Facing Cancer Recurrence, PTSD & Acknowledging Mental Health

@eewtao, I'd like to add my welcome to you as well. I hope you don't mind, but a tagged you in another discussion in the Brain Tumor group here: https://connect.mayoclinic.org/discussion/optic-nerve-meningioma-patients/?pg=3#comment-248995 Another member was asking about treatment options, many of which you had. You may be a resourceful connection for her.

Welcome to @jeanadair123. You have a very unique situation in having a doctor care for you who has also had cancer. Have you heard the term "Scanxiety"? I don't know who coined the term or when, but I think every person who has cancer experiences it - the uneasiness waiting scans during and after treatment.

Hello Everyone- I am loving all the responses to my post. I think that when we suffer we feel isolated and alone. Many of us can't find words to describe how we feel. How do you describe horrible fear, loss, the fear of death and so many other feelings? We aren't brought up to express our feelings about such non-concrete things. So how do we go about realizing what they are and expressing them? How do we go about not feeling alone? Are we the only alphabet letter left in our soup? Of course not! We are one species with many many differences but feelings are pretty universal. We are a very self-centered species that think that only "I" feel this way. When I realized this, I am ashamed to say, as an adult, I realized that others were feeling the same thing I was. Maybe a bit different because we are, after all individuals. When I'm afraid of my next CT scan coming up in January I know that I am not alone in my fear of recurrence. There's even a word for it, Scanxiety. We are not ever alone because there is always someone, especially on Mayo Connect, to connect with us, who understands and feels what we do. So we all need to voice those feelings, to invite people to know that they aren't alone or isolated.

I had just recovered from my mastectomies and was pulling myself back together when my husband started having odd symptoms (fainting spells, tremors, etc). We spent two years trying to discover the cause. He was pretty much spending his days sleeping and unable to live his life. Oddly, it was during a routine lung scan for his COPD when we discovered he had a tumor in his lung. During a biopsy to determine if the tumor was cancer or benign, my husband had one of his fainting spells and they diagnosed a heart condition. He has had heart surgery now and his symptoms have resolved greatly. However, they have no idea what type of cancer my husband has. It has been a full year and we've gotten every diagnosis from Stage 1 lung to Stage Four terminal cancer of unknown primary. We are settled now on Stage Four Unknown Primary. The doctors (3 different oncology groups and much testing) and they don't know. They've offered and taken off the table every treatment option (except medical marijuana, which we are using). They won't do radiation to the tumor and lymph node because they don't want to eliminate that possibility down the line (?), they won't do surgery and they are hesitant to do chemo (as are we) because they could use multiple drugs, most of which could be wrong and not have any positive effect. So we wait and do PET scans every 3 months. The only positive we've had in the past 12 months is that the tumor and lymph node activity goes down each 3 months and we can only attribute that to two possibilities....either the marijuana is holding it off or reducing the cancer or it might have been a cancer that would either recede on it's own or is just waiting to explode at some point. It's been the most frustrating experience of our lives. We've been told he has a cancer that is at the worst possible stage but there is no treatment, just waiting to see when and how bad it will become. We can't plan, we can't fight, we just have to wait........the doctors are truly baffled. We had one doctor walk out on us and have had to find new doctors and fight an oncology system that is not prepared to treat cancer when they can't identify it and follow a protocol. From the Mayo Support site I have found several cancer survivors and caregivers where there are misdiagnosis and similar paths in some ways but a cancer where the primary site of origin isn't detected is fairly rare, so on we trudge.
It's hard to have cancer but if you know what your options may be and can make decisions on a path and your future, at least you have a 'path'.....we don't even have that so we live day to day, not knowing what will happen and it's emotionally exhausting. We were told my husband had months to live, maybe but we are celebrating another holiday season together and hoping we can find and identify the cancer source or perhaps it will continue to recede (wouldn't that be nice) and move on cautiously with our lives.

