Starting/declining hormone therapy Nov, Dec, Jan 2018
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Thanks Hapa for the Dead To Me recommendation - couldn't sleep last night so binged half the season. It's amazing.
In other news, my left side of my neck is very visibly swollen. Sent picts to my mom and she of course panicked. It constantly aches. Am wondering if you may be right VargaDoll, maybe this is that kind of odd type of Cellulitis devolping in my nodes? IDK. Will find out on Monday. Your description made me laugh -- "THE HELL YOU SAY!!". I totes understand! Glad they figured it out asap for you. Thanks for sharing it makes me a little less worried about nodes being cancerous....a little. You know what I mean
In the meantime, I'm bedbound with annother of my lovely Migraines. They are beastly, even with my rxs to tame them. Fun times At Spoonie High.
Thankfully I know you are all in my pockets. You ladies are the best. Truly. I'm just anxious for Monday to be here and am no longer panicked. I know something is wrong and I trust my doctors to figure it out.
EDJ3 - How did things go? Hope better than expected. Thinking of you.
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Was thinking of you just now Spoonie and here you are!
Sorry about the swelling, that absolutely blows.
Yesterday was jam packed. Dropped off the two (FULL) jugs from the 24 hour urine collection and got blood drawn for all the endocrine checks. Tests are already back and as suspected, my labs are boring and normal. So I will talk w/ the endocrinologist sometime next week for the osteo drugs.
MO was great, actually. He listened/heard--I told him hey I'm willing to try the tamoxifen but I've got a race on Sept 8 and I'm in training now. I don't want to start anything before then, this race is very important to my mental/emotional health. And then I'd like the slowest most gentle ramp up in the world. Hormone drugs and I have not gotten along (birth control pills made me gain 30 pounds in about 6 weeks and I bled all the time, yuck) so let's baby step into this and see how I do.
He's completely fine with that but did say hey you should wait a week to start the tamoxifen after your race, and let's go with 5 mg a day. HOOOOOOOOOOOOOOOOOORRAH.
I also asked his take on which of the three osteoporosis drugs made sense in light of the tamoxifen and breast cancer--hands down, he said, prolia. He actually winced when I mentioned Forteo or Tymlos and said that Fosamax can be hella hard on the gut. So I'll share that with the endocrinologist and he'll need to make a case w/ insurance but I think I have a plan.
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Spoonie - sorry about the swollen neck that must be super uncomfortable and hope that your appointment on Monday sorts everything out in a very positive way. Migraines suck - hope it eases off (all your stress can't be good for your poor head). Feel better.
Edj3 - yay for such a good appointment. Your MO sounds awesome.
For me last night my boob was wickedly painful (not the skin it just stings) but inside. I just finished the first three weeks and am freaking out a little if it hurts like this now how do I make it through the next three weeks. Any suggestions. (I am allergic to aspirin so can't take ibuprofen or motrin).
Have a great weekend ladies and Spoonie feel better.
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GiddyupGirl I found (and am still finding) that a good, soft supportive bra that holds the Boob Flambe in place was the best way to get relief. I know not everyone has that experience (and many have shared that the idea of anything touching the radiated breast was horrifying) but for me, holding things STILL in a gentle way was and continues to be most effective.
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GiddyupGirl, it was the same for me as what EDJ3 suggested. Most everyone was aghast at me saying "support" helps, but seriously that was the thing that helped the most with the "inside" pain, which I totally get what you are saying! Hoping some light support will reduce it a bit for you. Mine never went away and there was a great deal of aching/pain inside I just had to endure as my outside just melted away, but the support brought it down to lower levels of hair of fire. LOL. I have basically lived in my sports bras and front close compression bras ever since surgery. I miss my normal pretty bras, but wearing them still leads to pain and LE sneaking back in. So I'm adjusting.I think you probably have already added the support factor in, think I remember you saying something about dusting off the old surgery bras. I can't imagine not having OTC stuff on board to help. Eeek. I feel for you! Hmmm, have you asked your team about pain rx suggestions? Since you cannot take anyting OTC that contains aspirin. I would think they would be open to giving you something, maybe even Tramadol to help? Can't hurt to ask. Keep us posted, may you find some relief.
EDJ3 - YAYYYYYYY! Your MO sounds wonderful! I'm so relieved for you that he was open to hearing your concerns and making that into your plan going forward. Good luck on your training and your race in September. Now that you know someone is on board with "the slowest ramp up in the world" hopefully that takes a TON of stress spots off your mental plate and you can focus more on the things you love! <happy dance for you>
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By the way, fun note, today is my 1st Cancerversary. A year ago 5 days earlier I was called in for follow up imaging to my first mammogram ever. 2 days after that I was getting an US core biopsy while my sister held my hand. 1 day later with my parents and I watching a movie, as they had traveled 5 hours to be with me when the call came in, my closest (we'd be friends if not for the dr/patient rule) PCP ever, indeed called me at home at 2:30 pm to tell me the sad news.
