Things I never knew about breast cancer
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This thread was a great read, so many things I can relate to. Sad that there are so many misconceptions out there and that they stick so long in people's heads.
I am currently dealing with the Lympedema issue and going to PT in the hopes of keeping my breast and arm from getting any bigger.
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Hi Kill the Cancer, Yes there are certainly some misconceptions out there and lymphedema is another one. I too have it in the arm and breast and I only had one lymph node taken out. The sentinel node removal is SUPPOSED to reduce the incidence of getting lymphedema right down to just a couple of percent but as I have already said, percentages don't mean a thing. If you are in the tiny minority it makes no difference so whereas before I would have been comforted by percentages, now I don't trust them at all. Love to everyone Muriel
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Re: risk percentages
My feeling on being given percentage based risks is that one can trust them , but someone will fall into the percentage of those who do experience a side effect or negative reaction. Wehave no way to know who those folks will be. Remember, a low risk percentage guarantees nothing to you as an individual. Someone will fall in to that 1 or 2% of whatever and there is no way of knowing if that someone is you.
1% of those who have ports installed will have a lung punctured. This is generally discovered on the x-Ray that is done after the procedure. I had my port installed and carried on quite normally for two weeks until an unrelated PET scan found a complete pneumothorax of my right lung. Turned out that my lung was nicked and acted like a tire with a slow leak. The chances of that happening were less than 1%! I completely trust the percentage based risks of port placement, I was just very, very unlucky. Risk statistics can be reliable as an aggregate but offer nothing to determine how an individual will do.
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You don't know much really until the final sx path. I started out with a biopsy saying I have a 2 cm tumour. Was sent for MRI with contrast and it said it's 4 cm. Well come sx, bs pulls out 7 cm! 4 cm then a cancer "line" had formed to a 3 cm making it a dumbbell shape that nothing caught. So hang tight until the final sx path before you ink in what's up.
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Another thing I've heard..........how can you have a recurrence when you've had bmx and have gone through all the txs you're supposed to?
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Absolutly, you can. They don't know why we get it - only risk factors, and don't know how to cure it. If they don't do the right chemo and/or you have an undiagnosed auto immune disorder, or cancer that doesn't respond to Standard chemo, the damage to your immune system can result in cancer growth. If you have Lobular cancer, standard chemo doesn't work well against it, for example.
Radiation damages your breast tissue. So you may need more surgeries to get a satisfactory result. More surgeries = higher risk of infection. Infection = higher death rate. But it won't show up as death by cancer.
More and more independent researchers are finding less is best. Know all you can about your type of cancer and various treatments before committing. You'll receive contradictory info, so invest the time learning about your disease. Get 2nd or 3rd opinions.
But the best answer to reoccurance is "I don't know" and no Dr. can do better.
And I never knew I'd have to do so much research and self-advocacy to keep myself from harm. I also never knew so many Oncologist's were ignorant on how to treat Lobular breast cancer
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artista,
You can have a recurrence or more likely a new primary because not every trace of breast tissue can be removed
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^^^ I thought that's what radiation is for. I got clear margins but micromets was found in the first sentinel node so I think that's why they are doing rads. Otherwise it was sounding like I'd be skipping rads when I spoke to the RO before sx.
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Artista,
Yes, rads helps toward that end, but there is no 100% means for total eradication or prevention of a new primary.
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Does anyone know if bc can spread during chemo? I mean it's not fully "done" until your last dose, well you hope..
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Sometimes chemo doesn't work so my guess is yes it can spread
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I never realized how it effects your emotions even 3 yrs down the road.. I was numb emotional going through treatment - surgery, chemo and radiation - never cried or worried but trusted the doctors... thought I did so well emotionally. Recently had a mammogram and when they called me to say I needed a Ultrasound -I was so upset I cried.. I now know I held those emotions in all the time.. Ultrasound showed what they think is a seroma and I have to have another mammo in 3 months... I never knew treatments and test go on and on..
