Afraid of what avaits me...

[Mima10]

Hello everyone.

I dont know, what I am expecting from writing here. Maybe I just need to vent to some people, that know how it feels to be in my place.

Firstly, english is not my first language, so I am sorry for any mistakes.

I am 38 yo female and I have been having som discomfort in my lower abdomen for some time now. It was on and of. I have allways been more on the constipated side, not eating regulary or particulary healthy nor unhelathy. My water intake was never exemplary. And also covid and work were stressing me a lot.

So I was not worried at first. It really was not anything painful or limiting. I figured that I feel better without gluten, lactose and coffee and since I have allergies and had reactions after some foods (alergy flareup like hay fever, blocked sinuses, red mildly itchy face, bloating,...), I started to limit them more or less succesfuly (cravings are hard and I love food). It seemd to help more or less.

Last year was very stressful for me, since my beloved grandpa (97) started to deteriorate quite quickly after covid infection. It was several hospitalizations for him from late june and we lost him on 23. October. Until the end, he was active, alert, wise, curious and most of all loving. I miss him terribly.

When I am stressed, I don´t eat and also when the stress is extreme (it was several times last year) I have urgent bowel movement and I vomit. Not good for my digestive system. I lost some weight, but when I started to eat normaly, I was not loosing more.

I started to have frequetn morning cramps, all day long gurgling sound in my stomach, few days of pain around stomach, intense belching and some lower abdomen pain, but it felt more like muscle pain or little cramp when I changed position for example from sitting to standing, not deep, not intese, almost unnoticable... It was during last months with my grandpa. What is funny, most of these symptoms went away or are much less frequent now. In the past also had what I though were internal hemmoroids - like swelling aroud my anus. It went away with over the counter medicine. Sometimes, my back hurts, but my posture is tragic, I sit a lot in my job... Basically I feel fine. I am working, I am active (love walking in nature). Nonsmoker, I do not drink, I am not and never have been overweight. But I love food and when I am not stresed, I eat with joy. I dont feel fatigued or exhausted.

But I found some mucus first in my stool and then mucus with blood one day. I was thinking it can be cancer or IBS with hemorroids or IBD with some histamine intolerance, diverticuli... I contacted my primary care doctor and she send me to gastroenterologist.

I will have gastroscopy and USG of abdomen in two weeks. Our healt system works slowly and also I was delaying contacting my doctor because I was anxious and also occupied with situation with grandpa. My mom, dad and I were primary caretakers for him.

I am absolutelly terrified of the results. I was afraid before, but now I feel, like my life is close to its end.

I find out, I have a lump behind my left collarbone, near my neck and I googled... If it is swollen lymphnode, it looks like Virchows node. Which is sentinel node for GI, abdomen and thoracic cancers. It shows advanced malignancy (late stage 4) and it is positive for cancer in approximately 54%. It could by nothing, but since I have symptoms, I feel like my chances of benigne results are almost nonexisting. I dont thing my chronic sinus inflamation could cause chronic enlargement of my lymphnode, since Virchows is usualy not reactive.

I am terrified of hospitals. Always have been. I have never had an surgery, never hospitalized. And I am so scared, what it would do to my parents, if I get diagnosed with stage 4 colorectal or other cancer. They have only me and my brother. And we are very close. I fear for them. I fear it will breake them.

Now I am praying for lymphoma, since they have better prognosis. I know the prognosis of stage 4 GI cancer, I know our healt system. And if I have what I feer, my future will be probably short. I can´t talk about this with any of my relatives. They know some things, that I have some GI problems and that the lymph node is serious thing. I told them. They are stressed, bud they dont take it that seriously as I do, since I suffer from healt anxiety. I can´t focus on anything else now. Two weeks seems like eternity on one hand, on the other, I do not want to know the results.

I really dont know what is next, if my sono shows tumor and metastasis (liver? lungs? pancreas or brain?)... colonoskopy? CT? MRI? How long will it take from now to potencial start of treatment? What hospital to choose. What s the best treatment course and if it is awailable here in my country. If my health insurance would aprove and cover it. I dont know who to consult, where to get second opinion. Who is world expert in this field and I if would be able to reach them... How to apply for trial studies of new medicines if there are some.

I don´t wont to die. I want to stay here as long as possible. But also, I don´t know if I am strong enough to fight, if I will be diagnosed. I think I am not that strong.

So wish me luck and strenght. Thanks for any responce or advice and sorry for such long text.

