Things I never knew about breast cancer
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Amstar, thank you for your eloquent post from a husband's perspective. You and your wife are showing what bc cannot take away.
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Hi everyone out there, I never knew that you could have both breasts removed and still get breast cancer as they can never remove every last breast cell and it only takes a little left over and cancer can take hold there. So many people believe that breast removal will give them the security that they seek only to find it was a cruel joke!!! Take care everyone. Love Muriel
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I never knew that being diagnosed within 5 years post partum carried a much more unfavorable prognosis.
I never knew that just ONE case of ovarian cancer and NO breast cancer on both sides of your family still meant you could be a BRCA carrier... and the only one out of all your cousins and siblings, as well.
I never knew that you don't have to have a palpable lump to have BC in your lymph nodes.
I never knew that breast cancer treatment can last 11 years...or more.
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I never knew how hard it would be keeping to myself thru all the possible and probable recurrence tests. I never imagined though had an inkling if I were to get one more prayer bracelet or pink bear that I will send the damn thing back and I won't be sorry this time around.
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I never knew men could get breast cancer. But, guess what, men have breasts too.
I now know that men have a poorer prognosis since we are diagnosed later.
I know that until all the pink propaganda disappears, men will continue to believe they are immune from bc and their doctors will send them home without a scan.
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I never knew that lumpectomy could possibly make the affected breast larger than before
I never knew that while having just an SNLB carries a 2-6% risk of lymphedema, adding radiation (even if the nodes aren't radiated) raises the risk to, not "by," 15-25%, same as with axillary dissection.
I never knew that darn near everything--even texting and typing--can be an LE trigger.
I had naively thought that all cancer results in weight loss, and that only chemo can cause hair loss. Never knew that a drug I'll need to take for five years might make me an arthritic, balding, fat old lady with hot flashes I never had in my fifties. (Hoping I avoid those SEs but know I will get at least one).
Never knew that, according to Dr. Google, any food or beverage remotely worth ingesting will cause recurrence. (Hoping that is somewhere between hyperbole and flat-out bubbe-meisser)
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ChiSandy...I have breast LE so my lx did make my breast bigger...combined with rads and my previous BA it's a full globe that sits 3inches higher than the other. I now sometimes wear padding on my "good" side.
I never knew this process could go on and on. Stereotactic biopsy scheduled for January 13th, MRI scheduled for January 14th. BC is mentally exhausting.
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ChiSandy, are you sure about that LE risk after radiation? I know it increases risk, but I didn't think to the same level as axillary dissection.
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I didn't know until after I was diagnosed that you could have Breast cancer with no tumor found in the breast. They searched high and low and never found a tumor. Two different hospitals with multiple CT scans, MRIs and ultrasounds. I had just had my yearly mammogram and did self examinations all they time. The mammogram noted a few "mildly" enlarged lymph nodes -- I was told they would review again in 3 months or if I noticed a significant change to come in. Within a month a lump formed under my arm and then biopsied and dx stage 3A with 8/18 nodes after ALND. I also didn't know that without a lump it is not recommended to get a Mastectomy or lumpectomy So with stage 3A and 8/18 nodes, I still have both breast and am really scared. I choose not to get a Mastecomy as the reoccurrence with whole breast radiation was low.
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Ladyb, you might want to do a BCO search for "occult primary" and read those discussions.
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I'm sorry, but I don't believe that figure IS correct for the risk of LE after radiation. My RO and I had extensive discussions about the risks, including LE, and even with nodal radiation the numbers never approached that figure.0
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hate to say it but not only can you have recurrances, but you can have a completely NEW diagnosis in the same breast that has its own DNA and characteristics! i was diagnosed in 2000 had lumpectomy with clean margins, 6mos of CMF chemo twice a month, 5 wks of daily rads, 5 yrs of tamoxifen and then BAM, late 2013 same breast had brand new, different bc. This is a life long journey and if hit by a bus at age 95, then i guess they cured us!
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The best oncologist in the world can miss a < 1c lump half buried in muscle. Be your own aggressive advocate and champion. It's ok to rattle some chains for some extra testing. As nervous as it is waiting and worrying, knowledge gives you more options now. Waiting will slowly but surely - take those options off the table quietly when you are not looking
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Good Evening,
I love this thread! I have enjoyed reading through all of the comments and thoughts. Very informative that (1) I'm not crazy and (2) yep I'm still not crazy!
