STEAM ROOM FOR ANGER
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Speaking of side effects, I remember when I was 15 years old, HORRIBLE period cramps, and my mom took me to the doctor and he put me on birth control pills. That was in 1975. We didn't have the Internet, so I don't know why I knew anything, but I asked, "Aren't these bad for me?" He said, "Millions of women are taking them without any side effects." I remember being reluctant. I -- at 15 years old -- reluctantly took them...for 15 years until I had a hysterectomy. And now this. Lots and lots and lots and lots of people my age with breast cancer. Just a thought.
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MO-Beth, you sound like me. I had the worst cramps from about 14 years old until about 30 years old. My mother always thought I was lying or being over dramatic. I went on birth control in my early 20s but I still had some wicked periods. I had my first child at 33 years old and when my mother asked me how painful my delivery was. I said I've had periods with more pain she almost cried. I tried to tell my doctor and my mother but was ignored. After childbirth my periods were better. I love being postmenopausal.
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I had had an AOL account since 1996. It got hacked. Lost all of my contacts (after they kindly sent out an un-openable email to all of my contacts) I own a business. I got hundreds of emails and dozens of phone calls asking about that attachment. Had to regrettably dump AOL. Went with gmail. I loved AOL. Kinda hate gmail.
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Meow, my cramps went away with the birth control pills...yay! I had my daughter when I was 25. Most of my friends had natural childbirths. (It was the 'thing' then) They all did fine and they all had at least one child afterwards. I thought, oh, I've been through period cramps...how bad could it be? SO I started out thinking I was going to have natural childbirth...NOT. I was induced and I had two epidurals in 6 hours. Vaginal delivery. Only had one child. Seriously...because of the pain of childbirth. I'm a gigantic wuss...
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Pardon my ignorance, but what is ‘old lady cancer’
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Egads, that is what I want to know. I once heard that I had old lady cancer because ILC typically shows up in the 60+ crowd. Now I am not sure if that term is also being used for hormone positive.
I hate any mention of being associated with an old lady and so does my 80 year old mother, longing to be forever young. And especially hate cancer. God we need a cure.
Come to think of it young lady cancer sounds equally bad. I think our BCO male friend traveltext wouldn't want either term.
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Meow, I'm shocked! I had no idea that there was an 'age label' on ILC (or any other type). Wow, that's so wrong on so many levels. First and foremost, cancer never ever discriminates. Second, age labelling anything suggests a negativity towards a particular group of people, as if their 'value' is diminished, and that seniors getting cancer is to be somewhat expected and reasonable.Third, why 'lady', geeze, do we get the blame for everything? Wow, just wow.
Thanks for enlightening me.....and yes indeed, we need a cure!
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Through this whole process (MS for 30 years, BC for 4 years), I've learned two things about doctors and the medical system:
With side effect, you are TOTALLY on your own.
With insurance issues, you are TOTALLY on your own.
Some people here have been lucky with doctors who are willing to at least listen to se issues. My former MO thinks side effects are in the patient's mind. Brought on by stress, etc. Thus, former MO.
Meow, my DH also likes to talk about all the housework he does now. I did EVERYTHING for years with a full time job and a child. (He also tries to claim he did house work then. Silly man.) I just wish I had known all the sighing and complaining techniques he uses to elicit sympathy while doing said housework. You mean you don't have to just grin and bear it? Keep silent when he gets up from the table, not even taking his dishes to the sink? Not say anything when you drive into the garage with a trunk full of groceries and a baby in the car seat and he does not move a muscle to help you? I didn't know you could claim a headache and get takeout. Just did not know.
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Meow - WTF. I *too* hate being associated with being an old lady!! (I cringe when someone calls me "ma'am" but already had my vent on here about that - LOL)
Jaycee and Meow - My DH drives me INSANE. He works from home. I commute 50 miles to work and 50 miles home - five days/week. And, every stupid Saturday or Sunday - without fail - he complains about "how dirty" the house is. He's the one making it more dirty than I am - because he's there - A LOT more than I am. And, has more TIME to clean it!!!!
Then after he cleans something - I have to hear about it - over and over and over again - like he wants a medal or something.