[GCCA-Survivor Administrator]

Hi Mima10,

Thank you for posting with us. I am sorry about hearing about your grandpa. It's always tough to deal with things like that. 97 is a long life. It sounds like he was very aware of his surroundings and loved ones.❤️

You are doing what most "common sense" people would be trying. You first start looking at what you are eating and your lifestyle to see if you can make changes that will give you the results you're looking for. I find myself doing that all the time. If something is happening to me, I always look back to see if it's something I've been doing that's different and perhaps that could be the cause. Given my health history, I don't venture outside my circle of foods that I know agree with me. Sometimes I do a little bit of that and then I wait and see how it's going to affect me. If it's negative, I quit doing that.

With the symptoms you're talking about especially with the presence of blood in the stool, it was good to get that checked out. You are correct that it could be a symptom of a lot of different things. This is why it's important to get it checked out so you don't have to speculate as it is speculation that drives anxiety.

It’s good you are on the path starting with a gastroscopy and USG (ultra sound) of the abdomen. I think ordering these two procedures means your Healthcare is taking your symptoms seriously. This may be able to tell you a lot about the gurgling sound you're hearing and also check to see if there's a cause for the blood being in the stool. I hope you are able to find a good diagnosis using these two procedures. I'm surprised they're not going to do a colonoscopy as well. A CT scan could be beneficial as well. Every three years I have to do both a colonoscopy and an endoscopy and I get that done at the same visit. I also get an annual abdominal CT scan as well. I'll be doing that for the rest of my life.

I have always looked at these tests as being very beneficial and I actually look forward to the results. I am glad that we have the medical capability to do that. We all have our own individual approach to health care and also we drive our own anxieties towards that. I think a lot of the anxiety is very much an individual choice. I think if you look at not knowing what’s going on versus having a shot at knowing what’s going on, you need to know what’s going on👍. So now your medical team is gonna give you some procedures to hopefully give you a definitive answer and put you on a targeted path to being well. Right now it’s continues to be speculation🤔.

These tests can be so beneficial👏. You said it could be many different things going on besides it being cancer. That is where your mind needs to be. There are a lot of things that could be going on. Does your family have a history of cancer or other certain diseases? That’s a good thing to know as well.

What you need to do is look at these tests as enabling you to get on a path to a healthy longer life. Anything you can do to get there will enable you to be there for your family and your brother. You are not only doing these procedures for yourself, but you are also doing it for your family. That’s a very strong motivation. That’s where your mind needs to be. This is something you have to do to put it all behind you on focus on yourself and your family. Right now a lot of your focus is being afraid of hospitals and the results of some tests. But these hospitals and tests are going to help you be there for your family and your brother. Your doctors, the hospital and these tests are a part of your TEAM. You need to focus on getting diagnosed and hopefully these two tests will do that. Then you focus on whatever therapy is required to put you on a path to being well.

And please know you can always reach out here if you need to vent what’s going on. There is the option of doing a private “Chat” on this site as well. The "Chat" is where I would be the only one looking at and responding to you. No one wants to die and I don’t think you’re on your way to doing that😁❤️. We all want you here as long as possible.

You are stronger than you think . You are correct that you need to be strong to fight. I think you’re very strong as you have come this far and are going to get those tests that will get you some answers. Those are some big steps you’ve already taken . Those steps take a lot of courage and strength to do. I see a lot of people avoid doing that. You may not want to know, but you need to know. You are on the way to doing just that. So look at yourself in the mirror every day and say it’s the right thing to be doing. You’re not only doing it for yourself but you’re doing it for your family so that you can be there a long time.

In my situation, I ignored some symptoms and I paid a big price. I went to a physical and told my doctor I had a tender lump in my abdomen. 2 days after that I had a CT scan and two days after that I was standing in front of a surgeon. Things can happen quickly. I had stage 4 colon cancer. I was diagnosed in 2012. I’m still here😁👍🙏. Not to say that you’ll need this, but cancer research is a very impressive thing. I benefited from a clinical trial with a therapy that was developed for certain lung and melanoma cancers. I had colon cancer.

You ask many good questions. Your questions are the questions a person who has been diagnosed with a metastatic cancer would ask. You are not there. However, there are some good answers. There are organizations that use artificial intelligence (AI) that take your diagnosis and do a worldwide search for known therapies and possible clinical trials. I would absolutely use these as a second opinion. If I ever have a cancer reoccurrence, that is my plan. I would also make sure I sought treatment at a research hospital. If you wanna put your mind at ease, I’ll leave you this list and you can go look at what they do. These are just a few, but there are others as well.

leal.health/

xcures.com/

massivebio.com/

I am going to wish you luck because that’s what you were looking for here. However, I don’t think you need luck. You are doing the right things and I think you know it. You have taken many steps that show strength in just putting yourself out there to find these answers. You know your driving motivation is that of being there for your family and brother. That's where your strength comes from💪💪.

