My (perhaps controversial) thoughts as a "newbie" to CA.
Comments
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Trill - the American Cancer Society has a website and catalog called TLC (www.tlcdirect.org) that has wigs, hats and scarves that are less expensive and cute. I have a friend who has purchased several in her battle with breast cancer and they are really cute. Again, take it one step at a time and wait until you meet with your medical oncologist until looking at what happens after your surgery. Surgery and recovery are the first things you can focus on!
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Keep in mind that you can stop chemo at any time if you start to feel that the side effects aren't worth it and many people have few side effects. I think you will do fine. You have a great attitude and are doing lots of research. Keep us posted.
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Another thing to keep in mind is that each of us is different in pain threshold. For whatever reason, I seem to have a high pain threshold and thus have a pretty easy time tolerating whatever happens. I even had a perforated bowel which is reportedly excruciatingly painful, that I barely felt. I barely feel injections, usually not at all, and never have numbing done. I've had 2 lumpectomies and 1 mastectomy and I didn't find them very different in terms of pain, recovery, etc. (The drains are irritating but not painful). I've had 2 breast reductions and didn't find that painful either. I've had a tissue expander inserted and never felt a bit of discomfort from filling the expander. I am very pale skinned but radiation didn't burn me. Got a little pink by the end. Chemo didn't really affect me much until the third cycle, except of course for the hair loss. I didn't get away with not losing hair!
So, remember that your experience can be very different from others and it might be more positive than you fear. Except for surgery, most treatments can be moderated for unacceptable side effects as you go along. Emend is great for nausea, I had a couple of infusions without it and there's definitely a big difference.
Here's to hoping that you have an acceptable time in treatment.
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Trill - get myofascial massage, PT, OT, etc... for the adhesions, and it seems if I miss a day stretching, I'm right back where I started, even with stretching, it just keeps it semi ok.
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Hi Linda KR and all others following this conversation thread....
You know what someone said to me today, a person who "sorta" knows about this stuff? She said the life expectancy for this is 5 years...It's been haunting me ever since...when I think that, well, I'd be 77 and that's a pretty good span I feel not too bad about it...but then five years will sound like so little..
Anybody who wants to chime in on this is welcome---I welcome any assists over this hurdle...or other perspectives...right now I'm Alice at the bottom of the hole, holding a bottle that says Drink Me and that I know will make me small...
I know that this is tiredness talking, and it's been a very busy week, but it's talking very clearly and coherently...
I called Hopkins this a.m. and told them I want to get scheduling underway and want to set up for a double mastectomy...the doctor who's doing this was
t at another hospital or branch today so they will get back to me Monday on it. This gave me the rest of the day to go get a turkey and fixings for Thanksgiving with family and I came home to a call from this person and we chatted and that's when she came out with this prognosis...
And I then ate half of a semi-sweet chocolate baking bar...
trill
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Trill1943,
Don't listen to friends who "sorta" know things. The mostly "sorta" don't know things.
Safer to listen to us, even though we aren't your doctors. Still better, usually, your doctors.
It appears you have early stage BC. Even triple negative is very treatable. If it is confined to your breast, surgery may completely cure you, though chemo adds an important safety net if the cells are floating around your body. No way to know whether or not this is occurring. The majority of people with early stage triple negative are alive at 5 years. Most have not had a recurrence, nor have mets. Of these who reach the 5 year mark, they are fairly certain to continue to be cancer free, unlike those with ER+ cancers.
Have you dropped into the triple negative forum? This group could be very helpful. I'm sure you can find some long time veterans who have passed the 5 year mark with little drama. I know someone who was triple negative and had cancer in her nodes and has lived cancer free for 12 years.
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Your 'friend' is 'sorta' a jerk, and definitely wrong. The 5 year statistic is about ladies diagnosed at Stage IV (and many at Stage IV live long beyond that statistic too). Here is a direct quote from the National Breast Cancer Foundation about Stage I Breast Cancer (the bolding is added by me): "Breast cancer at this stage is very treatable and survivable. When breast cancer is caught and treated at Stage 1, an early and localized stage, the 5-year survival rates are about 98%."
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PS: if your chocolate bar was at least 70% cocoa, it is actually GOOD for you. 2-3 ounces a day lowers blood pressure (and I am not even making that up!).