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Egads, in this case, my "old lady" cancer is Luminal A—slow growing, most often occurs in postmenopausal women. When it does occur in pre-menopausal women, it is often identified as being a fibroadenoma—which is exactly my situation (I'm still premen and shy of 50). My mass was first identified in 2014 and only in 2018 was it biopsied and dealt with. There is at least one book that specifically says it shouldn't be overtreated, because it is so very slow—killing a fly with a nuclear bomb. I'm using the term ironically, but I can certainly see the potential for insult and I'll take care.
Thank you all for confirming I'm not wrong to be irritated though! I felt like my RO (who I met for the first time yesterday) was saying all the right things ("we're partners!") but completely glossing over anything but redness. And maybe a "little fatigue". And that LE isn't a concern because she's not going to radiate them. (Um, really? Not at all? That is not how I thought that worked, so why wouldn't you clarify my misconception?) So my advocating for myself felt more like being gaslit.
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Chelsea - My comments weren't levelled at you but more at the label, so I hope you don't think I was sounding off at you in any way. I'd never heard the term before and it took me by surprise. I do see the irony. I've been guilty in the past of using 'little old lady' phrases when referring to all sorts of stuff, like knitting, walkers etc., which is crazy disrespectful, young people also knit and use walkers. I guess as I age I could have grown more sensitive to it, or maybe just more accepting of every person being vital from birth to the grave. I try not to generalize, but probably still fall into the pit occasionally.
Yes indeed you do have a right to be annoyed. Like I said before, Baaaaaaaa. You should make an appointment with your RO, telling him/her that you have things you need to discuss, then go in guns flaming lol! My MO once said 'wait until you get on an AL, I don't even want to tell you how bad it is' So I reply with 'actually I do want to know'. She left the room for something, came back and carried on as if the conversation didn't even happen. Back in those days I just grew wool and started baaaaing. I hope you get what you need from your RO very soon!
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Egads, oh, I didn't think it was personal! No worries! Just giving context—it was a good question, I'd been using shorthand terminology.
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Oh I know, you were not labeling no worries. I have heard others on this website say their oncologist used the term "old lady" cancer when describing it to them. I am sure it is not in their medical lingo and probably is a hang over from old school descriptions.
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For me it doesn’t matter if they use the term because that’s the way I feel I’m treated. I had an MO that left the room and didn’t return at all! It’s just unspoken.
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I am feeling much better since my fall the medicine seemed to get me thru yesterday. I think I expect too much from myself. Like I want to have all the energy I had before any of this stuff occurred. I just can't help feeling bad that I am not as useful a partner I guess. I need to acknowledge that I am not being lazy just taking it easier. I am sure my husband is frustrated it takes him longer to fix stuff around the house. I made a comment to him, I regret, that this was the first time I ever had to call a plumber to fix a problem. Husband usually can fix electrical and plumbing issues. We are getting older and shouldn't be ashamed of asking for help.
My upbringing has always been if you want something done right do it yourself, it is almost a guilt we punish ourselves with. Intellectually, the best course is to hire help when you need it. It isn't smart to hurt yourself over age 60.
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"old lady cancer". I was diagnosed at 35 after spending months trying to get someone to take me seriously because "people my age don't get breast cancer". I often wonder how much better off I would be if I was diagnosed 7 months earlier.
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Dancing, my DH announces his ToDo list at the beginning of the day and then all he has done at the end with updates during the day. That's why they don't think we did so much before cancer. Because we never announced it.
Now for my dumb question: Chelsea, what does the LE in your post mean? (I didn't know what old lady cancer was either.)
And for some reason, all this made me think of my lymphedema. NO doctor, not my surgeon, not my MO, not my RO, ever mention to watch for swelling in my limbs. Not a peep. I made a big deal of the fact that I was flying to my son's wedding at my MO's office, even with him, even though he is a jerk, and NO ONE said anything. A month after the wedding, the arm swelling started. One year in (after PT, etc.), the swelling is erupting out of the top of my compression sleeve. I, again, was totally on my own to know about and recognize it. I never ranted about it before. That felt good. You guys at the beginning, watch for it, especially if you fly.
Meow, that old saying, if you want something done right, do it yourself? It's nine times out of ten exactly true.
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Luminal A can be a problem too, I posted an article about it a few months ago. I'll try to find it.
Here it is: https://www.sciencedaily.com/releases/2018/01/1801...
Here's another note on it:
Dr Torsten Nielsen - University of British Columbia, Vancouver, Canada
Prof Nielsen talks to ecancertv at SABCS 2015 about data showing that premenopausal women with invasive breast cancers of the luminal A subtype had comparable 10-year disease-free survival rates regardless of whether or not they received adjuvant chemotherapy.
