How long did your nipple issues/healing take after RADs?

Spoonie77

Just wondering, for those of you that had RADs and subsequently experienced healing issues with your nipple, how long did they take to go away?

I'm going on 8 months and mine are still continuing; flaking, peeling, yellowish crust now and then, tingling/buzzing feeling, sticky/dry/oily depending on the day, no matter that I moisturize etc.

Up until recent events, I never gave it a second thought. I had been told prior by my team that this was normal due to RADs and it would go away in its own time. Now looking back, I'm wondering if this should have all resolved by now. I kind of think it should. 8 months is a LONG time IMO.

Recent event was a new lump appearing on the underside of my nipple. In my non-dr opinion it looks like an early stage Nipple Adenoma. And when I was of course googling, I see that Paget's looks just like what my nipple has looked like over the past 8 months. I'm sure this will turn out to be nothing, given Occams Razor and all that jazz.

I will be talking to my MO tomorrow morning, and sending them my picts, but I guess I'm just wondering what others experiences have been with nipple healing after RADs.

Is my experience completely abnormal?

santabarbarian

Spoonie, my boob looked absolutely horrid at the end of rads, but it was totally healed within about 3 weeks of stopping. I still have a "tanned" breast and my nipple is darker too, but no pain, itch etc. Could you have a skin infection? I am sorry it is persisting and hopefully the MO will have ideas.

Spoonie77

Thanks Santabarbarian. I'm glad to hear you healed up so fast even though you had a rough go of it. I bet you were super relieved!

I doubt it's an infection. It's not hot, swollen, or full of fluid. It's a mass. It could maybe ecezma (the flaking/skin issue) but on one breast and only the nipple only it seems rare according to the interwebs. I did see a RADs dermatologist for the first 3 months due to RADs rashes I developed after everything finished. They were not looking at my nipples then, they were focused on the rashes. I hope this all turns out to be nothing.

Are we allowed to post pictures of our symptoms or is that a no? I don't want to break any rules. Nevermind...waiting is just so hard. I'll have some idea tomorrow from my MO. I waited 5 days I can make it one more night. LOL. Please let this all be nothing.

santabarbarian

Amen Spoonie!

Spoonie77

Thanks again Santabarbarian!

Good grief. I couldn't sleep at all last night. My nipple is actually really becoming painful the past day or so. The initial burst of pain 2 days after the Zoladex was what caused me to find the nodule/lump in the first place because I wanted to figure out what the heck was hurting.

Last night my nipple/the nodule/lump area hurt again, and looked brighter red & was more swollen than the other, pulling to the right a bit but seemed like it's flattish for some reason, rather my normal "perky" on top of the other issues.

All very different than my R nipple, even disregarding the color/texture change since RADs.

At least this morning the swelling is down (thankfully I took picts) and the pain is less.

Ugh wanting to know the answer is just killing me. I'm sure the rest of this day will drag by but hopefully at the end of it I'll either be going up to be seen by my MO or know that it's nothing to worry about. I can do this...I can do this.

Nervous laughter.....le sigh.

Spoonie77

Okay everyone wish me luck. Oncology called. They want to see me stat. I have an appointment with my oncologist in an hour. I'm guessing from the phone call that I'll be up there most of the afternoon getting a mammogram and an ultrasound.

mom2bunky

Thinking of you and praying for the best news Spoonie....

GiddyupGirl

Fingers and toes and everything else crossed for you Spoonie. Wishing you all the best news. Here's hoping its just an annoying problem. Take care and keep everyone up to date. Thinking of you.

Spoonie77

Thanks ladies.

I wish I had answers but unfortunately just more of a waiting game to get through.

I have to see my Surgical Oncologist in the next week or so. They will handle things from this point.

