Starting/declining hormone therapy Nov, Dec, Jan 2018
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I have followed high protein low carb no gluten etc for years. I have been dxd with radiation fibrosis throughout my breast, clavicle, and ribcage. Rib dysfunction & costochindritis also from RADs. Plus Breast LE from RADs.
Totally familiar with the gravel as its been my new normal that i aspired to in The beginning of therapy. At least the gravel moves a bit now. Before it was like cemented in. The only thing that's helped for me is my daily LE/FIBROSIS PT and all of my compression care.
The lump is new and ON the surface of my nipple, on there under side. I could cut it off with a razor blade if i was so inclined. I can see it with my own eyes as its growing.
That plus my other SEs I've had for the past 8 months were enough that my MO mentioned Pagets when she called me into her office after I sent picts.
Anxiety is short-term....at least monday I will start to get answers with my surgeon. Have another 3D mammo & then US right after appt and then a biopsy will be scheduled....tbd which kind after scans.Hopefully just a skin punch to rule out Pagets cuz everything will be fine fine fine....right? Right.
Really don't want another primary cancer and or a MX.
At least I know I have my yearly Breast MRI in October soon. More answers then if it turnsinto a wait and watch type thing.0 -
spoonie - sorry you have to wait and worry it sucks. Fingers crossed that it will be very fine (I could wish that it was a wart for you, yucky but not scary). Big Hugs I hope the worry jar is of some help. BTW just did day 12 of 30 and am starting to burn ouch. Saw the RO and she just said oh well it will get way worse than this. Got to "feel the love" from some of these medical professionals. Big Hugs
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Not sure what you're using, GiddyupGirl, but I sprang for MiaDerm and think it helped me a LOT. I'm nearly 3 weeks out from rads and my nipple, while still peeling, feels much better. And the rest of my skin did pretty well.
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I'll just add that Miaderm is mostly calendula cream, which is much cheaper. I also used Aquaphor and Desitin and various and sundry other things through rads. I'm not sure *what* you use is all that important--more that you put some kind of heavy cream on several times a day.
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I did not know that about Miaderm! Thanks--if I ever ever need rads again, that will be useful for sure!
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May you never need rads again.
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My radiation was in 2017. I used organic cold pressed extra virgin coconut oil every morning and pure aloe as soon as I was off the table! I got dark streak and a little itchy. I have dark hair and kind of olive complexion l feel like that prevented me from burning
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I agree, Ingerp. Calendula and Miaderm were what I used round the clock. If I ever need RADs again, I think pure calendula or aloe vesta will be my choices. LOL, I can't even IMAGINE what my boob would've looked like if I HADN'T used the creams as they said and followed all the directions. I bet my skin would have melted right off!!!! Yikes!
Dani -- I sure hope you have an amazing, relaxing and peaceful vacation. Lord knows we all deserve some beach time IMO!!!! I'm gonna picture you out there under that umbrella laughing and having the time of your life with a tasty cocktail in one hand and some bon bons in the other!!!
Let us know how you are when you get back. My fingers, toes, and all will be crossed for you when you head back in for your next screening on your lump in a few weeks.GiddyUpGirl -- Ugggh, I'm so fed up with hearing about drs that react that way when we talk about our symptoms. "Like dude, I'm living with it, not you, can you have some sort of compassion? Would it kill ya?" <eye roll> Glad to hear you are nearing the halfway mark. Sorry the skin SEs are arriving. Try to stay hydrated and constantly creamed up with something, calendula, aquaphor, what have you. Especially right after treatments, if you aren't already. I found wearing my front close sports/compression bras helped during RADs with the pain and ice packs were my friends too. Hang in there.
EDJ3 - So relieved to read that your nipple is less likely to wage war on you these days! Hooray for fast healing and a happier boob in general. May the trend continue!
