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My History of Melanoma & Currently Very Sick
Who else has a history of Malignant Melanoma and now you’re scared whenever you get severely sick?
I had a cancerous tumor in my chest when i was 17 years old due to Melanoma. I’m 26 now. I had to have the lymph node mapping done, with the radioactive dye shots in the location of the tumor, and to this day i still claim it as the worst physical pain i’ve ever experienced in life..even though the recovery process from surgery was brutal too. I had the tumor removed which resulted in 20+ stitches in my chest, and they also removed some lymph nodes from my armpit. I was “lucky” because the cancer did not spread so i did not have to do radiation or chemo. And i put the word “lucky” in quotations because i hate that word when talking about cancer. I was treated at a children’s hospital where i had to see sick children and babies fighting for their health when they weren’t even old enough to fully comprehend what they were going through, while i was the 17 year old patient that fully understood why we were all there, and it broke my heart so bad that sometimes i couldn’t even get myself to sit in the waiting room..and then i felt guilty for waiting in the hallway instead of being with them.
Fast forwarding through time. I’ve had many complications with my health and i have been seen at Mayo Clinic maybe 4-5 years ago i think (honestly it’s hard to keep track of everything). And i am now on the wait list with Mayo again because i’ve been sick for nearly 3 months now.
I’ve unintentionally lost about 20-25 lbs within 3-4 months (i believe i started to lose weight before the severe symptoms started).
One night i was having very bad Vertigo and it was scaring me because i haven’t dealt with that in a long time, so i went to a nearby hospital. (I also had a rash on my ear that was bright red and burning, but the hospital didn’t care about that). They did blood work, a urine test, a head CT, and a chest X-Ray. Blood work showed that some levels are high and some are low (but they didn’t tell me that, i had to find out from records that my primary pulled from the hospital). Urine test showed hazy appearance and a very small amount of blood. Head CT & Chest X-Ray came back clear. The hospital diagnosed me with Vertigo and prescribed me a suppository for hemorrhoids (because i had been having bad diarrhea and had / still have hemorrhoids).
Fast forwarding. The diarrhea colors and frequency became worse. I started having what i believe is muscle spasms in my stomach and i was constantly going to the bathroom, so i saw my primary after the hospital, as mentioned before.
Primary eventually referred me to a GI Specialist. GI doctor had me do a stool sample and she originally scheduled me for a Colonoscopy/Endoscopy for March of 2024 but it got pushed up to February 7, 2024. Stool sample tested positive for C Diff. I’m on Vancomycin now for 14 days for the C Diff.
I feel like i’ve only been getting worse with time. I have temperature fluctuations, random body pains that don’t make any sense to me, i still have the stomach spasms at times, the vertigo can be really bad at times, i feel weak and faint a lot of the time, it’s hard to swallow cold liquids and specific solid foods, i get random small rashes on my body that itch really bad but i try my best to tell myself that maybe it’s just eczema from the stress of being sick for so long, i’ve had a huge loss of appetite but i force myself to eat because i know i need to, i’m having upper respiratory issues too that have lasted for about a month if not longer such as coughing and always blowing my nose, and i know there are more symptoms but that’s all i can think of for right now.
I know that my Melanoma years ago was in my chest, but i had several cases of Severe Dysplastic Nevus for a few years after the Melanoma and they were in random parts all over my body. Such as my legs, my back, and my arms.
I’ve been trying my best to think rationally/logically and tell myself that my blood work from the hospital when all of this started would’ve alerted someone enough to do more to help. Even though some of my levels were high or low, my white blood cell count was normal..so, that’s good right?
I try to tell myself that i do have C Diff and i’m not a doctor and i’m not really educated on it so maybe all of these symptoms really are just from the C Diff and there’s nothing else that’s wrong.
I try to believe people when they tell me i’m just being paranoid because trust me…i’d love to know that i am just being paranoid and there’s nothing else to worry about.
But it’s sooo hard to not worry. It’s really hard to not wonder “what if”.
And if you can relate to this, i’m so sorry.
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I am so sorry you are going thru all of this. I understand how hard it is to be ill for so long . Cancer has a way of triggering all your fears and anxiety whenever something is happening in or to your body. I always feel like I have to be diligent to notice new symptoms and keep an eye on them... but then am I overly diligent?!
I just try to be balanced and remember It's a normal reaction... to really abnormal situation.
Be sure to find time to do something you enjoy...even if it's just sitting in the sun for a few minutes or listening to positive music that brings you joy.
I hope you have someone you can talk to about all you are feeling . Try Journaling if not or perhaps seeing the hospital Chaplain , or your faith foundation... even a supportive counselor or someone like that .
Sending you hope and prayers!!
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4 Reactions@notdefinedbyyou, You were burdened with this diagnosis at such a young age, it's no wonder it has taken a toll on you physically and emotionally. It's hard when you feel that you can't trust your own body and health, and you feel that your body betrayed you.
It's easy to get wrapped up in the 'what-if' and reacting to each new pain. I've learned to give myself time and to feel these things, but my strategy has been if a tolerable pain doesn't go away or worsens within 5 or more days, only then will let those thoughts come into my head. Then I'll reach out to my care team for input. In the meantime, I try to focus on a simple word, Forward. I had to stop looking back at the negative experiences and start looking forward instead.
Do you have a provider or doctor that you feel listens to your concerns? Are you able to voice these concerns with someone of your care team? A referral to a dietician may be helpful, can you ask about that?
