MARCH 2018 starting RADIATION

Veeder14 · May 2018

Hi All,

I am going to try and get in to see the RO tomorrow since I'm heading back to the hospital for a surgical follow up. kaywrite you may have answered my question about the skin on the aerola. I've got blotches of pink skin where it used to be dark colored. Although I haven't noticed it peeling, maybe it did and that's why I have pink colored skin there. Will ask the RO if I can get in.

The rest of the breast skin seems to be turning to tan colored, finally. Still using Miaderm and not wearing bras. My OT suggested Visco-Gel Silicone Scar Sheets to put on my scars at night. It helps to soften the scar area. You just cut to the correct size and it sticks to your skin and I wear it at night only. As long as your skin isn't broken down it's ok to use, and is easy to remove.

Good news my mom is being discharged on Friday and coming home. Will need assistance at home. I've just been helping make arrangements by phone trying to reduce my traveling after spending the month at the hotel for rads. Just when I thought I'd get relief, my dad gets sick. He's 95 and very functional but needs assistance with scheduling doctors app't, etc., So if I'm not on here that often, that's why, I'm busy with family.

Beaverntx · May 2018

Veeder,

May all go well with your appts tomorrow! It sounds like your skin is healing normally as the "old" skin sloughs off and the new skin is likely to be pink.

So glad to hear your Mom will be coming home and that you will be able to help your father with his scheduling.

Here's to a good week for all of us!!

metoo2018 · May 2018

Veeder - so glad to see everything finally coming together for you. What a rough road it has been. I am anxiously awaiting 30/30 about noon today and will be very glad to ring the bell!

Paco · May 2018

metoo: ring that bell with vigor today! You deserve it! Congratulations on finishing up.

Veeder: best of luck on your follow up. I hope the RO gives you the a-okay that all is normal. My areola is all discolored too but I kind of see it gradually coming around to almost normal.

Kaywrite: report back on the regularly scheduled RO follow up if you would. I have mine on 5/31 and I am seriously considering canceling it. My BS wants me to come back in August for my first mammo and a follow up with her and that is soon enough for me. I'd be interested to know what the RO wants to see at the follow up visit. Thanks for always being my trailblazer through this journey!

kaywrite · May 2018

Veeder - it took me a minute to realize pink skin was showing through. I shower at night, after a whole day of having my breast wrapped up in aquaphor, so everything is super soft and tender. When I noticed the pink I gently exfoliated with soap, warm water, and a washcloth in the shower that night, holding the skin still. Didn't see anything come off, but the skin was pinker after.

I can't get over how well the excision scar has weathered all of this - it is barely visible.

Paco - I sure will. . I am anticipating a couple of questions and a peek. They've never done much more. I've always thought most of their work is behind the scenes. It does sometimes seem we spend a disproportionate amount of time scheduling 10 minutes of their time.

metoo2018 · May 2018

DONE!

So glad to be finished. My follow up with the RO is one month - I asked if I was getting any pictures/imaging and he said no it would just be a quick visit. If my skin is clear then I will think about canceling. it is a waste of time and I will see my surgeon a few days before for my surgical followup so I can ask her if there is any reason to follow up. My appointments with him now last 5 minutes and he charges a couple hundred dollars to the insurance company. I feel empowered to choose whether it is necessary or not and even though i am not paying for anything anymore it still seems wasteful.

He said my skin may still change some in coming weeks and I have a bit of an open sore under my breast but my underarm area is already greatly improved with the silvadene cream I started last week.

Tomorrow I will head back to my office for 2 days before heading out on vacation. Life is good!

Appreciate all the support and info here along the way!

Beaverntx · May 2018

Congrats, metoo. Have a wonderful vacation!

kaywrite · May 2018

metoo - way to go! Congratulations! I'll ask the RO tomorrow: why come back so soon if no SEs?

flowergal · May 2018

Yea! Meetoo i heard the bell here in Memphis LOL! Have a relaxing vacation . I also think the RO visits are useless. When ever I asked a question, it was "that's normal "

or" I don't know" Thank heaven for good websites like Sloan Kettering, this one, and this forum! N

Veeder, So glad your mom is improving and hope ur Dad is OK.

I was getting ready to color my hair yesterday and happened to read the warning about " having a tattoo can increase the risk of allergic reaction . SO after i was finished, I told my husband what it said and jokingly said my tattoo didn't cause a reaction. He looked at me quizzically since Iv'e never gotten a tattoo and he said oh- you mean your tit tat .! On that note, I hope you all have a great week.

Veeder14 · May 2018

Congratulations metoo2018 for finishing! Have a great vacation.

I dropped in at Radiation clinic this morning asking to see the RO. Was able to be seen by the resident and the nurse who checked my skin and said that the absence of pigment on the areola is not unusual and not to worry about it. I explained that I never peeled. He said I could stop applying the Miaderm because my skin looked healed. I tried to make this my 6 week follow up app't at 4 weeks but it didn't work. The RO was over scheduled and no time for walk ins. The resident said after the next app't there will probably be imaging (MRI maybe) to determine if the radiation worked, I don't know they would determine that since the tumor was removed prior to radiation treatment. I do understand your frustration with showing up for only a few minutes and seems like it's not really worth it. Especially if it costs a lot and in my case having to travel so far.

