mlouise

Breast Cancer- seeking reassurance and self checking

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Long story short: one of my good friends was diagnosed with breast cancer last month (discovered by her gyno at her annual appointment). It has been devastating. I have been self-checking like a wild woman, every time I am alone. I went with her to chemo last week and sat and the bathroom and did not less than 30 self breast exams. I thought I found something but wasn't sure. The next day was my annual and my gyno did a breast exam. He said everything felt fine. 

There is this one spot that I am sure that he missed. I cannot stop checking. Even my daughter asked me yesterday why am I walking around with my hand in my shirt. 

I am not convinced that I don't have BC like my friend. Should I believe my dr? What if he was in a hurry and missed something?

I am supposed to start my period in 2 days so everything feels lumpy and bumpy. I am driving myself crazy. Should I go back and see my dr? 

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You need to take a rational approach here.  First,   Checking yourself too often is useless.  Imagine checking yourself every hour.  Nothing would ever feel like it changed because it would be so slow!

Your doctor examined you, and saw no issues.  That’s great. But there is a screening for this, so go get it.  Get a mammogram.  Digital.  And if it’s clear, plan your next one based appropriately on your age.  

(And be supportive of your friend and know that BC is one of the most treatable diseases. Recently it was recommended that many just needed surgery and chemotherapeutic agents aren’t even necessary.)

 

 

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I talked to my dr extensively about mammograms, etc. at my appointment. We agreed to wait until I am 40 or if something comes up. I talked to him about my friend and my concern with BC (in tears, I might add) and he told me the pros and cons and said that he did not see a reason to order a mammogram at that moment. 

I feel that ordering a mammogram would be like getting an MRI if I thought I had a brain tumor or a pelvic ultrasound for an ovarian cancer fear. My dr told me that my anxiety is the root cause of my fear and mixed with what was going on with my friend, I am in a big time scare. My mammogram comes back clear, great. But what about next month and the month after? My friends tumor grew in a matter of 2 months. I would be there constantly trying to beat a fear. 

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Well, it sounds like you are doing everything you need to be doing!  My wife started mamograms at 35.  Of course, the media would have you believe women in theirs 30s and 40s are dropping like flies from BC.  When in fact the median age is like 67 or something.  Now, in terms of years-of-life lost, that is why screenings are started when they are.  One can be forgiven for feeling dazed.  2-3 different recommendation on WHEN to start 'grams, conflicting advice on monthly self-exams.  

My wife also got a TVU just to screen her for OC. At her request.  Doc was like "sure."  Afterward, I said, "so, doc, why dont you just do this for EVERYONE?"  Then I answered, "Let me guess, because false findings will end up causing more morbidity than the lives lost to the disesase."  In other words, as an example, more people will die of pneumoia they got in the hospital during their surgery or biopsy or whatever than the number of lives saved by looking at everyone.  Family history, etc, can change this computation majorly, though.  

My mom was told by her doctor "If you get a mammogram annually, unless you get something out of left field that dramatically rapidly grows, it will catch anything in terms of curative treatability."  But but but that leaves the worrisome "out of left field" thing....  So you need to compare that with other "out of left field" things -- Hit by a cement truck, lightning strike, slip-and-fall death, sudden cardiac death.  We all live with them but just dont notice it usually.  Parents fear some rare and incurable childhood disease that kill a few hundred every year, but for some reason not their kid drowning, which kills 3600+ kids per year -- something they can actually do something about.

Now, maybe for some other logic....I realize you are upset by this but think of it this way....go look up the "statistician on an airplane" joke.  What are the chances of both you AND your good friend having the same disesase, at your age, at the same time?!?!  

 

 

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Yes...common sense tells me that A. my Dr. didn't feel anything and B. the chances of being diagnosed with the same exact thing as my friend, who I see everyday and work with, seem pretty slim. 

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Of course us with HA know that common sense takes a backseat when we are acutely 'hanxious'.  A few years ago I had an EGD and another a year and a half later.  Now when I recognize those symptoms I go on Nexium for 2 weeks and try to relax.  I think "this doctor has real, genuinely sick patients to see, and I'm wasting time and taking away appointment slots for this nonsense." 

Every little pain for me can be 'my pancreas' or 'my stomach' or 'barrett's disesase!'.  At 39, not obese, dont smoke, eat healthy, keep active....yeah, a major disease process could occur but it would be the proverbial runaway cement truck.....is what it is.  My aorta could dissect, or my teeth melt and run down my throat.  I could have a brain aneurism.  Best comment i read on here was someone with concerns of major disease who said his doctor looked him over and said "You do realize this is bull&hit, right?"  We say 'yes' but it sure feels real.

 

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It definitely feels real. It feels super real. 

