Things I never knew about breast cancer
Hi everyone, In these days of substantial 'AWARENESS' of breast cancer I am now very aware of my lack of knowledge until I got BC myself. So I thought I'd start a list, please add anymore things you can think of. 1. mammograms do not pick up every cancer. 2. Ultra sounds don't either. 3. Breast cancer is not one single disease and everyones is totally unique. 4. Early breast cancer does not mean you are safe from recurrence, lots of stage 1 patients get metastatic cancer (the figure can be as high as 30%) 4. Sentinel lymph node surgery des not prevent you from getting lymphedema. 5. Percentages don't mean a thing especially if you are in that 1%. Look forward to seeing more gems 'of 'AWARENESS' Love Muriel
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you can do all the harsh treatments and still recur...a very common misconception out there.
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There's more than one type of bc? There are many different tx protocols? You can be stage IV from the outset and not have chemo?????? Who knew!
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There isn't a reason it happens and it is not our fault. And yes, that means it could happen to anyone.
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Unfortunately mammograms don't pick up all breast cancers, ESPECIALLY lobular breast cancers. Getting ultrasound as well is important and MRI if any doubts.
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Mammograms also don't pick up armpit lymph nodes
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Breast Cancer can grow from non-existent to invasive in less than a year - go for annual mammograms after age 40.
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After you're diagnosed, your radiologist can show you last year's imaging, pointing out how your cancer looked when it was too tiny to be recognized, yet, now that we know, there the little bugger is. Conclusion: Nix on the every-other-year scanning suggestion.
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Hi everyone, great to get all your input, keep them coming, there must be loads more! Best wishes Love Muriel
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FAMILY HISTORY IS NOT THE ONLY RISK FACTOR!
All of the following are also risk factors:
- Alcohol use
- Excess weight
- Menstruation before age 12
- Menopause after age 55
- No children
- No breastfeeding
I had four of the above factors. But I had zero family history.0 -
-3D Mammos don't always work on dense breasts- demand an MRI if you have dense breast tissue.
-no family history is no guarantee you won't get BC- ( and I didn't have any risk factors other than dense breast tissue)
-Nurses are the best--- they should be paid millions for what they do. They made my treatments of chemo/herceptin, and surgery all manageable and even pleasant (how could that be?!). I still smile when I think of them. -
-Once treatment is over, you're not done with BC, but hopefully your body is. It takes a lot of strength to move forward in spite of the recurrence shadow.
-Online groups (like BCO) can be really helpful and create community- who knew?
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Scrunch, my risk factors were menarche before 12 (I was not quite 11!), menopause at 55, having only one child--at 33, and was able to breast feed for only 6 weeks. Overweight but not obese; drank a glass of wine a day. But my MO said as long as I keep it down to a small (3 oz) glass 2 or 3 times a week I'll be fine. Thought being Ashkenazi might have been a factor, but I tested negative for the BRCA and PALB mutations. NO family history whatsoever!
And I concur that this new biennial mammo recommendation after 55 is ridiculous and will likely kill some women: your chances of getting bc rise from menopause to age 80. And my particular IDC wasn't on any earlier mammograms, not even 2014's. My breasts aren't dense--so as a corollary I learned that not having dense breasts doesn't mean that mammo is adequate as a first-line screening tool. From now on at my checkups I'll insist on ultrasound and maybe even MRI (though thanks to the new recommendations, I wouldn't be surprised if Medicare and private insurers refuse to cover them, or even annual mammos after 55).
Another thing I learned is that large breasts can complicate recovery from surgery. The weight of mine pulled my SNB incision open 3 wks post-op, spraying seroma fluid everywhere. Had to have it sutured. (And I also learned that being large-breasted can make it nearly impossible to find adequately supportive wire-free post-surgery bras--the only ones I could find that fit make me jiggle, which hurts and undoubtedly contributed to the incisional rupture. Thank heaven I was given the go-ahead to return to my underwires).
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I learned I can have no family history, no alcohol use, no excess weight, no early menstruation, not quite old enough for menopause, have children and breast feed them, and STILL get breast cancer.
I also learned, after getting breast cancer, that I have dense breast tissue, didn't know until 6 months after surgery.
I learned once active treatment is over (surgery, radiation, and/or chemo) that you are in this weird limbo for several years (or forever).
I learned about hormone therapy - had never heard of this.
I learned that most people think you are fine/over it/cured if you 'look' OK. They don't understand the mental part nor the long term odds.
I learned I had no idea what it was all about!
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The number one and most important risk factor for BC, according to my MO is drum roll please....... Being a woman with breasts!
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I learned breast cancer can strike at any age and it tends to be more aggressive in younger women! I was 36 at diagnosis. Triple Negative also! I also learned that most breast cancer is not hereditary so family history doesn't mean much for a lot of us. I pray for a cure all the time and for all of us here. XOXOXOXO!!!
Edit to add: I also contracted C Diff after my mastectomy and two more times during chemo and had to be hospitalized both times. So not only am I worried about BC recurrence/mets, I worry about C Diff! I fear antibiotics and also get scared every time I get diarrhea, which is often due to my IBS! So I learned about another life threatening illness after being diagnosed with breast cancer! Sorry for the rant but I still get angry at BC and C Diff.
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I've learned that complentancy is dangerous. Breast cysts are not cancer but if you are cystic you can't assume "it's just another cyst". My tumour was hiding behind a cyst. Every lump and bump should be checked. Some of us alsoneed to stop worrying if we are bothering the Dr over something "silly".
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Doctors do not always know best. Trust your body. I was that stage 1 node negative person who was very aggressive with treatment and recurred anyway...within 18 months...in 2 places.