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Artista28,
I hate to sound negative, as the odds are actually pretty good that you can close the door on Cancer for awhile after you finish treatment. But there is no cure for cancer. Hopefully, your Dr's have chosen the best course of action. 6 cm is large for IDC. No hormone therapy yet? And 1/4 lymph nodes means you need radiation, which makes me wonder about expanders. I went straight to implant, so rads would ruin my results. My nodes were micromets and research shows no survival benefit as I had 22 removed.
You'll need to be very vigilant for a long time to come, yet try not to let cancer keep you from living. Best of luck
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Leslie there is a big gap between your dx and surgery. What happened during that time
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I never knew how much a Bmx hurt! I never knew how much tissue expanders hurt. I never knew how much I would come to hate the word "discomfort".....it's called PAIN not discomfort. I didn't know that chronic fatigue would become my constant companion. I didn't know you can't sleep on your side after surgery, and I didn't know just how little sleep you get trying to sleep on your back. I didn't know my body "thermostate" would malfunction and I would be constantly too cold or too hot.
Most importantly, I didn't know how hard it would be to not let breast cancer define who I am.
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Leslie- It was a 7 cm tumour. Still have 2/4 more rounds of Taxotere left (had 4 round of AC before). End date for it is 3/1 as I'm on an every 3 wk schedule. Then CT scan to see about that nodule. Then rads. Then hormone of some sort.
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I learned from a couple of friends that IDC isn’t necessarily more “serious” than DCIS--both have Grade 3 and at least one will need a BMX. I used to ask myself “why couldn’t I just have gotten DCIS instead of IDC”? I don’t ask myself that anymore. I learned it is what is and you deal with what it is, not with what you wish it had been.
Christine, I too am dealing with LE. I have a great therapist at Evanston Hospital, but my Medicare-authorized sessions are running out, just as my symptoms seem to be truly labile (absent one day, almost stage 1 the next). Doing supine self-MLD this afternoon I freaked out because I felt a thickened area at the very top below the clavicle as I did the crosswise strokes from the affected side to the unaffected axilla. Spent all the rest of the day thinking doom and gloom, but now the thickening is gone. (Guess the MLD really does work).
So I learned that once you get bc, the worry-relief-worry-relief cycle never ends until you’re on your deathbed from something unrelated.
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Hi IamNancy, I too have a seroma. It was picked up after my first checkup. The mammogram showed the lymphedema in the breast and the ultra sound picked up the seroma. I really think truthfully that there are no guarantees for any of us. We just have to go with the doctors and hope they know what they are doing and we have to learn to live in the moment. Well that's what I aim for anyway. The emotional roller coaster is more difficult to deal with!! Love Muriel
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Marijen,
Best answer is physician stupidity. The Dr. I first saw was supposed to be one of the best in my area, and she wanted to use Femara to shrink tumors b/f surgery. I went along for the first and second monthly check, as both showed the ki-67 dropped way down and tumors were stationary.
The third check Dr lied to me about progress. The tumors had grown, but she told me she couldn't feel them. I got a paper copy after the visit, and sure enough, they had grown. Before this, during the appt. I told her I'd had enough waiting, and she scheduled my surgery 2 months away. Guess she didn't hear me.
I then learned her husband was the president of my health insurance Co, explaining why I was being put-off on genetic testing and more advanced imaging. This Health Insurance "Moda" has since gone under State supervision for financial mismanagement.
So I fired her and moved up to Oregon Health Sciences University. It was over 4 months from DX after I was seen, so they couldn't make things happen much faster. My results are far better than what I've seen from the other surgeon and glad circumstances had me switch.
Not happy there was a 6 month wait when highly contraindicated for multiple tumors in both breasts, but not that large.
And I'm wondering what's going to happen to my insurance.