TRIGGER WARNING  ⚠️ 

My friend who has BC....it’s the worst kind and it’s Stage IV. 1% chance. I love her and I might lose her soon. Found at her annual appointment by her gyno. That terrified me. Still does.

Being with her while she was getting chemo last week was literally me sitting in the nightmare I’ve tried to run from for 7 years. I couldn’t take it. It affected me way than I thought it would. It’s been close to a week and it still gets to me. 

My friend is getting married Monday because her and her fiancé don’t know how things will be in a month or longer. She is living my hell. 

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Oh my. I feel horrid for your friend. Everyone's worst nightmare! I hope she finds a way to make peace with wherever this leads her.

Please know her story is not yours!

And, don't get a mammogram. If you are younger than 40, they aren't great at picking things up b.c young breasts are so dense, lumps aren't visualized as well. Even over 40 that is still a problem. You are taking care of yourself and your doctor felt and he sees no need. Leave it at that! Self check if you must be every month, not everyday!

 

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I was doing great today. No self-checking and thinking good thoughts. 

Then I checked and I feel doomed. I have spent the last 2 hours checking. I feel something here and there and my dr obviously missed this spot and this spot. 

I feel like I am in a black hole. I don't know what to do. 

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Maybe you need to get a mammogram that is digital and will handle dense tissue.  Then you need to put your mind at ease.  Its perfectly ok to id a risk and then screen for it.  I started my colonoscopies early, at 33, due to a distant family history.  

Here's a statistic.  1000 (One Thousand) women-under-40 in the US die from breast cancer annually.  4000-4500 per year of women aged 21-40 die in car crashes

Being supportive of your coworker would be great.  Also keep in mind that even 'stage 4 BC' has become, in general, more of a chronic disease that is treatable for years.  Individual results may vary.  But 20-30 years ago it was a whole different game.

Save your worries for an aortic dissection and rupture.

 

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AndrewF, that doctor comment you so kindly quoted was my doctor when I came to him with fear of a disease my childhood friend had been diagnosed with.

Louise; i know how you feel. When i was 35 my mother was diagnosed with a certain disease. I immediately confirmed I had it as well. I had the symptoms. My HA really started up on that day. I had the testing and amazingly (sarcastic) I didn't have the disease.  Then 2 decades later a close friend of mine was diagnosed (and unfortunately succumbed) to a certain disease. I again felt those pains similar to the symptoms you read about for the disease my friend had.  Off to the doctor. That prompted the "you know this is BS" comment.

It's magical thinking to expect because someone you know/read about, etc has a given disease that this increases the chance you too have it.  As I've said many times, you have to ask yourself a basic question: Do I trust/respect my doctor?  If the answer is No then you need to find a new doctor. But if the answer is Yes, you need to Let. Go. He/she has seen thousands of patients and it would be no skin off his nose to say yeah sure, let's get you tested. The very fact he said no need is very reassuring.

Bob

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Update: 

I spent about an hour with my husband 3 weeks ago and cried my heart out. I let everything that bothers me mentally out and put it all out in the open. I haven't slept so well as I did that night. I went 2.5 weeks without self checking or even thinking anything about this. It felt like a huge weight was lifted off of my shoulders and I was able to focus on my real issues with anxiety and myself. 

But its back this week. I am supposed to start my period this week (actually yesterday) and haven't and my emotions are all over the place. My friend with BC needs my help with chemo and wants me to go with her to her PET scan tomorrow. I don't know what is going on with me but I am back in the dark place I was in a few weeks ago. 

I don't know how to help myself. 

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1 hour ago, mlouise said:

Update: 

I spent about an hour with my husband 3 weeks ago and cried my heart out. I let everything that bothers me mentally out and put it all out in the open. I haven't slept so well as I did that night. I went 2.5 weeks without self checking or even thinking anything about this. It felt like a huge weight was lifted off of my shoulders and I was able to focus on my real issues with anxiety and myself. 

But its back this week. I am supposed to start my period this week (actually yesterday) and haven't and my emotions are all over the place. My friend with BC needs my help with chemo and wants me to go with her to her PET scan tomorrow. I don't know what is going on with me but I am back in the dark place I was in a few weeks ago. 

I don't know how to help myself. 

Hi. I really understand your story. My best friend since high school passed from liver cancer 5 years ago at 34 and left 4 babies behind. I was there with her every horrible step of the way. Our last words to each other were.. I love you and I will forever be grateful that I had that time with her. It was horrible and it has effected me in so many ways. What i wish I would have done during her journey was seek therapy. You are going to go through emotions and grief.. you are already grieving for your friend. I went through a period that I was scared of my friend, I felt guilty for being healthy.. I mean the emotions are endless. I'm so sorry that both of y'all are going through this. You are an amazing friend. My friend went to a huge well known cancer center and I know her family was offered free therapy sessions.. I bet if you ask her Dr on the side without your friend hearing.  She might be able to help you with finding a therapist in the hospital and it might be free. My health anxiety sky rocketed after her death. If I burped wrong I'd lose it. 