How did your appt go with the new counselor? Been thinking about that. Fingers crossed.0 -
Thanks spoonie and edj3 for the advice. I sprung for Miaderm on amazon but since I am in Canada it won't arrive until Monday. In the meantime I am using Aveeno with colloidial oatmeal. Things were okay and I got lazy but never again (bonfire boob). I picked up a gel ice pack the hard ones friggin hurt. And Spoonie I just washed my sports bras from after surgery and am going to give it a try. One more thing about insensitive drs. the RO is a gorgeous woman who walked into the room with a blouse split to her belly button and showing flashes of her perfect boobs. I kinda wanted to smack her(not because she was beautiful,that was cool but flashing perfect boobs was a little insensitive.
Anyway thanks for the great advice and for always being around to listen. Spoonie enjoy your vacation hope you have an endless amount of fun.
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If you can, I'd highly suggest running down to the pharmacy or local shop and picking up some Calendula or Desitin or Auqaphor while you wait for the Miaderm to arrive. That's quite a few days away. I think those would be more helpful than a regular lotion, but that's just my 2 cents dear. LOL @ bonfire boob! I sure hope you can at least make use of it and roast a few marshmallows for smore's this weekend!
And yeah, I totes agree about your doc and the clothing choice. Would seem insensitive to me as well.
Oh, I wish I was going on vacation, but that's miss Danni! We are all going with her virtually lol!
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I called mine Boob Flambe.
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Giddyup my PS actually said to use something like Cerave and put Aquaphor overtop. The Cerave adds moisture and then the Aquaphor locks it in. Most of mine sessions were in the afternoon so I would do a light coat of Aquaphor in the morning, put a layer on right after rad and then do the Cerave and Aquaphor before bed. When my BS saw me a couple months later she was like your skin did amazing! Everyone is different, good luck and don't be afraid to walk around with no shirt if you can.
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I, on the other hand, still am wearing a bra at night. I don't want anything brushing my lil booblet. So I keep my soft bra on.
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Sorry spoonie I wish you were going on vacation in fact I wish all of us were. Although those of us still in rads would have to find a vampire club to hang out in eek the sun the sun. You guys are awesome - I will run out tomorrow and hope Shoppers has something that works till Monday.. If you all are ever heading up Toronto way let me know - tons of room at my farm and my ponies love company.
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had great luck using Glaxal base available in Canada. Slathered it on and didn’t burn, Costco sells huge Jars.
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Spoonie77, I'm still processing through meeting w/ the psychologist.
Full disclosure, I'm a survivor of childhood sexual abuse. So much of the BC dx has brought back all that garbage, which surprised me because I was a tiny child when everything happened, well before puberty. So this has been a huge (unwelcome) surprise to have all of that come roaring back, esp after all the good work I've done around it.
Today's fun will include a 24 hour urine collection so my new endocrinologist can rule out easy to fix causes for the what he's calling osteoporosis. So I'm working from home today.
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Giddyup--you'll find something just fine in a regular drugstore. I think I posted above that I added Desitin into the mix--lots of lanolin, and pretty thick so it stays on well.
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I had heard that Aquafor was really sticky, worse than Eucerin and I can barely stand how that feels. So I didn't want something even stickier. I was really pleased with the Miaderm, it doesn't really smell and it goes on easily. I'd thought about just using my normal Lubraderm but I'm glad I got something a little stronger? I guess that's the word.
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I will add my praises for calendula cream. I was able to find the Boiron brand cream at Target in the first aid aisle. It was easy to apply (didn’t need a lot of rubbing) and didn’t come off on my clothes. They also make an ointment version that’s the consistency of sticky Vaseline (better for small areas, IMO). My RO’s nurse gave me sample size tubes of the calendula cream that I kept in my purse to apply after rads, and I bought a big tube to use at night and on weekends. Whatever cream you use, keep applying it for at least 2 weeks after treatments end. My skin held up really well with this routine.0
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Thank you to everyone for the advice - sent my DD to the drugstore for aquafor and calendula (hoping they carry it). I haven't been this preoccupied with my breasts since I was flat as a board at 14. After my surgery I reacted to the tape and when started rads still had rough skin and tons of bruising from the infections from the reaction to the tape.
Edj3 - I totally understand where you are coming from (I was five when it started) I had a great psych and have dealt with it over the years but this does trigger the PTSD. I hope your psych can help you regain your balance. Big Hugs cause sometimes we all just need one.