Long answer, eh? That's why I advise everyone to be on top of their tx, and not completely trust their Dr. There's a lot of profit motive in Cancer. Not to mention, many diverse opinions
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murielwhite5 - thanks for your response - sorry you too have a seroma but I guess its more of an annoyance than a danger -at least that's what I hope... I loved what you said also --- " we have to learn to live in the moment" -- you are so right!!
Thanks friend - Nancy
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I learned that if you are getting a mastectomy with reconstruction your plastic surgeon will use cadaver skin to bridge the gap between your chest muscle and breast bone beneath the expander.
Then I learned cadaver skin meant skin from a dead body....
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Rock- Where did you hear that?
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nonononono! I don't want any cadaver skin in me! I really hope that's not true.
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Alloderm, the brand name for a commonly used dermal matrix, is derived from cadaver skin.The cells have been removed and collagen is what's left.. I think this is probably true of all acellular dermal matrix products.
https://www.realself.com/question/what-alloderm
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I have an Alloderm sling for my foob. Works great and I don't have any problems from it.
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What concerns do you all have about cadaver tissue
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Hi Everyone, Can someone explain to me in simple terms which tests pick up what? For example what does a PET scan pick up that a CT does not? What with mammograms, ultrasounds, bone scans, dexa bone tests, PET scans, MRIs etc, etc. My poor old chemo brain does not compute!!!!!!!!!!!!!!!!!! Hope everyone is doing well. Love Muriel
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Amstar, this comment resonated with me: "Breast cancer has taught me -- I CANT FIX EVERYTHING ---" I am a fixer by nature. I have learned to chill, but it has not been easy.
Good thread and how I wish more of this were common knowledge. Sometimes I try to explain to people, and usually get told that I am being negative and that early stage breast cancer is curable. I am seriously scheming to do the Komen walk without foobs and a black T that says "not dead yet!" I will have survived BC when I die of something else. And really, I am cheerful, active and optimistic, but I can't stand the way the facts are being glossed over.
My husband is currently being treated for cancer, stage 4. So, recently we were back in the chemo lounge where I was treated. A young resident was assigned to look after us. It came up that I had been treated for BC. The kid asks "when? I told him it was almost 5 years ago. So Doctor Junior cheerfully chirps that then I am in the clear. I was aghast. I am afraid he got a lecture. I told him to look up the conditional survival curves for BC (hint: they are not curves at all, just a steady, consistent risk of recurrence/death) and get back to me.
My MO tried to get me to have recon several times. The 3rd or 4th time he hassled me about it, I told him I was not interested in flap surgery. He agreed, and said he thought I should have TEs and silicone. I asked him if he had any idea what the failure rate is with that in a patient who has received extensive radiation. He didn't know. I asked him if he was aware that many PSs won't even attempt it in a case like mine. He had no idea about that either. So, he didn't just get a lecture, he got yelled at, with some choice words included, and then I ordered him to write on the front of my chart "NEVER ASK ABOUT RECON AGAIN," while I stood over him. He hasn't and we are still friends, which is to his credit
So, yes, you absolutely have to be your own advocate. You absolutely have to check the doctors, and that is REALLY hard. I am fairly smart. I am fairly edumacated. I can read and stuff. But, I have zero science background. Reading medical journals makes my eyes glaze over and my brain hurt. Trying to bone up on medical jargon and cancer treatments, while also going through high anxiety because you have to make major decisions really fast is no picnic. I would use google scholar, find what appeared to be key terms, then go to wiki to look up the terms (or medicines or whatever), then go back to google scholar to search on the most promising key terms. Completely exhausting and extremely difficult. 5 years later, my brain still hurts when I read medical journals. I can skim a bit faster, that is all. I was very lucky to have an immensely patient and helpful friend, who does know some of the science. She helped me get oriented.
I wish everyone joy, patience and resilience.
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Momine- Great post! I'm blessed that my docs are educated enough not to say/think stupid things about cancer or I'd be fired up too.
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