My MO was very glad that I brought the issues up to them and that yes, there is a mass there that shouldn't be there. She agreed that it is concerning and that in general, yes my nipple should have healed and been beyond where it is in the healing process at this point 8 months later. She would not comment really one way or the other about what this mass on my nipple may be, she did list a few possibilities (Nipple Adenoma, Early Stage Paget's, Leiomyoma) she did say that it would be difficult for imagining to detect anything at this point . They are apparently low accuracy for nipple related issues. I guess I trust that.

She said that my SO would be better able to tell me the options for diagnosing and for treatment for what is going on. From the way it was explained it seems that the only way to tell for sure is to look microscopically at the tissue, and for that we need surgery/biopsy. Depending on what my surgeon thinks this is, treatment seems to be the same....removal of the nipple. Depending on if it's malignant then I'd have to go through the whole "game" again and I don't know what that would mean for RADs or anything. Uggggh. And is that a recurrence or would that be seperate from my first dx? No clue.

First things first....what the heck is it offically?

So I wait. Again.

On my way home from my MOs office, I really began to wonder if I made the best choice by going with my LX instead of MX. I hate all this worry. I know I did the best with what I could at the time, but now I know how every single thing panics me. IDK. I just know right now I'm feeling down and want answers. At least my MO let me know that a week or two of waiting to get in to see my SO shouldn't be overly concerning. I guess I will take comfort in what I can.

Thanks for listening everyone. I can actually tell you all the truth without worry, you get it. I'm so grateful.

GiddyupGirl

Spoonie I am so sorry you didn't get answers - the waiting sucks especially since you've already done the waiting game. Try not to regret choosing a lumpectomy - you made the choice at the time that worked for you, that's all any of us can do. I will keep you in my thoughts wishing for a good outcome for you. From what I have read you have a whole lot of friends here that will be in your pocket wishing you well. Stress relief would be good for you - if you don't swear now might be the time to start.

Rikki

santabarbarian

Spoonie I did a LX too..... and one thought I had about choosing LX was having something to remove if there were a recurrence. If you did a MX and got a lump on your sternum, you might look back and wonder if a LX would have made a lump happen in the tissue where it is easier to treat. So try not to use 20/20 hindsight..... Hopefully, again, it will be something minor. Crossing fingers for you.

Spoonie77

GiddyupGirl - LOL I do swear, "occasionally", and you can bet there were many being uttered on the car ride home! Felt good to vent. Plus, when no one is looking, traffic wise, a few hearty yelling sessions help get the frustrations out. Sometimes I feel like I am channeling Samuel Jackson with all the MFs that come out my mouth in moments like these. Thanks for the laughter and support. They are both much needed and appreciated whole-heartedly!

Santabarbarian - You make an excellent point. Thanks for reminding me to flip the coin in reverse as well. So much of all of this is a crap shot and we'll never know whether things would've happened differently in any case. Life is such a ride, ain't it?

I feel a bit better, more centered, after a LONG nap, a cupcake, and good long talk with my best friend and also with my sister, who's also my best friend. I'm lucky to have some great people in real life that are in my corner, I know not everyone has that and I am forever grateful for that. Tomorrow is another day and and between them and you all, I'll make it through this next chapter, whatever it may bring. I will keep everyone posted as I find out more a long the way.

DeeDeeT

Spoonie-- I just had an MRI that confirmed I'm still so swollen on my right (radiated) side, they could not fully see the two , very tiny lesions they were monitoring. Which means I'm still reacting to my radiation treatment too. In fact, I wake up at night hurting. I also get the yellow crust and am very sensitive. All of these symptoms were sending my mind to very dark places.

At my MRI follow-up, my doctor was very reassuring and said that in extreme cases, some people can take up to two years to fully recover from radiation. I don't mean to pry, but didn't you mention you had an autoimmune issues? If so, I wanted to mention I was being tested for autoimmune. In my case, it wasn't confirmed, but very suspicious that I may have one. I then was diagnosed with breast cancer and sort of put that on the back burner. I wonder now if autoimmune issues may prolong our reactions to radiation?

I wish you the very best!