Spoonie thanks for the pics showed them to my DD for her shopping trip. Waiting with you to hear your results (crossing lots of things so that you get good news)
Ingerp and GreenHarbour and Bennybear -Hi and thanks for info.
Everyone - Be well.
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Good luck GiddyUpGirl. Glad your DD can run out for you. May the bonfire boob be tamed shortly!
EDJ3 - LOL about th 24 hour urine fun. Been there done that before. But hopefully the annoyance will provide some answers. Keep us posted.
So you guys, errr gals, I am really really really doing my best to not panic. That being said, I am worried.
I saw my LE PT today. She commented that my left clavicle lymph node area seemed swollen. (My LE has never affected this area, it mostly hangs out in my breast, ribs, sternum). I was surprised to hear her comment as I had thought I was imagining it over the past few weeks. Guess not. In fact when I was in the car today, driving to the appt, even though I hadn't adjusted the seatbelt or my seat for months, the seatbelt was cutting into my neck in this same area. It NEVER does that. So anyway, she was doing a bit of feeling around there and found an enlarged lymph node right above my collar bone. Ugggggggh. She then asked me if I'd had any other symptoms lately, other than my nipple of course. I told her I had a fever (not normal for me) of 101 that lasted 2 days last week but no other signs of an illness. Just the fever and being so exhausted I stayed in bed. She told me to be sure to mention that and the swollen node to my surgeon on Monday.
Sooooooo my nipple continues to hurts, nothing helps it (aspirin, ibuprofen, rx pain meds, compression, no compression, ice, heat, etc). It's been this way since shortly after 7/2 when I got that Zoladex injection. The pain just waxes and wanes in severity but never goes away. Apparently the pain continues from somewhere in the depths of my nipple, like there's a Black Hole between it and my boob itself because my boob is fine and dandy. No pain there. The mass is still there like a little half-pea sized monster staring at me from the Dark Side of my nipple. Uggggggghhhhhh.
I can make it till Monday, I can make it till Monday. I will be fine. I will be fine. I WILL BE FINE....right????
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Spoonie77 I am worried about you. Severe pain doesn't seem like something to wait until Monday for. Any chance you can call surgeon's office tomorrow and say this is urgent, and be seen tomorrow, not Monday? Obviously, you probably CAN wait until Monday but my math says: GRRR pain all weekend + the anxiety = too much. If you really have to wait until Monday, find some distracting shows to watch or people to hang with or whatever seems reasonable to manage those days. Warm support from me to you.
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Oh Spoonie - I agree with HikingLady - call your surgeon in the am and try to get them to see you. I hate to think of you in pain and worrying all weekend. With all your lymphedma issues maybe it is some kind of subclinical infection (the fever was unusual for you) but you are going to be Fine. You are going to have to wear something with tons of pockets because of all the girls here who are going to be with you. I put on 10 pounds since this started so could I please have an XL pocket. Thinking of you (I have one turkey wishbone left - I will use it to wish you only good things.) GIANT MAJOR RIDICULOUSLY BIG HUGS
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Spoonie, although we know you can hang on until Monday's appointment you shouldn't have to! HikingLady is right!! Pain, fever, the concern of your PT and all the anxiety you are experiencing is just too much to deal with. I would hope that someone in the surgeon's office would hear your concerns, have some compassion and get you in to see someone...anyone...on Friday. I'm thinking that it might be hard to get a Friday appointment, in the middle of summer, but I sure hope they can do something. Be sure to keep us posted.
Sending lots of hugs.
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Hi all - thanks for the hugs, concern, and as GiddyupGirl says "hanging out in my pockets" with me.