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5 YEARS? no wonder you dove into the chocolate. Maybe she meant 5 years on a average with no treatment? Or 5 years until your small risk of reoccurance drops to almost nothing? Because it's absolutely not true that 5 year survival is the norm with treatment. Sorry. Not to be unkind, but your friend is completely mistaken. And, what a horrid thing to say! Yrrrf. I'm sorry you heard that, but it's just not true.
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When you are diagnosed with cancer, suddenly everyone you know is an expert.....NOT. ...or knew someone that blah, blah, blah, or that had no treatments and just changed their diet - went from stage IV to cured, or took this supplement or. died of this treatment or .... I really don't know where people get their info.
OK done ranting. Check out these sites.
http://www.breastcancer.org/symptoms/diagnosis/prognosis
http://www.cancer.org/cancer/breastcancer/detailedguide/breast-cancer-survival-by-stage
http://seer.cancer.gov/statfacts/html/breast.html
I have no clue where all of these people get their info....another place not to go is the media. All sensationalized and taken out of context, ok maybe that was a slight exaggeration, but...?
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Trill - for many of us, our diagnosis of breast cancer is the first time we have been given a percentage for living ten years out. Many on this forum have reinforced the fact that our percentage is either 100% to have BC reoccur (if it does come back), or 0% if it doesn't come back. Percentages really don't mean a thing. There is a way to turn your thoughts into a positive direction in your life though.
I decided that I was going to throw everything at this cancer that I could, and then I was going to not give it any power over me. I questioned myself about if I only have ten more years to live, what would I regret that I didn't do? I gave myself the power to say "no" to things that I didn't want to do and I now stand up for myself. And I challenged myself to accomplish things that I had been putting off and wanted to do. I had been collecting genealogy information on my families for over forty years and it all resided in binders that would mean nothing to anyone else but me. I started forming it into books for each family and distributed it to cousins on all sides of my husband's and my family. It took me a year to write the seven books that totaled over 4700 pages but I finished the task. Without my BC diagnosis, I don't know if I would ever have been motivated.
Have you made a family cookbook that would be appreciated by members of your family and friends? Have you labeled photographs with names on the back? There are so many things we hope to get around to doing "one day." I decided my one day was now.
All this is stuff you can keep in the back of your mind when you are tired of thinking about cancer. Your writing is beautiful and I am convinced you have books in your that you need to write and share with others.
Hugs!
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Hi doxie, ruthbru, little blue flowers, LindaKR--
I knew I could count on you! Thanks for leveling my boat. Steadying my ship. Trimming my sails
Wait a minute. What am I doing with all these maritime/marine metaphors? My lack of sincere interest in sailing is matched only by my lack of knowledge about it.
(In this person's defense, maybe it was that the tumor's a Grade 3....) (And I know you're gonna say she's still "sorta" not a nice person....)
This is puzzling and maybe you could help me understand:
I was reading a report, think it was comparing lumpectomy vs mastectomy--one of those biggish studies--and it talked about their efficacy, outcomes of the ladies, etc. But there was no mention of the women having or not having systemic treatment--chemo. How could that not figure into results and their conclusions? I didn't get that.. Or maybe it was there in bold black and white and I was having my own little personal Fog of War moment...
t
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I trust pubmed. Here is an article about chemo and TNBC. I forgot how large your tumour was. Care to mention that again so I don't have to go back in posts?
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H WinningSoFar--
Many thanks for your thoughts. I realize pain so much hinges on the person's makeup and can't be generalized.
You're so lucky to have a high pain threshold! I think perhaps, um, 99.9% of the entire human race since there WAS a human race would gladly trade places with you.
My own threshold fluctuates depending on the candy or treat on offer. Sometimes mom, when we were headed for a dentist appointment, especially when she knew that my dentist was going to be rappelling into a molar crater that day, promised me a stop at a local bakery shop for glazed donuts afterward. This was back in the day when they gave quick-to-wear-off novocaine, the process was watery, the drills groaningly slow.
My dentist had what I think HE thought was a very advanced view on giving a person a feeling of control and liked to plop the heavy controller in my lap, granting me the power to continue or end the pain by cutting it off completely, which I invariably did, but then right away barked at me to turn it back on (is there a special psychiatric category for this brand of sadism, or would it fit in nicely with the one occupied by Joseph Mengele?).
Maybe he was thinking that the sense of control the controller offered would be beneficial for me, but didn't figure that I'd pretty much always want to control it OFF.
