Things I never knew about breast cancer
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My only risk factor was a child after 30. Breast fed for 9 month. Non of the others apply to me. So blind sided when I got my diagnosis. Two family members with ca: one with stomach and one prostate. Both were in the mid to late 70's when diagnosed. No one is immune.
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I did not know that treatment for breast cancer varied so much from patient to patient, from doctor to doctor, from this hospital to that cancer center, in different regions of the U.S. and then around the world. I thought there were strictstandard procedures that were followed in each case. Within the framework of traditional medicine, there are many approaches to dealing with bc.
I did not know a dimple in the breast was a potential sign of bc. I had a big dimple on the underside of my breast where I found the lump. I'd noticed it a few days before when I happened to see it in the mirror. But I normally didn't look at my naked breasts in the mirror, and I don't really recall instructions to look in the mirror when doing monthly breast exams to check for something like that. It is not something I could have noticed in the shower or getting dressed because of its location.
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HI Everyone, Just thought of another one, never thought it could travel to your eyes!!! Best wishes to everyone!
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Hi Divine. Like you, I was shocked that there was no consensus as to how to treat what I have, or what the prognosis is. I got several different opinions, and everyone had different outputs. I did not know that there were surgeons out there that would claim that lymphoedema and neuropathy no longer happened these days (ha!), and did not expect some surgeons (including the lymphopathy/neuropathy denier) to push for reconstruction, against my will! My GP told me from the outset that many surgeons had 0 interpersonal skills, were patronising, hid information from patients (including side effects from treatment), and tried to boss patients around: I am afraid he was proved 100% right. I did not expect that many people (including some of the said surgeons and my employer) just expected me to resign from my job to get treatment: who is going to pay the bills? I was probably better prepared than most, as I had known people with bc, but it was still a crash course.
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I didn't realize that tissue around the breast could become malignant. When I was getting dx they turned the mammography machine vertical and stuck whatever flesh they could in the machine to get an image. I am still traumatized by this and it has been 2 years. I hate breast cancer!
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mom writer Thank you so much for your praise of nurses! Hallelujah! We are very dedicated hard working women and men whom do NOT get the respect we deserve so I applaud you. Good luck in your journey....
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Re: Lymphadema
I recently learned from my lymphadema-certified physical therapist that lymphadema can be a *symptom* of breast cancer. I contracted lymphadema before my diagnoses. I noticed a weird tingling and a little swelling in my right arm, but thought nothing of it. I certainly did not associate it with my breast!
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The experience was totally different than the "as seen on TV" version of cancer. I had no idea how many types of breast cancer there were, my only risk factor from the list was over weight, and the mammogram and Ultrasound told me I had young breasts, not to worry....hmmm 2 years later stage 3A triple positive....... Things change super fast in the breast cancer world of treatments.
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many things I did not know about breast cancer. What most comes to mind is how I was scared to death of chemo and realize now that it is bad but not as bad as I thought it would be. It's doable.
I also learned the doctors don't know that much about bc. My surgeon was shocked after surgery that I had lymph node involvement because the biopsy of the closest node showed none and the size of the tumor on the ultra sound measured 1.2 cm. During surgery it was greater than 5 cm. How is that possible? Mamogram even the new digital one didn't pick up any tumor for 10 years. I now know that imaging can't be trusted.
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Hi Everyone, Another thing I never knew about breast cancer is that almost 1 year after treatment I would feel so crappy. I did enjoy a 'honeymoon' period after radiation where I really got back into some sort of normality. anxiety has really got to me plus all the side effects of the treatment. I didn't realise that the problems linger like they do. Since my diagnosis, I have picked up neuropathy, lymphedema (in breast and arm), seroma in breast (lingering after the surgery) and osteoporosis. Hope everyone else is doing better than me. Love Muriel
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I'm right there with ya, trying to get on with a normal life again and now I'm dealing with seemingly Lymphedema (breast and arm), shortness of breath (ongoing) and lump in throat feeling (which the doctors are telling me it's probably just anxiety). I'm not typically an anxious person, but I guess that can be the case. I guess I just thought that if the cancer was gone I would be back to the way I was before, so far not true but it's still early.
Christine
ps.. I understand everyone's problems are relative. I want to apologize to others who are dealing with much more.
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I honestly believe Breast Cancer and especially Recurrence is a crapshoot! No cancer in my family, I breastfed both boys and had a healthy lifestyle I was dx at 44, Mammo didn't' pick it up nor did annual breast exam and it was 3 cm!! After chemo, rads and hormonals and going completely organic and exercised daily, I had some vague back pain. Whammo, extensive bones mets, liver mets while on tamoxifen. So, I honestly think it's a crapshoot!
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Not so much a crapshoot, simply no guarantee, regardless of what tx we choose, that it won't occur/recurr. There really is nothing we can do, at this time, to guarantee us anything
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I'm pretty sure that it's a crap shoot too. Especially for us HER2+++ girls.