I was diagnosed November 12 after a lumectomy of stage 1 cancer. Three small tumors. Two removed, both invasive both positive with er+ indicators. The next step, genetic testing. I never knew anything about genetic testing. Never heard of BRACA. No family history. Test were negative. Only early menstral cycles, that's it, nothing else... Never ever ever knew this was a concern for "me."
Four days post op of a double mastectomy, can't describe the discomfort. Looks like something out of a horror flick. ( if you can't laugh, what's left?
I had really nice breast.... Never imagined they were "sick." Never knew a dimple was a sign of breast cancer.Went for my recheck yesterday and received the "good news". Lymph nodes are positive, I'm stage 2. Drains come out tomorrow. Never knew I "could" change drains. Staples come out the 31. The same day I get to schedule an auxiliary lymph node surgery for the new year!
At that point I should have all my information together to finally see my oncologist, Hear the plan. Finally get all the pathology reports together and see what the whole picture is. Radiation seems eminent along w hormone receptors and tomoxifin. The jury is still out for chemo....
Never knew upon diagnosis it could be so different with each phase and step of they way. Never knew there were so many angles to approach cancer. Always thought it was more of a one size fits all.....
And now I go back to Christmas movies and presents.... REALLY not in the mood this year!
Praying for a good nights sleep,
Elizabeth
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I didn't know that "cured" is something people and doctors say about breast cancer but there can be stray cancer cells in my blood and lymph system.
I also didn't know to ask for the written report from the radiologist after my yearly diagnostic mammograms. I just accepted that the form letter stating "nothing was found and to return the next year" was the entire report. My IDC was noted a year before my diagnosis but listed as not a problem. Nothing would have changed but I would have been more prepared for my diagnosis.
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ladyb...I too am one of the few "occult" primary gals. Never found any tumor, but like you had 11/12 lymph nodes positive. Stage 3C,Grade 3, isn't that just special ha ha. I had the axillary node dissection, 4 rounds of TC chemo and 28 radiation treatments. No breast surgery, the tumor board agreed no reason to remove breast without disease. My surgeon explained it this way...at one point there was a tumor in my breast, but it spread to my lymph nodes and then died off in the breast. I have tried all of the hormonals, tamox and all 3 AIs...all with unbearable side effect, the latest being extreme fatigue and shortness of breath. After a myriad of tests on lungs and heart (all normal) my pcp has come to conclusion it is the AI causing the problems. So for now I am not taking anything, will have to visit with my onc shortly because I have numerous, tiny scattered sclerotic lesions throughout my pelvis and lumbar spine so I need something to keep them at bay. Hopefully he will have some suggestions that I can function with. Working full time and trying keep house just isn't working so well with the fatigue thing. Hoping you continue to keep on and feeling well. I wouldn't push for the mastectomy at this point. Careful watching is my plan for now, though I do wish sometimes that they were just gone to that worry was gone as well...take care. Mimi
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Hi Eliz1973, I live in Nashville and had a very similar experience. Please post your Oncotype score when you get it. Good luck!
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Hi Everyone out there, Really glad that this thread is proving popular. Its good that we learn from each other. Best wishes to you all.
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Lets see, since most women, like me, have no family hx of bc, and the numbers of women getting bc, at younger and younger ages, is going up and up, .....I guess ENVIRONMENTAL CAUSES must be the culprit!
God forbid we complain and cause a decrease in business and commerce as we ask for a world that is free from poisons, toxins and Xenoestrogens.
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It's an excellent thread, Muriel. Thanks for starting it - and best wishes for a heppy Christmas.0
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hi marijen.. I am new to this board or any.. Trying to educate myself through my fellow warriors. Not sure I'm getting a full picture from my onc. Not very much info coming my way other than their recommendations but none of the why.. I see you have opted not to have chemo or was it that your onc didn't suggest that you should.. Do you mind sharing your specifics?
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Thank you Marijen.
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I had a sentinal node biopsy be positive, then had my arm twisted to go back and chop out some more nodes. I don't feel safer, and now I am having early signs of lymphedema 3.5 years out, with slight swelling of my fingers, rings getting tight, and aching , nearly constant pain in my hand and arm. I deeply regret letting them go back and steal my lymph nodes. Seems like in reading these boards lots of women get reoccurrence right in the scar area where they chopped out vital bits. Seems that stray cancer cells linger in the fibrotic scar tissue and are not erradicated despite chemo and rads. Like I said, I don't feel safer, and the terrible joke on me was that I thought my Lymphedema risk was mostly behind me at this point.