One year ago today, life changed --- in bad ways, obviously, but in good ways too. If not for cancer, I'd still have to shave my Left armpit, if not for cancer, I'd never have me my FireFly sister and made a new best friend, if not for cancer, I'd not have met any of you wonderful souls and made so many friends along the way. Yep, cancer sucks but there are some silver-linings and I'm glad I can count you all as one of them. Sending you all love and healing this weekend and always.
I do find it ironic that today is my one year and in less than 2 days from now the game may start all over again. Just when things seem to settle down, that's when LIFE often says "Hold my beer.". LOL. Been there and done that a billion times since I was 13 and I will do it again this time too. <drinks LIFES' beer> "Bring it."
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Spoonie- extra hug for you today! I didn't realize you were so young at dx. I thought I was young at 52! Or at least I felt young!
Edj3- glad your appointment went well!
I will vote for support to! I wore a sports type bra all through radiation 24/7. I found a style that worked for me at Walmart and bought 4. I knew that after radiation they would be stained due to all the coconut oil and aloe. Spoonie- I had a Victoria Secret collection that would blow your mind!! I had been building it for years! Perry bra and matching panties. They are all downstairs in a bag in my closet. I'll never be able to wear them again due to the LE. Could we have a moment of silence for all the pretty bras that are being neglected due to BC and LE????
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*lights a candle for the pretty bras that are now gathering dust*
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I too mourn the pretty bras that were once so popular - candle being lit in gratitude for their years of service.
Thanks girls - I was wearing a lightweight sports bra in fact since spoonie suggested it earlier i never go without. I have switched and put a sturdier sports bra on (sorry but the other one was really cute) and the pain has subsided to random stabbing as opposed to constant beating with baseball bat. WTH I was doing ok and it came out of nowhere. have appointment with my RO on Tuesday hope she has some suggestions. Btw keeping my lotion in the fridge - feels much better on a hot boob.
Spoonie I am sorry you are where you are but hoping that everything will go well and easily on Monday and life will hand you back your beer.
Hugs and thanks
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The pain/discomfort in my left arm, breast, shoulder, heck that whole piece of my body subsides when I wear a bra that slightly compresses. My OT did LE massage on me yesterday, said my back on the left is swollen (yup) and she also noticed the swelling below my armpit. I suspect one of my running bras isn't quite as good at holding things still when I run and my pec is seriously pissed off. I mean it HURTS. Then everything else gets involved.
I say all that so you know it may be from your pectorals. It's getting radiated too, and probably contracting up nice and tight (and painful).
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Thanks edj - I was unloading feed from the truck yesterday afternoon (for my ponies) bags are about 40ibs (did about 25 of them). Hadn't thought about my pecs as I am used to lifting (at least before all this started). Don't have an OT or PT (its not covered in Canada and I am not sure about massage therapists for breast cancer patients will check with my RO on Tuesday)
BTW - totally impressed with the running - every time i have tried to run my husband stands and laughs - says I run funny just like a girl. Best of luck for your September race (maybe radiation will give you super powers).Lol
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This is an excellent bra with compression and it feels so good on. There are on sale until midnight tonight and quite a bargain! I ordered 2. The website is wearease. I'll try to post the link
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Ladies please be careful lifting to much to soon! I have stage 2 LE and it sucks! I feel my LE is due to the incision and route that was used to do the SNB but I do wish I had more info before surgery
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Would you mind sharing where both of your incisions were? My SN incision is way in my armpit, I mean up in there. And my lx is on the outside edge of my nipple just over half the circumference of my nipple. And as my breast surgeon said, he tunneled up in my breast to get everything out.
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I only had ONE incision and the surgeon pulled my lymph nodes through it!! If my boob were a clock my incision was at 11:00.
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Ow ow ow ow just even thinking about that makes me hurt. YEOCH.
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Thanks for the info Vargadoll I will check it out - hopefully they deliver to Canada. Vargadoll your surgery sounds freaking painful and edj3 yours doesn't sound too much better. OUCH. I had two incisions one just at the edge of my armpit and one in the centre of the outside of my breast (its about 2 inches) That hurts way more than my snb incision. Hope you all are having a fun Sunday.
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BTW my RO said I could lift what ever I wanted - maybe she should have done my job for a day.
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Weird, GiddyupGirl. While my RO didn't give me any restrictions, my BS sure did and now my OT is definitely laying down the law. She has me using no more than 5 pound weights and I very nearly hit myself in the head today the weights are so light
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Please tell me someone took a picture. Glad you weren't hurt but those moments are kinda funny. Try explaining to people that breast surgery gave you a concussion. My BS gave me lots of restrictions (I had surgery end of April but had an allergic reaction and infection which made me late to rads) but he lifted them saying if it hurts don't do it. Problem is you don't know it hurts until you do it.
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Exactly--and it's looking like my pain/discomfort are from swelling plus the left pectoral is flat out painful. One of my running bras doesn't compress as well as the other one (different type, and I would have said they were the same--surprise), and so even my little booblet with a divot in it yanks and pulls on that fried pec. But I'm not very good at paying attention to signals like that which is how I came to run two races w/ a fractured pelvis.
Never said I was bright.
