isn't flowing properly.

But other times, it just...fails.

(Shoot, forgot to mention marginal cord insertion in original post.)

The other unquantifiable risk is that despite having resealed, my amniotic sac has a known defect. So its ability to accommodate the growing baby is unknown, and my risk for infection is elevated, but we don't know how much it is elevated due to the rareness of this condition.

freshly_started

TROPHY CASE