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How were you told you have cancer?

Re: How were you told you have cancer?

Posted by JoannaO on Jun 11, 2020 6:38 pm

Yes, today :( . I was given some pamphlets and thought I should use the resources because I feel like everything is happening so fast. I have not checked out the breast cancer discussions yet. Thanks for posting the links. Will be checking them out.

Re: How were you told you have cancer?

Posted by Yuliya on Jun 11, 2020 7:39 pm

JoannaO‍ Let me just hug you. You will find a lots of comfort and support here.

Re: How were you told you have cancer?

Posted by JoannaO on Jun 11, 2020 8:10 pm

Yuliya‍  thanks, I appreciate the virtual hug. I am so glad I found the support here. 

Re: How were you told you have cancer?

Posted by Dammitnotagainangie on Jun 16, 2020 6:46 pm

Right when the COVID shut down started I called my family dr thinking I was constipated. She never actually saw me and told me to take a laxative and to call back if there was no progress. Let’s fast forward a week. By now my stomach had ballooned out so I looked 8 months pregnant. I called Easter Monday as there was a late clinic my dr was doing. I was crying and I begged for her to see me and that things weren’t right. She didn’t. She instead gave me a prescription for colonoscopy juice. That stuff is terrible and went threw me. The next evening my husband took me to the hospital because he was fed up with my dr. He was not allowed to come in with me. I had a ct and an ultrasound. The dr came in and told me that the good news was that my guts were clean as a whistle but there was a 3 inch mass on my right ovary. I was allowed to sit in the car and tell my husband. The following week I met with a specialist at a cancer centre. I was scheduled for a total hysterectomy the following week. During that time I deteriorated. Couldn’t hold anything in. Couldn’t sleep. I had to go for testing on the Monday. I ended up collapsing on the floor during screening. I was taken to emerge and scanned. The ovary had burst. I had no idea. I hadn’t felt a thing. I still have no idea when it actually burst. So my surgery was moved from the Thursday to the next day. It went well. The dr. Took everything. Cervix, uterus, both ovaries and tubes. When my stomach had ballooned out my husband noticed 2 lumps on my back. We figured they were fluid pockets. 
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. 

Re: How were you told you have cancer?

Posted by Rayline on Jun 16, 2020 11:42 pm

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.

Re: How were you told you have cancer?

Posted by Dammitnotagainangie on Jun 17, 2020 8:46 am

Rayline:
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 am feeling much better since surgery. It’s been 6 weeks so I’m ok to do normal stuff again. I go back to the surgeon on the 30th for a follow up. 
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. 

Re: How were you told you have cancer?

Posted by JustJan on Jun 18, 2020 7:28 am

On January 11, 2019 I went for my annual mammogram. I was 59 and had just retired. I have been having mammograms since I was 40 as my paternal grandmother had breast cancer but otherwise no history of cancer in our family. Well that afternoon I got a call I needed to go back the next week for another mammogram, ultrasound and biopsy. To say I was shocked is an understatement. My husband was working out of town for the second appointment so my good friend came with me. After the biopsy was completed, I asked the radiologist if she found something concerning and she said yes. She felt it was cancer but wouldn’t know the type or details until pathology report came back. She did say the lump was small and it appeared there was no node involvement so felt it was caught early. I really appreciated her honesty but the wait for the path report was excruciating. My family doctor called me with the results and I was in to see the surgeon five days later and then surgery three weeks after that. I will say I have never experienced anxiety like that in my life and was sure the anxiety would get me before cancer had a chance. 

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. 
Strength doesn't come from what you can do, it comes from overcoming the things you once thought you couldn't. - Rikki Rogers

Re: How were you told you have cancer?

Posted by pamnbella on Jun 24, 2020 11:23 am

I was told I had cancer after I visited the emergency room for the exact same symptoms for about the third time. I think they got tired of seeing me show up, before they kept on saying that it was just my degenerative disc disease acting up and causing problems. Luckily, one doctor decided to do x-rays and I believe he was my life saver. He did a CT scan of my stomach, chest and other things. After the scan was done he came back to my room and informed me that I had a large mass and he believed it to be an ovarian tumor and to be cancerous. He sent a request to a local gynecologist here in Fredericton and one to Dr. Williams in Moncton.

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.

 

Re: How were you told you have cancer?

Posted by Rayline on Jun 24, 2020 10:43 pm

pamnbella‍ you have been through a lot. May I ask where things are at for you now? Are you still in the hospital? Hope toy hear back from you and I am sending you a big hug💕

Re: How were you told you have cancer?

Posted by pamnbella on Jun 25, 2020 9:43 am

I am home from the hospital now, for almost a week. My chemo doctor just called me and said my blood test I had done a couple of days ago were great. When I went in to the hospital originally he said my cancer marker was at 3800 and when he called today he said after one chemo treatment it dropped to 700. My next chemo is tomorrow so we shall see how that round goes. My hair is almost completely gone now, I knew it would happen of course, but it still for some reason made me cry. I decided not to go with a wig but to use cancer beanies, scarves and hats instead. That way I can change my look each day😀

Hugs back at you, I'm sure we could all use them.

Re: How were you told you have cancer?

Posted by Rayline on Jun 26, 2020 12:31 am

pamnbella‍, I am so pleased for you as your news sounds very upbeat besides losing your hair. I did not have chemo as an MRI to locate breast tumour uncovered lung cancer also. Both cancers were stage one so our system would not do chemo. But I am sure is it just insult to injury to lose your hair. It definitely changes the way we look and almost like wearing a sign. One good thing is it is just temporary. My daughter is in Fredricton and she has told me it is very hot there. Drink lots of liquid and wear something to cover your poor head. Thinking of you❤️

Re: How were you told you have cancer?

Posted by PastaCat on Jun 27, 2020 12:17 pm

I have read all of your posts and my heart goes out to each and every one of you!

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.

Re: How were you told you have cancer?

Posted by Gigsy on Jun 27, 2020 11:35 pm

A year ago I had a papilloma removed in my right breast. Non cancerous as most are. Fast forward a year later. I sleep with my little dog and she stretched and kicked me in the breast and it hurt. I thought this cant be good. So next morning I felt my breast and there was a lump. They wanted me in thunder bay on 18th of dec/2019for a biopsy  but with xmas and weather i postponed til jan. Got the results back and my np said if you have to get cancer this is the type to get 90%curable. Ok. Went for the lumpectomy and that's when it came back tnbc. How could they get it so wrong?

Re: How were you told you have cancer?

Posted by Cynthia Mac on Jun 28, 2020 7:19 am

Hi, Gigsy‍ , There are so many answers to your “how” question!

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. 
“When the root is deep, there is no reason to fear the wind.” - Japanese saying

Re: How were you told you have cancer?

Posted by sgt. pepper on Jun 28, 2020 9:40 am

Hi There,

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.

Sgt. Pepper