Intro / just started rads

gemini4 · February 2013

gemini4 · February 2013

Hi Ladies,

I have been lurking on the boards here for a few months. I have found the information and support very valuable, and now I'm mustering up the courage to finally post and introduce myself!

I am 48, pre-menopausal, felt something that didn't seem right in my left breast just before Thanksgiving 2012. Thanks to a tenacious radiology team who ordered an MRI, the architectural distortion that they initally saw on my murky 3D mammo scans was found on the MRI to be a 1.8-cm mass (which turned out to be ILC). I knew nothing about ductal, lobular, tumor markers, hormone receptors, etc. ... but I'm a fast learner, as I'm sure most of us here are!

After my second surgery (first surgery had some close margins) last month, I finally started rads tx yesterday. 2 down, 28 to go. I am surprised how much I seem to be feeling it. It was my understanding that I'd feel no side effects for a few weeks. I do have some pre-existing psoriasis on my chest, which can make my skin itchy. I've been preparing my skin since last week by slathering on creams, alternating between Seven Cream (a natural cream which is mostly calendula with some other ingredients like honey and neem oil) and Jean's Cream. Yesterday (my rads time is in the morning) a swore I was feeling some heat coming from my chest. Sure enough, before bed it looked like I had a sunburn on the left side of my chest.

This morning the rads tech said it would be too soon for a reaction. However, one of the nurses said sometimes an autoimmune reaction can occur, which makes sense since I have some psoriasis on my chest. She gave me a sample of My Girls cream, which I slathered on before getting dressed. It did seem to take the edge off. I will use it along with the Jean's Cream and Seven. Tomorrow is the weekly rads oncologist visit, and of course she will be looking at my skin.

Aside from the skin reaction, I had several hot flashes last night -- and I haven't even started tamoxifen! I have had hot flashes on occasion in the past, being perimenopausal, but I can't help but wonder if the radiation heat is triggering them.

I have started getting acupuncture and taking some Qigong lessons to help with my energy level and balance during treatment.

I know the mind is a powerful organ, but I'm wondering if just my awareness that I'm undergoing radiation is causing me to feel hot and prickly ... or could it very well be a systemic reaction?

Thanks for reading and for the wealth of support and information here.

Nat23 · February 2013

Jemini4,

I'm starting my radiation tomorrow. Today was my practice run...I was so nervous being under the massive radiation machine I broke out in little red hives all over my chest. I know it's not the same as what u are experiencing but reading ur post made me think of how red I got without even being radiated on. I hope the rest of the treatment goes great for u!!!

I just purchased some Jeans Cream...going to start using that as soon as I get it!!! Let me know how it works for u.

Best wishes! I will be thinking of u!

gemini4 · February 2013

Nat, best wishes tomorrow! Don't let my experience scare you! I'm really hoping it's going to get better, and I think it might.

I recommend that you definitely be vigilant about your water intake. My RO suggested my feelings of malaise might be dehydration.

I hope the Jean's Cream works for you. I think the most important thing is the regular application of some sort of cream.

Good luck, and I'll be thinking about you!

Nat23 · February 2013

Thank u they told me to use aloe and if it starts getting pink try other things. So I bought 99% aloe cream from trader joes and lathered up with that!

Yea...drink a lot of water! I stayed very hydrated going through chemo and it made a huge difference. I even start my days with coconut water then drink regular water throughout the day. (It's expensive so I just do one a day...but it really refreshes ur body)

gemini4 · February 2013

Hi Nat,

I hope your first day went well yesterday!

That's great that you're drinking a coconut water each day -- I imagine it would be very helpful. Unfortunately I can't get past the taste of it; it's hard to describe, but I don't care for it at all. I have been squeezing fresh lemon juice to my glasses of water; makes them go down easier, feels more refreshing and cleansing, too.

I had an acupuncture treatment yesterday, and it made a huge difference with my energy level and feeling of malaise. Also, the rads center at my hospital offers a (free!) 15-minute session with a massage therapist every Thursday. She is wonderful, and I felt so much better afterwards! I'm so grateful that this is available at my hospital.

Nat23 · February 2013

Wow...a massage? I'm gonna see if my dr offers that that would be nice.

