STEAM ROOM FOR ANGER

Meow13

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.

MeToo14

"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.

jaycee49

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.

marijen

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.

Meow13

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.

Egads007

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.

bcincolorado

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.

kathindc

I remember after my surgery that my blood pressure was done on my leg since my good arm had the IV line

Lula73

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.

Egads007

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.

Artista964

i had bp taken on my leg too. You ask and they do it.

SheliaMarie

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.

kathindc

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.

pingpong1953

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.

ChelseaSculler

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.

ChelseaSculler

Oh, and Marijen, thank you for that link—I mean, I'm not happy at what it says, but it's information I can ask my MO about.

marijen

Chelsea, please tell us what she says. I doubt mine has any knowledge on Luminal A. I didn't get a Ki67, a Mammoprint, an Oncotype, only a grade two. My BS said he never had a patient get LE, that turned out to be wrong. No CTC either. My ALND was radiated.

DancingElizabeth

Humm....I only know mine was Grade 3, huge and with a high K67. And, ER +...HERS neg...

After reading what the report says about "high heterogeneity" - I feel like I might as well forget about saving for retirement. F*ck.

I don't know why my MO thinks I *only* have a 5% chance of recurrence. She says I have very good tumor markers. But, I've read that those don't always matter - either. (Maybe she's got my chart mixed up with someone else's who was only dx'd with Stage 1).

I don't know - what to think or what to tell myself. :-(

Meow13

Do not trust ANYONE! Do your own research, that is what I have learned. I have one of the most respected oncologists out there but I speak to him for less than 5 minutes at each appointment. You are your own best advocate.

runor

Oh yes you can get lymphedema with just one node removed! It not only shows up in the arm but the breast, armpit, side and on bad days I feel swelling in my neck!

I do pretty well managing it on my own although sometimes, for unknown reasons, it gets way out of control. But no one was on it other than to tell me to buy a sleeve. There is good info on this site at the Lymphedema threads.

smwusaf

yeah, i was told (in passing) by a nurse that I shouldn't draw blood or do BP on my left side anymore. She didn't say why, I looked it up here later..... geez. I will say I was overwhelmed by all the info at first but I'm glad I've done and continue to do my own research. It makes me feel more in charge of my life. (at times)

Lula73

Funny to have a BS tell you they’ve never encountered LE...of course not, we’re well beyond seeing you by the time it happens. They’d probably be shocked on what their real number is. It doesn’t matter how careful they are, it doesn’t matter how many nodes they take, it doesn’t matter if any of the nodes are positive or not, it doesn’t matter the stage/grade/type of cancer, and it doesn’t matter how long it’s been since your surgery. The risk of LE is always there and it can flare up anytime it wants to. It has to do with the lymph fluid not being able to drain properly and it backs up causing swelling and pain.

Lita57

You took the words out of my mouth, Lula.

ANYTHING, doesn't matter how small - even one little node removal, can disrupt the lymphatic system and cause problems either immediately or years down the road.

L

Egads007

Has anyone here had LE years down the road? Like 4 years later or more? I lift weights so after reading Runor, Lula and Lita (sounds like a movie title lol) I’m starting to get a bit worried. All my MO & NP say is ‘be careful’ but have never said to stop. I did tell them that I increase the weight VERY slowly. The only prob I’ve had so far is with a small area of LE on my right ribs(from rads) getting a little sore if I work my upper body too hard. I’ve never had a problem with my arm. Should I be worried

DancingElizabeth

Egads - I don't lift weights, but have been terrible about LE precautions. I do EVERYTHING in my classes at the gym. Push-ups, tricep dips...and on. I don't hold back. I hope I don't regret this!!!!

I think - pay very close attention to what you feel...but I could be wrong. I probably don't know - what *I'm* doing!!!!

Egads007

Dancing, I hear ya there! I'm constantly checking out to see if my fingers or arms are swelling after each set, especially (like you) on dips, push up, pull ups and bench press. I've recently started dead lifting (just with bar so far, 45 lbs), but I'm dying to add weight! I can lift heavier, but for the time being I'll be patient and in a few weeks add 5 lbs to each side. Man, is that ever going to look ridiculous, 5 lb plates are about the size of tea cup saucers LOL!! Meh, I don't really care what people think, it'll be good for a laugh. My goal is to 'power clean' (like you see on tv where the guy lifts and heaves it over his head). Don't know if I'll get there, as you say I probably don't know what I'm doing.

Glad to see you feel better today, I saw on the other thread that your class went well last night. I love your passion for the gym, I feel exactly the same way....such a rush!!

DancingElizabeth

LOL Egads!!! I love that pic!!!! I seriously feel the same way you do!!!! Thanks for the kind words!!!

suems

Apparently the risk of LE increases dramatically if the area is radiated. I had 24 nodes removed, and then the whole area irradiated, and LE popped up shortly after rads finished. (less than 6 months after surgery). 3 years later, it's still an issue. I wear a Medicalert bracelet on my right wrist to stop anyone poking / stabbing / squeezing the arm. At least it makes them ask!

Micmel

I have had 35 nodes removed from my left arm. Every single node in that area. About three week days later, it became heavy and painful,and very tingly. that is when they decided to remind me how they glossed over the percentages of getting it. I immediately saw a therapist and took control over it. I did not have radiation. I wear a light sleeve everyday, and when it's not on. I can tell. I have been told I have a very mild case, which I find interesting because every node was removed. The inflammation and predisposition is there no matter what if you had any nodes removed. It can be extremely painful, I had to wrap it daily for months. Decompression wrapping. I even have a pump that I keep on hand for flare ups. My breast surgeon that just did my recon... is a lymphedema specialist, which is why I chose him. Don't want to let the bear out of the cage. He looked at my arm during surgery and said there was scar tissue that he released. It does feel less full and better. It is unfortunately another chronic condition we have to manage. He also did tell me increasing weight too much during exercise can really over extend the fluid in your arm that has no where to go in a hurry, due to inflammation. So it swells even more. It's times like that you don't want to scratch yourself. Infection would run high. Daily massage and elevation helps as well! It's awful that we have to learn by trial and error. Not by guidance from our medical team. It's really backwards. Good grief. ~M~

Simbobby

Thanks for that info Suems.

I just had 26 lymph nodes removed and will be starting radiation in two weeks or so once tissue expanders are filled.

I am seeing a lymphedema Dr next Fridaywhich will be before radiation. I will ask her if there is any way to prevent it but my BS said it is 30% likely I will get it due to the number of nodes involved