Posted by JoannaO on Jun 11, 2020 6:38 pm
Posted by Dammitnotagainangie on Jun 16, 2020 6:46 pm
After the surgery I had lots of scans and a biopsy on a lymph node in my left armpit.
when the results of the surgery and the biopsy came back it turned out that I have stage 4 melanoma. The mass on my ovary was melanoma as well as the lumps on my back. I just had my second immunotherapy treatment today. I’m on the I drug and the n drug. Sorry I don’t remember the names exactly. So yea. That’s how I found out. Have I heard from my family doctor? Once. To say she was sorry to see the results. I had choice words (kept my cool and didn’t swear like I normally would) for her. In my defence I was and am still pretty upset with her. But everyone else has been absolutely wonderful.
Posted by Rayline on Jun 16, 2020 11:42 pm
Posted by Dammitnotagainangie on Jun 17, 2020 8:46 am
Dammitnotagainangie wow you have been through a lot in last short while. Getting a cancer diagnosis is extremely overwhelming and throws our whole world into chaos and upside down. Are you feeling a little better after the surgery? I was diagnosed with lung and breast cancer a year ago so I know a little of your plight. Take good care be extra loving to yourself. This is a great site lots of good caring people. Hope you can keep in touch.
I’m riding the hardest part is the immunotherapy. I haven’t run into problems with side effects except fatigue, a round of hives and yesterday during treatment I got really really flushed so they had to stop and give me Benadryl and a steroid then they continued treatment. The hard part is finding things I enjoy doing that doesn’t affect treatment. Swimming in the river - no. Sitting at a patio - no. Gardening - probably should be avoided. I didn’t think it would be this much of an adjustment. I can’t even go to the dentist unless it’s an emergency. Not that I enjoy going there but I do need dental work done and had a plan going with the dentist before covid. So yea - finding new things to do that will also get me out of the house is tricky but I’ll figure it out. I am also supposed to avoid going to work but I’m self employed so that’s not going to happen. I love my job so I’m putting most of my time and energy into it so I keep my mind occupied.
Posted by JustJan on Jun 18, 2020 7:28 am
Fast forward to May when my oncologist ordered a baseline CT scan and mass was found on my ovary. So more surgery and indeed another primary cancer was identified. Somehow I knew when the mass was found it was going to be cancer (even though I hoped it wasn’t) and wasn’t surprised by the diagnosis. It was quite a different experience hearing it the second time. I knew I had to put my big girl panties on and just go with whatever lay ahead. I am so grateful for the care and attention I have received and that both cancers were found at Stage 1.
Posted by pamnbella on Jun 24, 2020 11:23 am
I had my first meeting with the specialist in Moncton but the results from my biopsy weren't back yet. I signed a consent form to have surgery done. After I came back home, a couple of days later I had a meeting with Dr. Laity and when I was at my visit I was having a difficult time breathing and could barely walk so she called ahead to the hospital to let them know I was coming to the emergency room and they did some tests and they found out that the fluid was pressing up against my lungs and causing them to begin to collapse and that my kidneys weren't working. That's when I was admitted and the oncology doctor notified and things started progressing from them on.
Posted by pamnbella on Jun 25, 2020 9:43 am
Hugs back at you, I'm sure we could all use them.
Posted by Rayline on Jun 26, 2020 12:31 am
Posted by PastaCat on Jun 27, 2020 12:17 pm
My diagnosis is very recent. On June 1st I had the most excruciating abdominal pain. I was out with my husband taking our dog for a walk and almost passed out. I was able to make it home, but I was sweaty and in so much pain I could hardly think. Being a good nurse I took some tylenol 3's I had on hand from a previous injury and went to bed at 7PM as I had to work the next day. At work I knew something was wrong as the pain was climbing steadily again and I was unable to sit still or concentrate. I called 811 (Health Link in Alberta) and they were afraid it might be Secondary COVID symptoms and advised me to go to the nearest ER STAT. By the time I drove myself there (oops) I was barely coherent I was in so much pain! They did xrays, blood work, more blood work ... and it was all clear. I bawled my eyes out as I was so frustrated. The doctor in the small town ER told me that they believed me and were sending me to the bigger hospital south of us for an ultrasound.