I hear you on the taste of coconut water...I don't like it AT ALL...I buy the flavored ones. My favorite is pineapple, it kind of takes over the coconut taste. They also have fruit punch and some other ones. and I also hold my breath when I drink it...lol. I'm gonna try lemon in my water. That sounds good!

How is your skin doing? Any changes yet?

dbm75 · February 2013

I'm just starting rads too, have my panning session tomorrow, then wait a week or so while they create my plan, then a dress rehearsal, then good to go. I figure that puts me at a late Feb/early March start date for my 33 sessions. I hope to work thru them, but I've been told SE's, such as the fatigue, can get tough towards the end. I work in an elementary school with special needs kids, which is a pretty physical job, and on third floor, no less, which I am climbing up and down a gazillion times a day, so we'll see. I want to work as long as I can bc it keeps me busy and therefore distracted from this whole cancer thing! But who knows, I'm sure there will be days when the last place I want to be is work, and will welcome time off to rest. I am glad it'll be close to where I live, work, and where my kids are in HS, which will make the logistics easier!

Yawls · February 2013

Hi dbm75 and all, I am on number 30 of 34. I have worked every day through rads. I must admit the last couple of days are getting a little tougher. I work as an administrator in a large school district and split my time between the office and working out in about 15 schools. I go in around 7:30 and leave each day at 3:15 for my 4:00 rads. I have to drive for 40 minutes to get there, but I am usually home napping by 5:00. People seem very surprised when I tell them I have BC. No chemo so didn't have to go through the no hair thing. My point though is work has been completely doable. I love my job and feel good doing it! At treatment 28 my skin started to break down under my breast, by 29 it really started to get uncomfortable. That was Friday. My rads team is terrific they took good care of me gave me some stuff that almost acts like skin. Draws the heat out of the area and calms it down. Problem is, no bra...for a set of Ds that a little intimidating:). Today looks like an infection. I'm waiting to see how I tolerate pain meds and antibiotics...talked to the bosses about going 4 hours a day for the next couple of weeks as I finish up and heal not sure yet but it's 3 in the morning here and I am typing and not sleeping so...well see. This really is a crummy situation we find ourselves in, but the alternatives are just to much to think about, so we do what we gotta do and like everything else we do what we need to and time marches on. Hang in there, you'll be fine, assume that you can work, and you do!

donster · February 2013

Good morning ladies,

I just found this thread and thought I would jump in and ask a few questions if you all don't mind.

I was diagnosed in October with ILC and had a bilateral mastectomy in November. I will finish up chemotherapy this week and then as I understand will take about a month off and then begin 6 weeks (30 rounds) of radiation. My planning session with the radiologist is scheduled for March 8.

So that said, I wonder if you can share some info/experience with me?

1- did you all prepare your skin ahead of time for the radiation?

2- are there particular creams that you found more beneficial? I head a lot about emu oil but know nothing about it and did not see that anyone was using that.

3-by chance does anyone have tissue expanders in? I had TE's at the same time as my mastectomy, obviously did not know then I would need chemo and rads. Am wondering how you tolerated this if you have TE's too. I am a bit nervous about this variable.

Thanks so much for any info you can share. I truly appreciate it.

I hope you are all doing well today.

addisonse · February 2013

I'm interested to know about the expanders and radiation, along with the creams question. I'm starting rads next week and j have expanders. Wishing there was a board just for expanders and radiation since it seems to be somethinga lot of ssurvivors are concerned with.

Nat23 · March 2013

Hello ladies

I have expanders and am going through radiation. I had 12 out of 33 rounds so far. No changes in the skin yet. I have 21 more to go...will keep u posted

donster · March 2013

Nat23 - thanks for popping in. I really appreciate any info you can share. I am happy to hear that things are progressing well for you.

Addisonse - good luckk as you begin. I suspect we will travel this road all together.

Sita505 · March 2013

Good luck ladies. I have 8 rads left and now realize that I probably should have been drinking more water. I have been wiped out, running a temp and nauseous. I am also experiencing some severe anemia, so it is hard to separate out what is causing what. I am using Calendula during the day, Aquafor at night. I am now adding Silvedene foe skin breakdown which only started this week. It helped me in the beginning when I was freaking out over the rads to visualize a healing light when I got the rads. Sita

RMlulu · March 2013

Sita505 Thanks for sharing your skin care program & the healing light visual ) Congrats that your finish line is so close go girl!