In a prospectively performed retrospective analysis of the Danish Breast Cancer Cooperative Group (DBCG) 77B study, the aim was determine the predictive value of intrinsic breast cancer subtypes for response to adjuvant chemotherapy.
Using tumour specimens from this randomised clinical trial, Prof Nielsen explains how data on the immunohistochemistry of the samples was used to identify the subtype of breast cancer and then assess the effect of adjuvant cyclophosphamide-based chemotherapy.
Patients with luminal A breast tumours did not benefit from chemotherapy whereas patients with non-luminal A subtypes did. Prospective trial data are needed to confirm the findings.
ecancer's filming at SABCS 2015 has been kindly supported by Novartis through the ECMS Foundation. ecancer is editorially independent and there is no influence over content.0 -
I was told never to let anyone take my blood pressure or draw blood from my left arm. That was after they did the SNB. Never explained anymore, it was like a secret. I learned almost everything I know from the people on this website. Of course I do look at cancer research sites for studies and articles. My GP and dermatologist say my knowledge exceeds both of theirs on breast cancer matters.
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My Onc Breast surgeon said " I don't want so much as a blood pressure cuff on that arm...EVER" Thankfully he did, but he was the only one. My MO & RO didn't say a word about LE, along with a few other things I should have been told. I wasn't give any exercises post op, found them myself after the rads tech said "aren't you exercising that shoulder? If you aren't you may have trouble with it later". I said "what exercises?". She stared at me in disbelief. A mammogram tech once exclaimed to me "my god, why don't they tell you people anything????".
Exactly Meow, it's like a big secret.
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Sometimes you have no choice though because IV has to go in an arm and they can't do BP on same arm as a result. Then you just hope for the best.
Rant about insurance companies who deny claims. Got a notice today on one denied. Just hope doc's office appeals and resubmits claim or I'm going to be in for an ugly bill.
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I remember after my surgery that my blood pressure was done on my leg since my good arm had the IV line
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during my last surgery stay and when I was in the ER & later admitted for bilateral PEs and a DVT they took blood pressure in same arm as IV. The nurses said they just couldn’t use the electronic cuff-they had to take it manually so the cuff didn’t get over pumped. Good to know moving forward.
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The staff at the lab I go for blood tests at probably dread my visits. My good arm doesn’t have a decent vein to draw from and they always have to find a nurse to do the draw as it has to be taken from my hand. The nurse then always gives me a big warning about how much it will hurt. I usually laugh and say ‘are you kidding! The chemo needles felt liketree trunks, go for it!” At my post treatment MRI the poor dude struggled for 15 minutes to get the contrast contraption/needle set up.....it had to go in the crook if my arm. I think he was in more pain than I was, broke into a sweat...I left with a bruise that looked like I spent the morning with Dracula lol! Funny, I used to be terrified of needles and shots, now it’s a cake walk! One very tiny positive of cancer I guess.
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i had bp taken on my leg too. You ask and they do it.
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You know, I love my MO, but in all honesty, I was never warned about lymphedema, BPs, sticks, none of it. I found out on BCO way back in the days of my original dx. Was never prescribed exercises post op either. This is ridiculous. What if there weren’t such knowledgeable people on this site to help us through this? Terrifying to think that soooo many aren’t warned or educated.
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I brought up lymphedema to my BS. He said he was only going to take the sentinel node so there wouldn’t be a problem. Well, I developed a very large hematoma due to a failed stereotactic biopsy that ended up having to be done by MRI guidance so the dye never made it to the lymph nodes. So path report is Axillary node. I came to BCO and was warnedby several women that they developed lymphedema with just the one node removed. I avoid BP and any sticks to that side.
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When I was getting chemo the nurse had to take my BP on my leg, since I had lymph nodes removed on my right side and had a PICC line in my left arm. Other than this site, she was the best source of information I had.
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My surgeon claims she was super-careful taking my three lymph nodes, and there's nothing to worry about in re: LE.
My RO says the possibility of LE is completely reliant on whatever the BS did, *she's* not going to radiate them. (My lump was in my axilla [armpit], and the lymph nodes were taken out in the same incision. So it's not like they're far apart!)
Neither one of them has given me one actual piece of information on LE awareness, I brought the topic up both times.
And they wonder why I don't fully trust them about other potential side effects.
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