Diagnostic beginning: I was first... - SHARE Metastatic ...

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Diagnostic beginning

Catlady58 profile image
9 Replies

I was first diagnosed with breast cancer in 2003. I was 43 years old with no family history of the disease....and because I was under 50 with no history, it took me 1 full year, 3 mammograms and finally an ultrasound that I had to throw a hissy fit to get...to finally be sent for biopsies. I worked in the medical field, my husband and I both knew something was wrong, but with a history of fibrocystic breasts, my doctor kept insisting the right breast lump I felt, that was swollen and tender could not possibly be cancer....probably too much caffeine he said. He did order a mammogram though and I was told the lump I felt was a fibrocyst, cut down on caffeine and do warm soaks. Six months later, no relief and more insistence, I had mammogram number two. I was given the exact same advice and told cancer doesn't cause pain so the fact that I had pain was a good sign that it could not be cancerous. Six more months later, my right breast had dimpled, the color was changing and the pain was so severe I couldn't stand for it to be touched. When I went back to the doctor again, I was angry. My physician said he'd order a third mammogram and I told him if he didn't order an ultrasound this time I was finding another doctor because I was positive I had cancer. The technician did the mammogram, again insisting it was just a cyst but found a spot on the left breast this time as well and said it too looked like a cyst. I reminded them an ultrasound had been ordered and I would not leave without it being done and done by the radiologist, not a tech. When the radiologist was done, with a clearly concerned face, one full year after this story began, my world became a full on race as I was referred to the best breast surgeon in town for not 1, not 2, but 3 biopsies which were done the next day. Frozen sections were done as I continue to lay on my stomach on the stereotactic table with my breast viced into the table while waiting for results...I had cancer in both breasts large enough that required bilateral amputations...mastectomy for a kinder word. Within hours, schedules were made for CT scans, bone scan, sentinel node location, surgery with reconstruction. My families life took a turn on September 22, 2003 that started at stage 2.

Thanks for listening. I'm going to pet my three cats, then take a nap while I wait for my hubby to get back in town this evening and continue this story later.

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Catlady58 profile image
Catlady58
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9 Replies

Hello again Catlady!

Thanks for sharing more of your story. I really feel that we have to be our own advocates when it comes to this disease. We have to keep pressing for answers, tests, and the best care we can possibly get because sometimes what we need is not forthcoming. Doctors may look at our age and think we are not likely to get breast cancer, but it can affect anyone. Even men can get it!

When I was diagnosed in March this year, it came as a shock to me and the medical team too, as I also have no family history of breast cancer, am in my 30s and have been in great health all my life. If I had not gone in to get a suspicious lump looked at, I would not have stood a chance, as I would not be offered a mammogram for at least another decade and it would have been too late by then. When my GP who first caught it called me (as she was about to move) to see how I was getting on with treatment I thanked her for saving my life. As it is, I now feel that I have a fighting chance. There will be a cure for us all at some point in the future, I am certain of it!

Sophie x

Julie2233 profile image
Julie2233

Hi, you’ve been through the ringer, it’s exhausting isn’t it. It also took me a year and 4 visits to the doctor before I was referred. I could tell it was bad news as soon as the consultant saw my breast.

I kept telling the doctor that l’d lost 3 aunts to breast cancer but it didn’t make any difference, she said I wasn’t the type to get cancer, the crease was because I was getting older and the lump was progesterone.

This site has allowed me to tell my story (repeatedly, sorry) and it has been very cathartic to be able to talk to people who understand.

Barbteeth profile image
Barbteeth

Hi Catlady

I was dumbfounded when I read your story..even if your doctor really was convinced there was nothing cancerous there is no excuse for not getting another opinion or an ultrasound because you were clearly worried and it would have put your mind at rest

I’m not a doctor (retired dentist) but if a patient of mine had toothache and I couldn’t find the problem I would always ask another dentist to have a look..I know teeth are different but it’s the same principle..

I was 40 when I first had cancer..tiny lump..no pain but my GP sent me straight away for a needle biopsy..had mastectomy the following week

Barb xx

nstonerocks profile image
nstonerocks

I skipped a mammo in 2013 and was diagnosed 2014 with mbc. It took me a long time to forgive myself. Thank God my oncologist didn't beat me up over it. She said it could have occurred within the year. Sometimes I think I want to see that 2012 mammo to see if they missed anything, but what is the point? I don't have the psychic energy. Before the mets were found, I thought this was just surgery and post op treatment like all the other women in my family. I was coming home on the bus from my pre op testing when the surgeon called me in a panic asking me if I had had pneumonia recently. It was mets. The man sitting next to me was leaning on me snoring away. I asked the doctor if I was going to die and he said no. I knew better. Somehow I made it back home and then freaked. Post op the surgeon said "you better get your house in order," and sent me out into the sunlight to ponder my death sentence. There should be some immediate aftercare for situations like this. So here I am...

in reply to nstonerocks

I wouldn't beat yourself up about anything you have been through, Nstonerocks! None of us wants to be diagnosed with metastatic breast cancer. We have not chosen this for ourselves. I asked my first GP what could have caused this (as I didn't fit any of the risk factors) and she just said it was a lightning bolt. I have breasts, so that put me at risk!

I think you were treated very insensitively by the surgeon. I was reading an article recently about how medical professionals in the UK need more training to deal with life and death situations so that they can treat patients with more compassion and care. Just look at how well you have done so far. Four years post diagnosis is more than the doctors predicted and you are likely to live for many more years. I hope I can get to where you are and continue to live for many more years. I am eight months post diagnosis and six since starting treatment, so every passing month feels like a milestone to me. I think I will celebrate when I reach the first year!

Sophie x

in reply to

Amen, Sister!

Juliandrea profile image
Juliandrea in reply to nstonerocks

Nstonerocks, Sophie is right, we are at risk because we have breast. If it puts your mind at ease . Just because you missed your mammo doesn’t mean you could have prevented it. Too be honest no country does it right when it comes to breast cancer prevention, or early detection. Something is not right and I don’t like it. I was diagnosed mbc this year right from the start. I thought I wasn’t at risk and it never crossed my mind. I went for my mammograms and didn’t miss one. As a matter of fact they saw something that they thought was nothing and I had an ultrasound done and they found nothing . I have had 5 mammograms, two ultrasounds in two years and they found nothing , and when I noticed my breast changing this year. I went and with a biopsy determined I was mbc. My specialist said I have had it for over 2 years. You are going to do well with treatment. We will be around for a long time my friend. There isnt anything else we could have done to catch it early, but we sure are going to respond well to treatment now.

in reply to Juliandrea

Thanks for that, Juliandrea. I can’t help but think I messed up big time. But, it won’t help me now to continuously rethink or blame myself. I had to let it go. Thanks for sharing your story. You’re right, the system is very flawed, and we’re caught in it. We do the best we can and grab and savor every moment. 💕

nstonerocks profile image
nstonerocks

Sorry Catlady for all you went thru. It sounds like a trial by fire.

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