Hi Cindy- I have heard from some other people their frustrations with the oncology departments when they make either the wrong diagnosis or when they can't help with one. I'd want to scream because I always need to know EVERYTHING! I am tough on my doctors. Have you been to just one medical facility or have your tried others?
Cancer research has come so far from : https://www.cancer.org/cancer/cancer-basics/history-of-cancer/sixteenth-to-eighteenth-centuries.html
Research is far from perfect and underfunded. It also involves human interpretation, the handling of specimens and instruments. Often the latest equipment isn't available or people can't afford to go to the "best" places. Also, there is no cure! Medical personnel are finding that cancer is much more complex than they expected and there are more sub-cancers with every year. Medicine isn't perfect.
When our faith in our doctor's knowledge is questionable it makes every thing even worse. I am so very sorry that you are struggling like this. And you are so right, having a path,at least , gives a way forward so you can live your life as best as you can. When you don't have a path it's like wandering around a desert with no traffic signs.
I wish you a peace this season with your family and wish you both the best possible outcome.

Does anyone ever get over multifocal adenocarcinoma or our lives going to be ct scans. We can never be considered cancer free can we. I go for my ct scan on Monday morning and then see the dr on Tuesday. This waiting between scans is the hardest. I started going to a counselor when I met her at pulmonary rehab. She’s been a life savior and I talk about everything. So usually schedule apps with her quite often. I could write a lot more but I know everyone in here has health issues and some of you are a lot worse off than I. So my heart and prayers go out to you as I know what you are going through and remember the good Lord is right beside you

Sakota- Multifocal is a category of lung cancer that since 1960 was a redefined bronchioloalveolar carcinoma when it was discovered that people could have more than one lesion. Here is some information about it: http://www.hematologyandoncology.net/archives/september-2014/managing-multifocal-bronchioloalveolar-carcinomalepidic-predominant-adenocarcinoma-changing-rules-for-an-evolving-clinical-entity/

For now, since there really haven't been much published, if anything at all, about longevity with multifocal adenocarcinomas. I was actually looking for that yesterday. I was like, "how long do I have, how long?"
I'll live with CT scans over the alternative. I wish you well too and hope that your holiday is a good one. But let's keep in touch here. Hopefully there will be others joining int he near future.

Interesting. I am on my second cancer - fist lung five years ago, now liver. Now there is also breast lesion we are setting aside until we deal with treatment for number two. I had no idea this could even happen. Very depressed, very anxious, very angry, probably in permanent denial. Not suresure how to take any of this.

I could use some help here. I can not sleep more than four hours any more. I awaken and cannot get back to sleep again. Currently tale low dose xanax but only as needed to get back to sleep. I want no dependencies.

@padovani- Welcome to Mayo Connect! I'm sure that you feel all of these things and I wish that you didn't have to! My advice for you right now is to take just one day at a time. Do you know what your treatment will be for your liver cancer? Is it a primary or have they biopsied it?
Here is a link that you might find helpful: https://www.verywellhealth.com/lung-cancer-spread-to-the-liver-2249263

I also never thought that a recurrence would happen. I had changed my life around and was "doing all the right things". Someone needs to redefine that saying.
For the time being, until this is under control do you feel like you would want to ask for medicine to help you get your feelings under control? It might help you see thing more clearly I think. Your denial will come and go but your other feelings will take a bit of time. I love the quote, "The difficult we do immediately, the impossible takes a little longer." I had to look at this on my refrigerator every day so I might slow down.

@padovani- Unfortunately many sleep meds are very addictive. Have you considered taking a long term anti-depressant during the day? I will last all day into the next when you take your next one. Xanax might be wearing off after 4 hours. Sleep habits are difficult to break. I know when I don't get very steady sleep I'm a mess. Without sleep any other problems are exaggerated.

Good sleep habits are very important: https://www.sleepfoundation.org/sleep-tools-tips/healthy-sleep-tips

Has anything happened to set this off? Do you have any other problems that can be causing this? Have you spoken to your doctor about it?