Good news~I had the arm pit ultrasound this morning and it was determined that the lump feeling like a marble was a 1cm seroma, not a lymph node. It looked like a deep black hole on the imaging. I feel much relieved. The surgeon drained it today and I will likely have to have it done again as mine usually fill up again. At least temp relief from nerve pain.

flowergal,

That's funny, thanks for the laughs.

Marigold8 · May 2018

Congratulations, metoo! Have a great vacation!

Veeder, glad your mom is out of the hospital. Hoping your dad recovers quickly. And I can only imagine how relieved you were to discover that the lump was just a seroma.

I see my RO later this week, for the second time after rads were complete, in part because he was fairly concerned about my skin the last time I saw him. But it's really improved now and I'm hoping to extend the time between visits.

It is frustrating to see all of these doctors for 5-10 minutes and feel unsatisfied afterwards. My RO never seems hurried, which I appreciate. When I saw the MO last week he did schedule a bone density for me, which I'd worried he was neglecting earlier.

kaywrite · May 2018

So, my RO says the first follow up visit is to assure the radiated area is healing normally, most especially if there are wounds of any kind. Cited course of treatment for problem skin, etc.

On another note, I checked in at 10:00 and saw the resident at 10:30, then the doctor at 10:51 - but she did spend about 20 minutes with me. I'm to begin massaging the breast when applying a lighter moisturizer - goodbye Aquaphor! Healing well. Don't need to see her until January since I am seeing the MO in late July.

No more doctors until July 20th. Hurray

flowergal · May 2018

Veeder, glad you enjoyed a laugh. I married my hubbie for his sense of humor. ( and he is cute)

Kaywrite- glad you had a satisfactory visit. Are you massaging the breast to decrease swelling?

I read that in an old blog somewhere that if you do, it helps the lymph fluid move through the glands . I started doing that the other day to see if it helps as my boob is still swollen but not too sore.

Marigold, glad you are doing better.

kaywrite · May 2018

flowergal - yes, massage to break up any pockets of fluid. I'm mostly ok, but there are sore spots when massaging, RO said it is normal and temporary. Also important to stretch out the arm shoulder breast area ASAP for mobility and to fight permanent scar tissue in the wrong place.

kaywrite · May 2018

Veeder - thank goodness re the seroma. Every little bump the RO felt today I was like is that normal? Yes. Is that? Yes. That one? Yes.....

Veeder14 · May 2018

Hi kaywrite,

Yeah, I know what you mean. I don't like feeling stuff I can't see. I was referred to OT to get fitted for a compression sleeve because I'l be flying and she worked on both my scars a little bit to break up the scar tissue. She showed me how to do my own massage. My arm pit is really sore and having seromas, even drained ones make it more sore. My breast scar isn't sore but it feels like a gigantic hard blob.

Dlpaquette · May 2018

I am glad to see everyone living on to the next phase. I am surprised u ws never even made a follow up appointment although I was told they wanted to see me in 3 months. No instructions in how lling to use the aquafor or any pay radiation instructions...

I did get to the bottom of my pain, I just figured the amount of pain I have had is normal but I have not been sleeping, advil and extra strength tylenol were not even touching it, I finally broke down and took pain meds which took the edge off but still considerable pain (I cannot take heavy duty pain meds). Finally last night I decided to just stop the silvadine and use just aquaphor, today I am a whole new person, I am sore, it doesn't feel great but it also does not feel like someone is holding a hot branding iron to my breast and armpit 24/7. I wish I would have figured it out weeks ago because I have been so miserable. Today I think I have said about 20 "I can't believe how much better I feel!" I have spent weeks walking around with my arm hugged to my chest because any movement was causing unbearable pain. I just feel so relieved that the worst is now behind me!

Veeder14 · May 2018

Hi Dlpaquette,

I'm so glad to hear you got to the bottom of your pain. Unfortunately, many times the patient has to figure it out themselves. I hope the pain keeps decreasing for you. My post radiation instructions are to keep applying the lotion until the 6 week follow up. Some patients I met in the women's locker room told me that they don't come back and see their RO until 3 months. It's just a guess but my doctor is the medical director and has residents doing research, I wonder if his patients are included in the research and that determines how soon they are followed post radiation.

Nancy116 · May 2018

Hi Everyone,

Veeder- I'm so glad your lump wasn't serious. Also glad to hear your mom is out and good luck with your dad.

metoo- Congrats on finishing!

Dlpaqette- Sorry to hear you have been in so much pain. Glad to hear it's getting better.

I have a follow up w/ the RO on the 15th which was only two weeks out because of the condition of my skin. I had a lot of pain too. The pain has defiantly gotten better but I still have a few bad spots that still need to heal.

Hope everyone is healing well.

operamom1 · May 2018

Almost 8 weeks later -- thanks to a break because of a wonderful allergic reaction -- and I got to ring the bell today! It's been an emotional day -- more than I expected it to be.