When I felt the new lump I was told that it was just scar tissue. My gut told me otherwise and I asked for a biopsy. PS agreed and did excisional biopsy 2 days later. He said it looked just like scar tissue. 2 days later, I found out that it was cancer. Again. Had I not insisted on biopsy, it would likely have spread.
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Some breast cancers can not be seen with mammogram or with ultrasound or with MRI. They do NOT show up on imaging at all. Who knew??
Having a rash on your nipple can be a sign of BC. Who knew??
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I learned that dense breasts are a risk factor. I didn't even know I had dense breasts.
I learned that having no family history of bc didn't mean I wasn't at risk. I now know that about 75% of women with breast cancer don't have a family history of bc, and that less than 10% have a known genetic mutation. source http://www.breastcancerdeadline2020.org/breast-can...
You would think that with all the $ going to "awareness" more people would know these things. Time to put the $ toward something actually useful like research on how to save lives.
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I learned that having breast cancer was a longterm grieving process. Anger, denial, bargaining, acceptance and there's more but I forget. There's no one right way to deal with any of it either.
Oh and mention forgetting- I also learned that chemobrain is real to varying degrees with those of us that have "been there."
I learned that procrit, neulasta and neupogen- while doing a heck of a job at keeping us healthier, also make us feel pretty damn crappy. Mild to moderate bone pain? Ha!
I learned that nose hairs really have an important job, really. It's snot funny. If you think it's running, check and wipe your chin.
I learned that life is short, spend it while you've got it, do the things you've always wanted to- cause who knows when opportunities will come agin, enjoy it with those you care about and tough cookies to those who are too busy when you really needed them. People can be great and lift you up, or scared of losing you- yet in the process will lose your relationship anyway. Sad but true.
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Love this thread! I learned that breast cancer can hurt after reading and being told "cancer doesn't hurt". My early symptoms were pain in my breast and axilla. After months of obsessively doing self exams the lump showed up. After diagnosis I even told my BS and MO that my axillary nodes hurt and was told that it was probably inflammation from the biopsy. My sentinel node was a 1.7 cm tumor.
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Hi Molly, Glad you like the thread, thought it would create some discussion. I have another that I thought of this morning. Cancer does NOT play by any rule book. Stage 1 can go straight to Stage and 4, I always thought that it played 'nice' you know, Stage 1 and then Stage 2 etc. How stupid was I????????????????????????????
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People sometimes say that they did everything "right" snd still got bc. The problem is, we currently do not know what the right thing to do to prevent bc is. People also cite no family history, when the reality is that only a small percentage of bc cases are genetic mutations that are currently known.
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I never knew you could get breast cancer when you are only 31 until I did. I never thought you could get diagnosed with breast cancer 3 different times until I did. I didn't realise that your cancer could be picked up when it was Less than 1cm in your breastand too small to be seen on mammogram but still have spread to every corner of your body. Even having lived in the breast cancer world for 14 years I really thought that if I had a mammogram every year any cancer I got would be picked up in time to treat. Boy was I wrong. Stage 4 was a complete surprise to me.
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not quite everywhere. Multiple widespread mets, All through my bones lungs, internal lymph nodes, kidneys, thyroid. And yes still here thanks to two years of weekly taxol keeping me stable. I love that chemo
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There are a lot of things about BC that I didn't know before my own dx:
- I learned that there are multiple kinds of BC, and the kind I have (ILC) is hard to detect
- I learned that being early stage does not mean there is a quick fix and you just move on with the rest of your life
- I was vaguely aware of the risk factors listed by scrunchthecat – but never heard much about them from any doctor during annual visits, let alone during any BC "awareness" campaigns. I had four risk factors on that list.
- I was clueless that I would be put on a drug for at least 5 years, and that managing side effects would become a daily routine.
- I didn't know I would still have no energy, almost a year later.
- ORgal said it well – I learned too that people think you are fine/cured/over it just because you look fine. I'm so tired of hearing, "Well, you LOOK fine!" in that tone that really says, "What's your problem? Get over it".
- I learned that lymphedema is a risk for the rest of my life, even with only one lymph node removed.
- On the up side, I learned who my real friends are, and I made new friendships that I wouldn't have found otherwise. I learned about being my own best healthcare advocate. And it's an ongoing process, but I'm learning to stop worrying about pleasing everyone and obsessing about things I can't control, and live more in the moment.
Thanks for this thread, Muriel! Best wishes to you.
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Hi Kiki, Yes the side effects are a bummer and they don't get a lot of coverage in the information books we are given. Neuropathy isn't in my BC book which I was given when I got diagnosed. I have it in my feet and its quite unpleasant and some days are worse than others. My other SE if lymphedema. I only had the sentinel node taken out (ITC's in it) but I now have lymphedema in my arm and breast. I have to wear a sleeve daily and I also have to wear a compression garment across my breast. The SWELL SPOT (that's what its called) is a thick padded thing which makes me look huge. My husband calls is my AMAZONIAN!!!!!!!!!!!!!! Luckily we can laugh about it. I do agree with what you said about new friends. I have made quite a few and its really good to catch up with them on a regular basis and we can talk about our problems. Best wishes Muriel p.s. I almost forgot, I also have a seroma where the op was done. Usually the body absorbs the fluid around the affected area but my body likes to hang onto stuff.
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I love this thread. Excellent!
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I learned that as Chris Rock states in the U.S. we will never cure cancer, the money is in medicine. I did not realize that most of the research done is just for a medicine that will cost $10,000.00 a month for pills that will increase your life for three months. So sad.
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