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Yes the anxiety is a huge problem and it seems to hit just when you finish treatment and you think you are going to feel great but you don't!!! No one really understands your feelings about the possibility of recurrence so I tend to keep it to myself. Take care everyone out there in BC land, Love Muriel
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Muriel, that's exactly where I'm at now. My DH says "you're cancer-free...just enjoy". I don't have the heart to tell him that it will be on my mind for at least the next 5 years and there is no 'cure'. He wants to be positive and I get it but I'm not there yet
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Hi Reepac, Yes your right, no one really understands how you feel only the ladies on these wonderful forums! Love to all Muriel
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Had no idea dense breasts put us at higher risk for breast cancer development and that getting a clear mammogram report doesn't necessarily mean you don't have breast cancer. I had no idea that dense breasts can hide cancer and that a clear mammogram doesn't mean everything in your breast is fine. I had no idea that inherited breast cancer only counts for about 20% of all bc dxes. Somehow I felt more protected knowing no one in my immediate family had ever had it, but didn't I get a surprise end of Sept, 2011.
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I had no idea that the 75 mile difference between home and UCSF would make as much difference as it has. Home is not considered rural by any means, but the comparison of care is incomprehensible! Why the local medical providers aren't following the same protocols (surgically) as the 'big dogs' just baffles me. The MOs are on the same page but the surgeons are decades apart!
Moral of the story...get a second opinion from a tertiary facility like a University or big cancer center
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I agree it is a crap shoot. My 1.9 cm tumor which was node negative with a favorable hormone and HER2 profile and hit hard with treatments came back less than 2 years later in 2 spots. Now the worry about the vague back pain, vague abdominal pain, etc is magnified exponentially from my first time.
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When doing a beast exam...ALWAYS check your armpits. I found a swollen lymph node in my armpit after shaving...total luck! Turned out to be stage 2 grade 3 IDC.
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My cancer treatment was completed in August 2014 and I am on Tamoxifen. Question..... When I had my lumpectomy, I was told that there was no lymph node involvement. They removed two nodes. I thought I had a pinched nerve - my arm has been aching from typing too much. So I went to see my GP. She detected a couple of slightly swollen lymph nodes and tomorrow, I will have an ultrasound. Seriously... could this really be cancer? I can't even process it at all. Anyone in this position?
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goodnessme: is the aching and swelling on the same side as your lumpectomy? It could be lymphedema. There are several threads on these boards, as well as general information here. Are you still being seen by your MO? I'd ask him or her to evaluate the swelling. Best wishes on the ultrasound.
Octogirl
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I learned that you have to be your own advocate (like many of you here!). I was told at 31 that it is extremely rare to get breast cancer so young. I was told not to worry because it felt like a typical finroadenoma. I also read that breast cancer doesn't move under skin. Mine moved around quite a bit and was mistaken for a Fibroadenoma. In the three months that I first found it, it grew from 2.5 to 4.2 cm. even at 4.2cm, I could move the whole thing around under my skin.
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goodnessme: how was your ultrasound? Too much typing can be a trigger for lymphedema. Can you get a referral to a certified LE therapist?
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Yes BC31, You certainly have to learn to advocate for yourself, that something I've learned very quickly. I think in some ways even more so for 'lower' risk patients with BC as a lot of docs seem to assume that something isn't cancer because of your early stage. Its a mine field out there!!! Best wishes to everyone Love muriel
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What I have learned from breast cancer -- as the husband:
My wife and all of the other women who have breast cancer as a lot stronger than me
How to truly love -- how to love someone so much --- when you see someone go through what my wife has -- you have no greater admiration, love, and devotion to anyone every in your life
Breast Cancer - will steal your normalcy -- you are no longer Jeff, I am forever the husband of someone with breast cancer --- I am forever in fear of what I may lose -- but she doesn't know how scared I am
How much I hate to be in the car alone --- leaving/driving to work kills me everyday -- I feel like I am leaving her
How to enjoy, truly enjoy when things are going well. Those few days were there are no doctors appointments, no worries, no wondering of what is next.. just you two, the kids doing something as simple as playing a board game or carving a pumpkin for Halloween
Kids are so resilient -- who would of ever imagined that my 7 year old would know what a hot flash is, or have to watch her mom lose her hair --- but still bring that smile and love day in and day out into the room and into our lives
How to stand up and be her advocate- when to also just sit down, say nothing and just hold her
Breast cancer has taught me -- I CANT FIX EVERYTHING ---
Breast cancer has taught me to stop wishing for my wife back --- she is already right here with me - live each day --- if you don't -- cancer has won more than you know
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Amstar15 your words moved me to tears. Thank you so much for sharing them.
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Amstar, thank you for your thoughtful, sensitive and honest comment. I wish you, your wife and your family the best.0
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Thank you Amstar15 For your lovely words. How true what you said. I have to continually remind myself as to what my husband is going through. He has been my rock and it certainly brings home to me how to love someone for better or worse. I wish you and your wife many happy times together. Love Muriel
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