I haven't been very vocal on here, but I just wanted to express how much this message board has meant to me on this journey. I really do wish all the best for all of you and thank you for being a support. I also appreciate everyone posting and allowing me to be a part of your journey too -- giving me the chance to pray for you and send good thoughts your way during your struggles too.

I pray everyone heals well!

kaywrite · May 2018

dlpaquette - I know, re the aquaphor, right? I am swearing by its greasy name. I was going to stop using it, but:

I have started peeling, three weeks after the last boost. Not peeling as in sheets or flakes of skin, but the slow procession of brown skin giving way to the pink skin underneath - under my arm (whole breast area), and in the boost area. I think keeping it Aquaphored is helping it wash off with gentle washcloth exfoliation when I shower in the evening.

Re: RO follow-up visits: Meant to say, when I saw my RO this week, she said I didn't really need to see her for 3 months after the last boost. I was like wth with the schedulers? My reward - I don't have to see her again until January. Knock wood.

Veeder14 · May 2018

operamom1,

Congratulations on getting finished with radiation! I agree, everyone's support really helped me get through treatments. Stay in touch.

Marigold8 · May 2018

Dipaquette--So happy the Aquaphor is helping you. Glad you figured out what you needed to do.

operamom--Congratulations! What a great day for you!

Saw my RO today. He said I'm healing as he would expect; to stop using the Miaderm when I run out (use ordinary moisturizer if I think I need it); and I don't need to see him for three months. He also said that he's not convinced there's adequate evidence to do mammograms at six months, which some oncologists recommend. He's going to leave that decision up to the SO, who I see in August.

Struggling with my anastrozole, as I noted in the other forum. Joint pain has become a problem and having some memory issues. We'll see how things go in the next weeks. I may need to switch to a different AI.

Dlpaquette · May 2018

I still wonder why we have to follow up with so many cancer specialists, between the MO, SO and RO it feels like over kill. If they were being treated etc I would understand but if I am just seeing them all to just say "Hi, how are you doing. " it is a huge waste of time and money. I guess I will find out soon enough as I have my first MO follow up on Wednesday.

Veeder14 · May 2018

Hi,

I totally agree, why see all these specialists and so often. For me that means the almost 4 hr round trip from home to the hospital and back, messing up my entire day. It feels very disorganized. The RO wants to see me in 2 weeks, then get imaging (?), and come back in at 3 months. I have follow ups with the surgeon I guess until this seroma issue is resolved. The MO wants me to come back after taking Taxmoxifen for 3 weeks, plus have a mammogram 5 months after the finishing of Radiation. Oh, and an app't for a mammogram for the other breast soon which was due in May. All the specialists see patients on different days, which makes this even crazier. Plus, I still have follow up for melanoma with scans, etc., UGH!!

flowergal · May 2018

HI All,

Sounds like we are all slowly healing. I have my f/u with RO about 5 weeks post Rad. May 25 and I expect it will be a waste of time. But even though I feel like a flasher or pervert if i ask him to look at my breast but I i will if i have any concerns about whats normal or not.

I see the MO 8 weeks after starting anastrazole to see how I'm tolerating it. I could do that by email !

I see the surgeon 6 months post op and will have mammogram on treated breast at that time. The good thing for me is I live about 5 minutes away from the cancer center so I just bring a book while I wait !

Happy Mothers day to all and have a great weekend!

Paco · May 2018

I've decided that I feel comfortable not seeing the RO in 2 weeks but I will keep my BS appointment in August. I expect to have to do another mammogram... Ugh. I would like to stick to once a year mammograms but I suspect I'll be on a more frequent regimen.

petey111 · May 2018

Hi all. I am about a week and a half out from radiation and I have a question.

Did anyone have peeling/irritation on the face and neck way after chemo or right after radiation? I don't know if this is an allergic reaction to all the tree pollen or if it is some odd sort of side effect/healing process from chemo and radiation. Here's a picture. Fair warning - I look awful!!!!! I even put on a heavy moisturizer two hours before this. It's so bizarre. It's been going on about three days.

Nancy116 · May 2018

operamom- Congrats on finishing!! Now the healing begins.

Petey- First off you don't look awful, you are still your beautiful self. When did you have your last chemo? Taxol does have a skin side effect. If I were you I would go get it checked out. I know that's the last thing you want to do is see another doctor but they might have a better cream to help. Good luck.

Hope everyone else is healing well.

Happy Mother's Day to all the mom's! Have a wonderful day.

petey111 · May 2018

I did get a rash at the end of Taxol, but that was Feb. 21st! It's crazy. It's worse today, so I think I'm definitely going to have to do something. Even though I don't want to darn it. I just wanted a couple doctor free weeks. Oh well. I do still have a steroid pack refill that the RO gave me during radiation. It's the same thing that the MO gave me for the taxol rash....but it's probably bad to self-medicate. :-)

Happy Mother's Day everyone!

MARCH 2018 starting RADIATION

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