Mom's promise of a treat helped me bear the dental sessions a little better, although I don't think either of us wanted to connect the dots and out of this detect the ratio of bakery shop trips to dentist trips. Although this led to many of my molars being shells, I think mom knew that a life spent connecting those particular dots would not have been one worth fighting for now.
t
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Hi dear grammakathy--
What a great post. I love your attitude. This is that one day. And, wow, what an accomplishment with those 4,700 pages! Whoop-de-do! I know your family thanks you.
Yours is is such a wonderful way of looking at it. Thanks to this diagnosis, I've cast my mind to that little tiny flash drive holding the book I've been holding inside. Now there's every reason to finish it. If this had not happened to me, I know I'd keep putting it off, as I've already done.
I've never been much of a fighter. I'm one of those in the background scribbling notes, watching. I want to defer to the authorities-that-be, to please them and make them happy by accepting what they're telling me. And if i meet an assertive person I tend to cave to them. I think that's part of the reason I never married. I sensed that I'd allow myself to be eternally compromised and dominated by whatever guy I was dating and getting serious with. I didn't want that. But didn't know how to break that cycle. The only way was to categorically say no.
I have a ways to go, but am at least on the path.
Thanks again,
t
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Hi wrenn--
It's 1.2 cent. They said I'm a Stage 1.
I see at the bottom of all posts here that there's a breakdown of everyone's tumor, grade, surgery, chemo--etc. I should add to my profile the info I have. Will work on that.
t
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Grade 3 means it will most generally respond very well to chemo. Lower grade cancers may not respond as well. Nope, survival after 5 years is still to be expected with a grade 3 tumor. That's what mine was.
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Trish, your tumor is smaller than mine, though a grade more aggressive. FWIW, my seromas aren’t painful, just make my breast “sensitive” (nowhere near as sore as both were during my first trimester of pregnancy) and my right one bigger than I’d like it to be (I’m very busty to begin with, always have been--was already in a C cup at 12). No skin issues at all with rads--yes, it’s red but not irritated. At 72, it’s very likely they’d skip rads altogether with a tumor that small, negative nodes and clear margins. I really doubt I’d have done as well with mx, reconstruction or not. It’s been 21 years since I’d had any surgery other than orthopedic, and though I healed from lap. cholecystectomy and c-section without incident, I was younger and healthier then.
Might also be a good idea to double-check your cardiovascular health--lipid profile, BP, any arrhythmia issues (EKG, which they require pre-op no matter how extensive the surgery), carotid Doppler, valve and ejection fraction (echocardiogram, both it & Doppler totally noninvasive) before deciding on chemo. Some cytotoxic drugs can also be cardiotoxic, which can be significant if you have or are in danger of having heart disease. How is your immune system and are you anemic? Chemo does damage both white and red cells, and the biologics like Neulasta, Procrit or Neupogen do act on your bone marrow and can cause bone pain. Steroids given to reduce symptoms can also be immunosuppressants. I’ve had friends younger than us hospitalized for systemic infections after chemo, despite those leukocyte-booster drugs. How willing (and able) will you be to avoid crowds, little kids (prime disease vectors), etc.?
OTOH, if you do choose chemo, and get through it ok, once you pass the 5-year mark your survival might outlast that of those of us with ER+/HER2- tumors--if you do get a recurrence, it would be amenable to chemo but tumors such as mine wouldn’t.
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They probably won't do radiation if no lymph node are involved and you have a mastectomy, just chemo. My friend was diagnosed with triple negative, stage 1, grade 3, 4 1/2 years ago, she's going strong - no evidence of disease, etc.. she had a unilateral mastectomy and chemo.
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Trill - one thing that hasn't come up is what happens if you have comorbidities, like diabetes, heart disease, etc.... Those can make a difference with your treatments to. So if you have any other health issues, make sure your docs know them all. Some of the treatments can be hard on your heart, and the pre-meds they give you can make a mess of your blood sugars.
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Hi ChiSandy and littleblueflowers--
Wow. Lots to think about.
Chemo does bother me--but then guess it does everyone. Glad to learn these details.
My health is fairly good--I'm overweight--six feet tall and this hides it a bit but it's still there...well, I'll lose 2+ lbs. with the double mast at least. Hate these jugs! I have hbp I take med for that losing the weight I plan to lose might bring down, mild fibromyalgia I take Lyrica for, and sinus issues (use MyPurMist, which fyi is a wonderful device). The last echocardiogram I had was in 2011 and was ok, chest X-ray ok, bloodwork in 2011 and 2012 (sinus surgery) were ok. But will of course get more done before surgery.