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I learned that mammograms are nearly useless if you are a younger woman, I had 5 useless mammo's that all said I was fine. Found it myself. After the biopsy, had an MRI to get the size. Was told it was less than 5cm. Found out after uni mx was actually 11 by 9 cm. Yes that was not a typo, it was 11cm x 9cm, stage 3a. ILC does not show up, but looking at this thread, I learned that IDC doesn't show up on mamo's either quite a lot. They should put this posting outside every mammogram center in the country, then women would have the fair chance, we all deserve to make a fully informed, accurate decision. I learned that mammograms and MRI's are nearly useless, and inaccurate as well. Can't trust any of it. "Suits involving breast cancer are the most common cause of malpractice litigation in the United States " I certainly didn't know that, used to believe the pink ribbon nonsense.
http://www.thedoctors.com/KnowledgeCenter/PatientSafety/articles/Getting-Sued-for-Breast-Cancer
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macb04, thanks for the link the list is long! And we have seen all of it happen here. Very disheartening. What? Do they think they are doing us a favor with 50,000 dying every year.... smh
This list is exactly why we need to stay on them and demand their attention.
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The statistic of LE risk after radiation being 15-25% came from an LE site, Lymphedema Education & Research Network. Maybe it’s an outlier. I will find out more on Tues. when I have my appt. with NorthShore Evanston Hosp.’s LE specialist. My cording & forearm LE seems to either have disappeared or be in remission (I don’t have the pain or knot when rotating my outstretched forearm--at least not now, but I am still concerned by the sheer size of my mammary seroma in the radiated area and want to rule out truncal LE or learn what I can do to mitigate it).
But one incontrovertible fact I didn’t know till I got dx’ed with bc is that one is never out of the woods when it comes to LE risk--it can occur decades later. Hence my “fashion statement” of a MedicAlert bracelet warning against needles & BPs in my R arm. (I have since added three not-so-little heart-shaped charms, one for each of my antibiotic allergies. Ugh--makes me look like I have horribly tacky taste in jewelry. Could wear them all on a neck chain, but that also clashes with other necklaces. Wish Pandora had engravable Medic-Alert charms).
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I think that until you are standing on the threshold of breast cancer, there are dozens, if not hundreds of things you don't know. Then, in the emotions that swirl around a dx or suspicion of bc, it is not always possible to learn everything in a timely fashion.
Neither diagnostic tools, nor treatments are fail safes, and while we need to demand that the scientific and medical community do better, we must face the reality of today's limitations, but keep an eye trained on the future.
We also need to keep in mind that each of us view things through the lens of our own experiences. I had, and still have, wonderful, caring medical professionals at my side (I did change mo's early on when I felt he wasn't the one for me). My highly skilled and irreverently funny ps, made me learn about all types of recon and was very honest about possible outcomes. The result? One step implants that look and feel as close to the originals as possible. After it was discovered (shortly after bmx) that I was stage IV, my new mo and second opinion mo brainstormed on tx plans, gave me pros and cons and left it up to me.
Over 4 years out, I remain on my first line tx and have been NED since my bone met was radiated. Since my experiences have been positive (well,as much as a stage IV dx can be) , so is my attitude toward the type of care and medical professionals I have chosen. Had it not gone this way, I probably would not have such a positive attitude.*
*Lest it appear that all went perfectly, I did have to have one nipple removed due to insufficient margins and I was in the 1% who experience lung puncture after port placement. The irony is, I never used the port for chemo because I received the stage IV dx shortly afterwards. Am I mad at the doc who punctured my lung? Nope, it was a known risk.
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I am so glad this thread was created. I thought that I was crazy and that my journey was just different. Now I know that mammograms don't work with dense breasts and sometimes just don't work. Also, it just seems to me that doctors really push recon and that some women don't even know that they have to be exchanged and no, you will not have sensation. Geez.
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A tumor the size of an orange can be non-palpable (not felt by me, husband, or OBGYN during manual exam), and undiscovered on an ultrasound (everything looked the same because the WHOLE THING was a tumor).
IDC tumors can be like a spider web (hence the non-palpable part) and not a hard mass.
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Hi Everyone, Yes the cancer can certainly be sneeky. Too many assumptions are made like, you are too young to have breast cancer, Its just scar tissue. Nothing is showing up on the mammo or ultra sound so your okay. We really need to be our own advocates and get everything checked out. Best wishes to you all Love Muriel
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