I am here for you, we all are. I've been there sweetie and you are strong.. you are an amazing person and I'm proud of you. You don't have breast cancer.. is it normal to be scared Bec of what you are seeing your friend go through. Big hugs. 

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Thank you, Holls. This really meant a lot to me. I need to start back with therapy. It really helps so much. 

Things are the same with me, I guess. Good days and not so good days. All I do is worry. I just can't move on from it. I self check like a maniac and one minute I feel silly for thinking the way that I do and the next I am planning my funeral. 

I don't know how to move past this. 

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This was me last year except my doctor found a lump in each breast. Luckily it wasn't anything. I had to have a mammogram to be sure but they saw nothing at all. It's just my breast tissue. I read so much on BC and I even asked questions on the BC forums. I self checked every chance I had seeing if it changed or if it was still there. Well 1 year later both are still there and I have learned how important it is to self check once a month. The week after your period is when you should check. I had a 3d mammogram and learned that my breast are entirely fatty, which explains why I never could produce enough milk for my babes. However most women at our age have dense breast tissue and the mammogram wouldn't put your mind at ease. Interestingly enough my mom got a mammo with me and they found a lump, did ultrasound and she has to watch it and report any changes.

I cried myself to sleep every night thinking the worst. Reading all these stories of women who are like your friend. It's so heart breaking and it just puts into perspective how fragile our lives are. You want to be a good friend and be there for her but you have to remember it's her story and her struggle. Not yours. You are fine and will be fine physically. Just try to remember that when helping her because this is going to be one of your biggest challenges with HA you will probably have. I will pray for your friend and hope she can go into remission for years to come. I will pray for you to have peace and guidance through this. 

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This spot that I feel has not changed and to be honest, I feel the same thing on the other breast. It doesn't hurt. And some days I never feel it at all and can't find it. 

However, I am CONSUMED. I look at my daughter and think "Your mom has breast cancer and you might get it, too." WHAT. 

I finished my period day before yesterday but I am still having achy under arms and spots here and there that ache when I rub them. More so in the side that is concerning me (of course) and I don't know how much is real and how much is me hyping things up. 

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2 hours ago, mlouise said:

This spot that I feel has not changed and to be honest, I feel the same thing on the other breast. It doesn't hurt. And some days I never feel it at all and can't find it. 

However, I am CONSUMED. I look at my daughter and think "Your mom has breast cancer and you might get it, too." WHAT. 

I finished my period day before yesterday but I am still having achy under arms and spots here and there that ache when I rub them. More so in the side that is concerning me (of course) and I don't know how much is real and how much is me hyping things up. 

So when I get like this and can't get it out if my mind, I go to the Dr. Have you been to your gyno and had her feel for you? That might be the only way you will get passed this.. if you have been and she says everything is good then therapy might be the only way passed it.. 

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I went at the beginning of June and was told “everything felt normal” and nothing is there to be concerned about. Some days when self checking I think “REALLY that is what you are worried about?!” And then the next I’m like “whoa that is cancer and he missed it and went to fast on the breast exam and I’m going to die!!!”. 

But im like this about the other boob, too. What’s this? What is THAT?! Oh that doesn’t feel normal! All day. 

Deep down (deep deep deep down) I feel that I am ok. And that I am just perpetuating my friends diagnosis onto myself. 

But then I think “maybe I have it so we can go through it together”. 🙄🤦🏻‍♀️

 

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2 hours ago, mlouise said:

I went at the beginning of June and was told “everything felt normal” and nothing is there to be concerned about. Some days when self checking I think “REALLY that is what you are worried about?!” And then the next I’m like “whoa that is cancer and he missed it and went to fast on the breast exam and I’m going to die!!!”. 

But im like this about the other boob, too. What’s this? What is THAT?! Oh that doesn’t feel normal! All day. 

Deep down (deep deep deep down) I feel that I am ok. And that I am just perpetuating my friends diagnosis onto myself. 

But then I think “maybe I have it so we can go through it together”. 🙄🤦🏻‍♀️

 

I'm so sorry that you are going through this with your friend.. you have been checked and that's good news. So anytime you start to test and feel you need to remind yourself I've been checked, I've been checked and resist the urge. 

I did the same.. it's almost like survivors guilt... I felt bad about being healthy when my friend was sick. I actually had a baby while she was having her cancer reoccurrence and I wouldn't talk about the baby Bec I felt like it would upset her since my life was good and hers was not. There is just so so many emotions involved in being there for someone with cancer. I really urge you toseek help. I wish I had. 

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