I've heard about crowds, kids, people who've been receiving vaccines and would stay away during chemo course. Am reading up on foods that boost the immune system and have a stress-relieving subliminal cd I listen to at night. Will certainly ask about the chemo I'm getting and its side-effects.
Thanks again!
T
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LindaKR--
Your friend sounds so close to my numbers, etc. That's interesting. Glad to hear she's doing well.
I know about the comorbidity concerns. Overall health except hbp that I think losing weight will help, sinus issues, and mild fibromyalgia ok. Will discuss all this with docs.
Gracias!
T
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My breasts were 5 lbs. each. :-) One of the reason I chose mastectomy over lumpectomy was to avoid radiation.
I am working on weight loss and by just dropping the first 25 I was off blood pressure meds and blood sugar was normal. I lost a bit more (still 244) and fatty liver is gone so losing definitely makes a difference. My oncologist wouldn't give me adriamycin because of effects on the heart because my brother had had a heart attack. Make sure you know the risks of each drug they propose and take your time deciding.
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Just jumping in to restate what someone else said; a 'good' thing about grade 3 (which is what I had too) is that since the cells are fast growing, they are the most effectively killed off by chemo.
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My RO told me that the trend now is to make post-lumpectomy radiation totally optional for women over 70 with early stage, node-negative small tumors with clean margins--leaning toward recommending forgoing it. Chemo after 65 is a matter of balancing the benefits of killing aggressive tumor cells against the risks--especially with comorbidities. A lot of the decision also depends on your life expectancy notwithstanding the cancer. Hate to say it but the ball’s in your court, and only you can decide what and how to play.
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Hi ChiSandy, ruthbru, and wrenn---
Wow, you guys are so knowledgeable and helpful....
I spent the evening scrolling through photos of gorgeous gals in wigs on a wig website, going through the bazillion books, pamphlets, booklets, and brochures I've accumulated, reading about drains, pj tops with pockets that I should turn inside-out to stick the bulb thingy into---with double mast I'll have two of these little buggers--and how to prep for surgery and then home stuff.
You know, wrenn, I said I'd lose two pounds or so with the removal of the bs but I think they're probably more like yours, closer to 5 each, or at least 3. I put my hands under them and jiggle them and really kinda find them a little grotesque, like the boobs of a carnival sideshow attraction: "Trill--The Woman With the Bouncing Tits!"
I want to be 14 again and able to sleep on my stomach and not have to contend with these water bombs. They aren't dense as they were in earlier mammograms; now the radiologist says something like "they are uniformly not dense," which probably means they are all FAT! Dr Jacobs said when she cuts she follows a certain path and then the boob just kind of falls away (like jello rolling out of a mold...my words, not hers).
Your progress with your weight loss is great! Hang in!
I lost 30 lbs a few years ago and am still heavier than I should be but at least didn't gain those back. It's truly a lifetime thing.
They should have a group called CA --Candy Anonymous.
A guy stands up and goes to the front and says,
"Hi, my name is Charles and I'm a Bit-o-Honey addict!"
"Hi, Charles!"
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Ruthbru, I like knowing that the more aggressive cells are the easiest to kill off.
I told the Drs this week that it scares me not getting the lump out asap--the idea of those little fast-booking outliers heading off to the Wild West of my bones, stomach, lungs...a creepy feeling that made me itch.
They smiled and said that in a case like mine it's usual to have a little time between diagnosis and surgery and not to worry, but inside I was thinking, "Uh-huh, and I bet you're never had cancer, have you?"
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Trill, my lump was 1.5cm on June 15th and the same when removed on August 16th. I am also a grade 3. Triple neg goes easier on older people for some reason.
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Wrenn--
Ah, the joys of aging! Glad to hear yours was a slow-grower. Hope mine's the same.
Have been up all night--just not sleepy--balancing my checkbook and going through four months of old Walmart receipts. Fun!
t
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Hi all----
Just wanted to drop a note to those who've come to this topic.
If anyone has reason to be thankful this year, it is I!
You--and this site--have helped me learn, cope, vent, be jokey (when needed), sort, decide, and move forward. I so appreciate your being there.
I wish you all--and everyone on this great site--a very joyous Thanksgiving!
love to you,
Trill (and Pantaloon)
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