The information on this site is not intended or implied to be a substitute for professional medical advice, diagnosis or treatment. Content within the patient forum is user-generated and has not been reviewed by medical professionals. Other sections of the Melanoma Research Foundation website include information that has been reviewed by medical professionals as appropriate. All medical decisions should be made in consultation with your doctor or other qualified medical professional.
Ok, having a deadly disease that induces constant stress along with eventual mortality is a bit of a drag. I’m here to say that if not for my metastases (now NED thanks to the scalpel and that Nobel guy Jim), six years of regular CT scans, and my diligence in obtaining and reading each report, I would likely be recovering (or not) from a heart attack. Images have shown progressive calcification of my arteries, and an alert radiologist got my attention last time around when they described it as serious.
I arranged for a cardiology referral, had a special CT heart test, then a seemingly unnecessary angiogram. Third time’s a charm: I am now the proud recipient of not one, but two stents in mt right coronary artery. The jumping of many hoops was required to obtain treatment, apparently there’s a bug going around. It also turns out there is no smartphone app for cath lab procedures. That’s an entirely different rant but not relevant to this board.
My point is this: In this entire endeavor I was on my own. Not one of my numerous doctors even mentioned it to me. My (recently former) oncologist had the nerve to question my decision to have the heart CT.
I implore everyone reading this to aggressively take control of your paper. Read everything. Look up any terms you don’t understand. It is amazingly easy to get a PA to generate a referral when they will only talk to you on the phone, basically tele-reference. It’s not like your primary intends to actually treat you anyway. Importantly, don’t assume any specialist will advise you on any subject outside of their box. A Chest/Abdomen/Pelvis CT report is a wonderful early diagnostic tool, and the information you learn can prolong your life so you can get more stuff done.
So glad you were able to advocate for your care successfully, db!!! It is a shame that we find ourselves in that position so often.
Many times scans lead to the discovery of what I call ditzels! Things that are doing us no real harm, but once they have been found, you are then obligated to figure it out!!! However, your experience was one I can also identify with. In 2018, I was have my “last” scans as follow-up for my melanoma as I was then 8 years NED post brain and lung mets. On the way home, I got a rather hysterical call from my onc…
“You have to go to the ER, right now! You have appendicitis.”
“No, I don’t!! I have no vomiting, diarrhea, nor abdominal pain.”
“But, we can see it on your scans!!!”
I prevailed and assured her that I did NOT have an acute abdomen. But, since there was “something” there, I was scheduled for a little lappy appy with my surgeon. Well, I was right. I did not have appendicitis. But, I did have an incredibly rare (esp in a Stage IV melanoma patient) ex-goblet cell adenocarcinoma of the appendix. Really had a hard time facing cancer #2. But, yes. You are right. Had I not had those scans, I would likely have progressed to Stage III or IV, rather than the Stage II disease they found, before symptoms would have forced the revelation, at which time successful treatment is almost impossible.
So, yeah! Thanks, Melanoma ~ I guess. HA! So glad you are well and that you persevered in personal advocacy!
I find those scan reports fascinating. For instance, I have ever growing gall stone and a secondary unitary track(!). Of course, my stage 4 melanoma was found because I was have a brain MRI every here months. The same appointment when I was told it was likely stable they found the brand new met that was growing really rapidly. My overall tumor burden was low but the brain met is big.
I was so lucky my brain tumor history diagnosed my melanoma snd I had treatment fast. Immunotherapy + surgery + radiation and I was NEX pretty quickly.
Viewing 1 reply thread
You must be logged in to reply to this topic.
About the MRF Patient Forum
The MRF Patient Forum is the oldest and largest online community of people affected by melanoma. It is designed to provide peer support and information to caregivers, patients, family and friends. There is no better place to discuss different parts of your journey with this cancer and find the friends and support resources to make that journey more bearable.
The information on the forum is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.