I think you’ve got this. In two weeks, hopefully you’ll have the answers you’re looking for. And just knowing you’ll be going in the right direction because you got these answers should be very encouraging. Encouraging to you. Encouraging to your family as well.

And please do keep us informed the whole way. Feel free to jump in here and vent. Many people here on this site have experienced very similar things during their health journey.

Remember ... You Got This👍❤️💪

Tom

[GCCA-Survivor Administrator]

Hi Mima10,

Quick question ... if "what is next" involves a CT scan or colonoscopy, are your options good to get that done?

[Mima10 in reply to GCCA-Survivor]

Hi Tom. Thank you for you reply and ecouragement. If not for that lump in left supraclavicular area,I would worry less, but statistics seem pretty bad If it is confirmed lymphadenopaty, it shows advanced cancer in most of the cases. I will have it checked in week and a half.

I am in EU, sadly not one of those most advanced countries. But we have universal healthcare,so mri, ct or colonoscopy will be provided for free. The waiting time might be an issue,but luckily there are private practices and I might be able to afford to pay for express examination if needed.

We have three specialized hospitals treating only cancer,two of them in capital,but not nearly as good as in US.

[GCCA-Survivor Administrator in reply to Mima10]

I was reading about healthcare in Slovakia. It is one of the lower funded areas in the EU as far as healthcare is concerned. You seem to be very aware of that as well and how to navigate it.

I do wish you all the best in getting answers. It will be good to get definitive information about what’s going on. And please do let us know what you find out👍❤️

[Mima10 in reply to GCCA-Survivor]

Hi there, just updating. I am getting virtual colonoscopy with contrast both drinkung it and intravenous next Tuesday. The waiting time for normal one was so long... I had an earlier date for the virtual one,but I was sick, so I had to postpone. I am still anxious about my results. Symptoms are on and off, mostly very mild. And I am also anxious about procedure,but partly happy,because they will be able to check if the ultrasound didnt miss something .

So far I have been diagnosed with reactive/chemical gastropaty, histamine and lactose intolerance.

Ultrasound of abdomen - liver,pancreas, spleen and gallblader was all ok. No lesions or enlargement, no enlarged lymph nodes in that area.

Blood tests also quite good. I have mild anemia.

Do you have any tips for preparation and procedure itself? Thank you ♥️

[GCCA-Survivor Administrator in reply to Mima10]

Tips … move the preparation timeline up 2-3 hours so the “wave of misery” is past and you can get a good night sleep. Do that the day of the procedure as well. It is always good to get answers and get on a path and be more certain why you’re on it.👍❤️💪. You got this👍

[zien88]

Hi Mima10. How are you today? I also have several symptoms like you mentioned, but just like you, I'm also afraid to see a doctor eventhough I'm a healthcare worker 🥲

[Mima10 in reply to zien88]

Hi there, just starting preparation for virtual colonoscopy I will have next Tuesday. Dreading the procedure and results, but its necessary.The waiting time for normal colonoscopy was absolutelly horrible. I could have the virtual one sooner,but had to postpone, because I catched some virus at work.

So far I had endoscopy of stomach and duodenum. They found chemical gastropaty in my stomach and lactose and histamine intolerance from biopsy of duodenum. Ultrasound of abdomen was normal. I had period of time with annoing night reflux. Still have some,but its much better. And belching is my new constant syptom since endoscopy. I strongly suspect I might have SIBO.

I had ultrasound on my lymphnodes,which came back ok, no doctor seems to be worried about them since they are small and looking normal on ultrasound.

I also had a lot blood of tests done. Nothing except low lymphocytes and mild anemia found so far.

I still have symptoms, on and off and I was unable to find triggers so far, but they seems to be food related. So I must wait and see...

Just go to the doctor. I know how scary it is, but it is the best you can do for yourself. I also know how scary is not knowing and guessing. The anxiety is absolutelly terrible. All the thoughts about future and illnes and death...

I think,being health care proffesional might actually worsen your fear, since you know and understand a lot more about medicine than others.

I was able to manage the worst anxiety with a help of medication. And I am also starting therapy.

It is not helpful at all, to avoid doctors due to fear of what they might find. But I completly understand why are people doing it.

Wish you all the luck♥️ feel free to write anytime.

[GCCA-Survivor Administrator in reply to Mima10]

Awesome message👍❤️

[GCCA-Survivor Administrator in reply to zien88]

Hi zien88

First, thank you for being a healthcare worker❤️👏👏. Just curious, we all know the healthcare system and trying to navigate it can be difficult. You’re an insider. If you want to share, what is making it an “afraid “ situation for you?

Tom