It sure does help at least mentally to have you all "with" me. I did call earlier today to my SOs office and they could get me in, but only to see my surgeons PA. My fantastic surgeon is always booked up for surgery on Thursdays and Fridays. I trust my surgeon 100% and if I've waited this long, I can wait till Monday. I'm used to pain, it's been my lifelong "frenemy". It's not unbearable, it's all (like YOU ALL understand) concerning and worrying when you look at the pieces together. I have some great things on my Netflix list and as luck (or the universe working its magic) would have it I was at the library this week printing some things out and decided for the first time in months to pick up a few books to read. Soooo I have some things to keep me distracted. I can do it. Just need to keep reminding myself that the odds are in my favor that this is all benign and will be fine. The chances that it's a cancer of one kind or another are low. And even if I went in tomorrow, I wouldn't know anything until Monday anyway, so I guess I will get my answers when I get them. LOL. More waiting....so come on ya'll, there's pockets for everyone. 0 -
Late to the Spoonie support but you know you have that from me--I'm glad you have some distractions at hand to help a bit. And I'm on these boards on the weekends too so send up a flare if you need someone to vent/chat/whatever with.
Pee collection is done. I drink a TON of water and yesterday was a very hot sweaty run day which meant I drank even more than usual. I ended up having my husband make an emergency run to the doctor's office for a second jug . . . which is also very nearly full! (Husband is much close to the doctor's office and I was in back to back meetings all yesterday afternoon anyway so he kindly made the run for me). Man that's a LOT of pee!
Late this morning I see my MO for the tamoxifen discussion, then head across town to a different St. Luke's location to drop off the pee and get blood drawn for the rest of the labs, then BACK to the first location for a 2PM appointment with my OT about my arm pain.
Work is a write off today.
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Thanks for the offer EdJ3 - I'll keep my flares handy just in case!
Good luck today. You're in my thoughts. I know you've been dreading this MO appt & the Tamoxifen debate. I hope they will listen to your concerns and you can both have a frank and respectful conversation that builds trust netween you.
I'm anxious to hear how things go...as GGIRL says ,"i'm in your pocket." today. Hugs.
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Spoonie- I'm a late arrival as well! Hope you have one more pocket available or is anyone willing to share..
Has anyone mentioned cellulitis? Everything you described is how my cellulitis felt. The spot was on my arm and it was more the size of a grape. It started as just a "ball" then got sore (just damn annoying not keep you awake at night sore). I has several what I call phantom fevers (no known source??? Like WTH why do I have a fever!?!) Went for a OT appointment she sent me to urgent care....urgent care said this could be a swollen lymph node but dont panic its probably not cancer...THE HELL YOU SAY!!! Had to wait 2 days for an ultrasound. Was relieved and surprised that it was cellulitis. The lump did not fit how everyone had described cellulitis. Since I have stage 2 LE I freak about every lump on that side now. I'm glad you like your surgeon! I just see my RO and MO. The last time I saw my surgeon was for my weeks post op in 2017. I'll be around all weekend to. Sunday is supposed to be rainy here..hoping for decent weather today and tomorrow. Big hug!!!! Pounding the ground with good vibes!
Edj3- sending good vibes for you to!!! Hipenall goes well with you appointment. The Tamoxifen talk was overload for me! I had just been diagnosed with LE and was in a fog my brain couldn't handle anything else. Wish I had found these threads earlier!
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Hi Spoonie: sorry you couldn't get in today but Monday will do and you'll be fine fine Fine. If you can get an old series called Covert Affairs (in Canada I get it on Amazon Prime) it is excellent, it was binge distraction before surgery. I too will be around on the weekend if you need company. Its burning hot here today and tomorrow so no riding (indoor day). By the way my Miaderm came today instead of Monday so bonfire boobie hopefully will be reduced to tiny flame boobie. Hugs sweetie
Edj3 - good luck with your Tam discussion. Make sure you get heard and your concerns validated. I have found several studies that show that a lower dose of tam is effective without as many side effects. Have you seen them. It might be a point to bring up with your MO. Also if you're concerned about blood clots you might ask her if tumeric and fish oil caps are ok natural blood thinners. Anyway will be thinking of you and hope everything goes amazingly well.
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Oh Spoonie, this all really sucks. I don't know that I can say anything to make you feel better. You are doing all the things. You are doing everything you can do already. So try not to worry because no matter how much you worry, nothing more can be done. I know its harder than it sounds. I'm keeping my fingers crossed for you.
On Netflix, I recommend Dead to Me. I binged the whole season in one day. I hardly ever watch TV but that show was great. Both main characters are women and the show is full of surprises. I can't wait for the second season.
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