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I just got home from church...when I met with the BS he said...I think I can do everything (get the BC and 2 lymph nodes) from one incision. I said ok thinking how great it would be to only have one incision to care for while healing....WRONG!! I had LE straight out of surgery if you ask me. My boob was HUGE!!! I'm talking twice the size of the "good boob". I was so swollen! I ASSUMED that was normal. After all I did just have surgery. I came home with 1 drain and only had it for 3 days. When I called to ask when I could get the drain out I was told when I had less than (insert number here can't remember) of fluid draining. I had never had that amount. My DH cared for my drain and I wouldn't even have 1/4 of the bulb filled twice and day. Get the drain out...boob is still huge...2 weeks follow boob is still huge. Plus now I have what fills like a golf ball in my arm pit. About 3 weeks out the cording started (and has not stopped 2 and half years later😤) I called the surgeon got no response....called again....nothing. I YouTube how to pop cords and pop my own damn cords. I had appointments with my RO the next week and am hoping she can help me. She takes one look at the super boob and orders PT. Theres a 3 weeks wait because there were only some many LE therapist. I'm now on like week 8 of the mega boob and I have to wear a bra 24/7. It wasnt OMG pain it just hurt not to have it supported. My preop appointment the week before is when LE was mentioned to me. I was told that with SNB the chances of LE were not likely. I should have done my own research and I should have known better. (I have a degree in OT but early intervention and pediatric is my area) I had so much to do before surgery. My mom was in the hospital my DD was 7 months pregnant and having complications I have child who is multi-handicap who depends on me 24/7..I was a little overwhelmed just dealing with the BC! Oh...I also didn't tell anyone. My parents still dont know I had cancer or the company I contract with. The only people who know are my in-laws, my DD and SIL, a few of my close friends and the minister of my church and a few prayers warriors. Whew.....that was to long!
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Naughty booblet. You ran with a fractured pelvis (did you hit yourself in the head first with a hand weight) Ok - was racing (on horseback) with my friends late one evening fell off and ouch my hip. Went back to my friends for a barbecue and hot tub. Drove home (40 min). Found out the next day I had a hairline fracture in my hip. I cannot comment on anyone else's good sense.
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Vargadoll O-M-G. That sounds beyond terrible
And thanks for the good work you do as an OT, love me OTs (and PTs too).GiddyupGirl well no. I didn't have any excuse except I thought I might have a groin strain. But after the second race, I truly couldn't walk so got seen the next day. When the orthopedist's office called with the MRI results (Hi you have a fractured pelvis) I stupidly/brilliantly said "I do not!"
Quick change of topic, what kinds of horseback racing do you do?
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Well, all my homework is finished (detailed picts/written timeline of symptoms/list of questions) and it's all packed in my bag for tomorrow. Somehow I kept my dog from eating it all...hardy harrrr harrrrr.
I'll be seeing my SO at 8 am and laying it all out for her, basically a "Here ya go. this is what my nipple AND my other nipple looked like nearly every day for the the last month. Plus, lucky you, as an added bonus here are some stellar shots of my lymph nodes throwing a swell party (pun intended as they are VERY swollen/angry) in my neck for the past week.".
I think she may think me a bit nuts but this is the way I cope with my medical issues; I document.
The most important thing, for my sanity, that I need out of this appt is to have a punch biopsy scheduled to rule out Paget's Disease of the Nipple. Their "early stage paget's" pict is pretty much the twin of most of mine. EEEEKkkkk. So since I have about 90% of the skin and other symptoms that correspond with this rare cancer, I'd like it crossed of the possibilities list ASAP.
Wish me luck ya'll. I'll post more when I know more. Thank you everyone for the messages and thoughts/prayers. You really all do touch my heart and I thank you for the continued kindness and support.
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Spoonie77 EEEK for sure, and you are a force to be reckoned with! Good for you, planning your questions, and listing and documenting and self-advocating. Keep us posted. Warm hugs of support to you.
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edj3, I’m glad your MO appointment went well. Sounds like he really listened to you. Vargadoll, no post is too long. That’s what we’re here for! Spoonie, sounds like you’re prepared for today’s appointment. Know that we will all be there with you. Do keep us posted as you feel able to.
Last summer and fall was all about my breast cancer. This summer, I’ve been working really hard to have it NOT be about cancer. I’m someone who’s not always good at naming my emotions, but I do know there’s a lot of gratitude in there. I’ve been luckyto have support from family and friends, but I’m especially grateful for the women on these boards. There’s nothing like support from someone who has been through the same things as you.
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Spoonie-good vibes, fingers crossed and hands folded in prayer! Please update when you can!!
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Spoonie what a super organised woman you are kuddos. Hope things are going in your favour - like everyone my fingers are crossed and sending all the good luck I can. Hugs
Ok edj3 - its not exactly like the racing you are probably thinking about. We were racing polo horses - we trained at polo fields in the afternoon took our ponies back to the farm. Then decided that evening to race them in a field called the "catastrophe field". They were thoroughbreds and quarter horses and crazy people. Wanted to check out their speed without the boundaries of the training field. Not too bright but when we do it what a rush. Hope rads going well.
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it looks like I am late to the Spoonie support bandwagon, but please count me in.
Good luck to you, Spoonie, with your appointment today!
Ladies, you are amazing!
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