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2 ReactionsYou're fortunate to have survived Malignant Melanoma. My brother-in-law wasn't so lucky.
A melanoma appeared on his left ear, and was surgically removed. The docs assured him that it was totally gone, but that wasn't the case.
Several months later he had trouble getting out of bed. He had lost the use of his left arm. He ignored it for a few days, thinking it was a temporary problem, but it wasn't. The melanoma had spread, and nothing could be done other than an array of medications to slow its' progress.
In his case, it was a fast acting version of the disease, with an expectancy of surviving less than a few months after diagnosis.
He was in and out of the hospital a few times, but only survived for a couple more months.
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2 ReactionsCall Mayo and get in immediately
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2 Reactionsthank you so much for your kind words and for explaining your thought process on how you handle things like this, i really appreciate it. I have a GI specialist. I’ve been on Vancomycin for about 5 days now and my symptoms only seem to be getting worse in my opinion. The GI doctor isn’t very nice in my opinion. She rushes me, talks over me, she has asked me multiple times in a condescending way if i can even afford the colonoscopy/endoscopy that i’ll be getting on February 7th, and when i started to cry in her office while talking with her because she was rushing me so bad.. she rudely asked why i was getting so emotional and brought up my mental health even though i was there for all of my physical symptoms and personally i think i kind of have a right to be a little upset with how sick i am and with the medical history that i have..ya know? (and i’d like to add that i was never once rude to her and i still haven’t been because i have a problem with being a people pleaser, especially with doctors who have a lot of control over what happens to me and my health). Her office and staff aren’t really any better except for one very nice clinician that i have a lot of respect for. I did request an appointment online with Mayo this past sunday though and i heard back from them yesterday! I have a telehealth appointment with a Mayo nurse on Feb 9th and a telehealth appointment with a Mayo doctor on Feb 12th to determine whether or not i need to go to Mayo to be seen. I really hope that they’ll help me more than the GI specialist i currently have because the doctor i have really seems to not care and i feel as though she minimizes everything i’m going through even with all of the horrible symptoms i’m having. fingers crossed!
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1 Reactioni requested an appointment online with Mayo this past Sunday and heard back from them yesterday! the soonest they could get me in is a telehealth appointment with a nurse on Feb 9th and a telehealth appointment with a doctor on Feb 12th. the doctor will determine whether or not i need to be seen in person. Honestly i wish i could’ve just got an in-person appointment because i feel like my symptoms are only getting worse, but maybe they want to do telehealth first because i have such a bad infection and they don’t want me to risk being exposed to more germs if i maybe dont have to..? i’m not sure. I’ve been sick for so long now though so i’m just happy i get to see someone from Mayo at all, even if it’s through telehealth.
@notdefinotdefinedbyyou, It's hard to hold it together when you don't feel good. Doctors should be compassionate, but sometimes they aren't. I'm sure most of us have a story where we can relate. I am glad that you are fortunate to have some choice in where you can be seen. Are there other GI specialists in your area?
Hi @notdefinedbyyou. I’m happy to see you have some telehealth appts coming up with Mayo! I’ve had these myself and they’re a great opportunity to get medical attention sooner. It also saves time and expense with not having to travel and find lodging for a consult appointment. You may still have an in-clinic appointment in the future but for now, it gets ‘your foot in the door’.
From my experience the first appointment is with a nurse coordinator. They’ll take detailed health information, history, symptoms, etc. The following week, you’ll have an appt with the doctor who will have had a conference with the nurse to get the preliminaries out of the way. That way the doctor can focus on the issues and the next steps.
The nurse and doctor will be very attentive so you won’t feel rushed. However your time will be limited so I thought I’d provide you with a little information with tips on how to get off to the best start with a new specialist. Here’s a link to some great ideas and conversations with other members in our forum:
https://connect.mayoclinic.org/discussion/your-tips-on-how-to-get-off-to-the-best-start-with-a-new-specialist/Wishing you all the best! Will you let us know what you find out?
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2 ReactionsHi. I am sorry to read that you are experiencing so many health issues. Are you concerned about a recurrence? If so, perhaps a PET/CT scan can shed light. Can you ask your primary physician for a requisition? If you are cancer free but suffering from multiple issues side effects from treatment look very carefully at what you can do—lifestyle choices that can improve your health. You are young. Take excellent care of yourself. Follow an anti cancer diet, hydrate, get enough rest and exercise to your ability. Avoid drugs and alcohol. If you are not getting a response from your doctor that satisfies you, get a second opinion. Make it a priority to get on top of your health issues as these symptoms can compound and become more problematic over time.
Best wishes.
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1 Reactionupdates:
i did a 2nd stool sample and some blood work. i’m still very sick but i’m confused because i didn’t test positive for C Diff this time. I do have some levels that are High and Low, but i’m not a doctor so none of it makes sense to me. BUN/crea ratio: 9 (reference range: 10-20). A/G Ratio is a little low: 1.0 (reference range: 1.2-3.6). Platelets: 462 (reference range: 140-440). Abs Lymphocytes Auto is a little high: 3.45 (reference range: 0.90-3.00). Hopefully my telehealth appointment with the doctor from Mayo this week will be helpful, hopefully she’ll have an idea for what’s going on with me. And i’m sorry to anyone who’s commented on here and i haven’t responded, there’s been a lot going on with my health so there’s a lot for me to keep track of right now.
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