At the "big hospital" I had my ultrasound first. The tech just kept saying things like "that's weird" and "are you sure you're not pregnant?", "you have weird anatomy". Then I got the dreaded, "I need to get the radiologist to come and look at you, don't move". The radiologist does a quick repeat of the ultrasound and says, "Our CT machine is just getting fixed, you'll need to wait for a CT as soon as the machine is up and running". Cool. CT revealed lots of "free floating fluid" in my abdomen, and a wonky appendix. They sent me immediately to ER to consult with the Emergency surgeon.
I saw the ER surgeon who was kind and prepped me right away. Appendectomy done, burst ovarian cyst found, cleaned up and all sewn back together. Appendix sent off to Pathology as standard practice. I get discharged the next day being told that indeed the appendix looked "strange" and that I had a hemorrhagic ovarian cyst that had burst. I call the surgeons office to get my 8 week follow up appointment and all is good. I call my family doctor to follow up as I am overly cautious. I kept telling her that something was off and I was worried. She told me that she had read the report and that there was nothing to worry about, she denied the hemorrhagic ovarian cyst and told me there was no proof of fluid on the report. I was dumbfounded as that is what I was told by the surgeon prior to discharge. I hung up MAD.
Then I get a call from the surgeons office to move my follow up appointment to June 18th. Fantastic! I've been in healthcare for over 16 years, it never even dawned on me that when a specialist moves up an appointment it's usually important or bad news you're hearing. When I get the call he says "you're an RN right? Can I speak frankly with you?". I was absolutely gobsmacked by what he read from the pathology report. My abdomen is full of endometriosis and will need further surgeries ... also there was a small Neuroendocrine tumour in my appendix. He's worried about the likely hood of more tumours due to my family history. He sent me my actual pathology report, which required a lot of textbook diving to understand, I still don't fully get it.
Thankfully my family doctor is now on board, but it feels like they are conveniently ignoring the fact that she was dismissive to begin with. Now is my time to request specialists to take over these aspects of my care. I've learned that it's not so much as being pushy as being my own advocate. She's finally admitted that I am "especially complicated" with previous health issues and these new ones.
Posted by Gigsy on Jun 27, 2020 11:35 pm
Posted by Cynthia Mac on Jun 28, 2020 7:19 am
Last June (was it really only one year ago?) I had my dad to a cardiologist, and a young, new doctor did our pre-interview. He confided in us, “doctors have to guess a LOT.” I rather think the older specialist would have taken him aside for that one, but it’s true.
Any one ache in a human body could be one of about 10 different things, and patients usually want an answer before they’ve ruled out the first 9. We never did find out what was causing the “stomach agony” that got my Dad referred to a cardiologist, although, toward the end, we got a little closer to believing it was anxiety, because we’d ruled out so many other things.
I’m so sorry that your situation turned out to be something worse than you were first told. This happens a lot with cancer in particular, and I know that doesn’t make it any easier for you to accept.
Posted by sgt. pepper on Jun 28, 2020 9:40 am
Reading these posts I realize that question "how can they get it so wrong" is a major theme for my cancer journey. Ten years ago, I developed an ugly looking mole on my left leg and saw five different doctors, including two dermatologists who gave me wrong diagnoses. Finally a biopsy was done after six months of medical runarounds and it turned out to be melanoma. It was not treated since there were no diseased nodes found with surgery. Fast forward five years and I developed a lump in my groin, which the oncologist diagnosed as a hernia. Six months later, I was experiencing a lot of pain in my groin and was told that was not typical of a hernia, so after a CT scan it was determined that there were three large tumors in my groin and the original "hernia" was actually melanoma. I'm grateful that I'm still alive and cancer free today but find it scary that my life may have been in jeopardy with the incompetent doctors I encountered. I understand this is not unusual when it comes to getting a proper diagnosis and treatment for cancer. I have been left with serious trust issues with medical practitioners in general which will likely never go away.
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