Nat23 50 yard line good job & skin doing so well )

You ladies are encouraging )

MsW2012 · March 2013

Yawls: You expressed what I remind myself all the time, but I hadn't focused on it enough to put it into words. It is a "crummy situation" and we do push through and do it because the alternative is so much bigger. We do want to keep the cancer from coming back!

I have been feeling very anxious ever since my radiation simulation appointment. And just like with the chemo, the anxiety came on because I wasn't well enough informed in advance. (I start treatment Tuesday.) All I had heard and read was that people experienced a mild sunburn sensation on the skin. Nothing about fatigue or ultra-sensitive skin or having to go braless or special creams. I am trying my best to stay calm and keep it in perspective but I feel like a little kid being forced to do something I really don't want to do! Even though rationally, I am choosing to do it and there is very good reason for it. My blood pressure has been high this week, something I never experienced before, not with the diagnosis or any previous treatment. Maybe the psychological effects are cumulative too. I'll keep on praying, informing myself and communicating with others like us who are going through it or have been through it already.

On the subject of sharing with others: I am in a general cancer support for patients and caregivers, and I have found another breast cancer group that I will check out this week. For anyone who hasn't tried this, I highly recommend it. It's not called "support" for nothing!

Best wishes to all for healing and recovery. -Elizabeth

Sickofpink · March 2013

Glad I found you guys. And thansk YAWL for the tips, I am about to do mapping, but still continue Herception infusions (just finished the heavy TCH chemo). Water is a great suggestion I have been bad at that since the beginningl Was advised to get pure aloe, though.

Should we use it in advance or just for treatments? I have 7 weeks starting mi dMarch.

What's the no bra thing? I was warned implant might need to be replaced, but why rush it?

xo

RMlulu · March 2013

Finally got the go for Rads! Friday will be my planning & tattoos yippee! February has been the longest month. Relief that post op MRI was clear waiting so hard...so ready for this next step.

Congrats to those counting down to the goal line & rah to those who are dancing at the finish line!

Got my aloe cornstarch knee-highs soft boob sock cotton-t miaderm...

Sending healing thoughts to all!

Timbek2 · March 2013

Hi all. I'm popping in here. Did my 6/28 treatment today. Dr gave me miaderm. Slathering it on three times a day. So far so good. Hoping skin stays in tact and my implants stay where they need to be. Good luck to u all. For some reason I am hating rads more than chemo. The daily grind really gets to you. I just hate cancer taking so much from me. But I know it's just for a season. Thanks or letting me vent!

Becki

CarolynVM · March 2013

I'm having tx 26/28 today to be followed by 5 boosts. My skin is a bit itchy and if I scratch, it HURTS! I use a cheap CVS aloe cream, a prescription lidocaine cream an cortisone cream. The aloe cream is great for general care. The lidocaine helps if the skin hurts. The cortisone helps if it itches. For bras, I've been alternating between a cheap, stretchy cotton bra and a stretched-out old underwire. They're both good but I do enjoy going braless so get rid of the band around my chest. I should have bought larger when I got the stretchy cotton but I'm not willing to invest in a new bra for two weeks. I'm tired (sleeping a LOT) and have been depressed. The weekends are a welcome break and give me a chance to rejuvenate. They help me believe that I WILL feel better when I'm done. My breast had been sore, hard and hot but my RO recognized it as early lymphedema. I started PT last week and my breast already feels better. I will continue PT after radiation but it's totally possible the LE will pretty much go away. This was much harder than I anticipated but mostly it was emotionally hard. I had antidepressants and antianxiety medications but probably should have upped the dosage. This is do-able.

fd1 · March 2013

Hi everybody! I have an expander in and I will be doing # 20 of 29. I have been using emu oil and Glaxal Base. My skin is pink but generally holding up pretty well. One part that concerns me is the end of the scar near my armpit has turned white. The best way I can describe it is that the skin looks thin. I will see my doctor for my first skin check tomorrow as he has been on vacation. I'm so nervous, even though the technician has been looking at it everyday. I just really need this reconstruction to hold up as I have my wedding planned for June!

Does anybody know what causes the reconstruction to fail? I've just heard of it happening but I'm not sure how or why it does.

placid44 · March 2013

I have my simulation appointment on March 19 (next Tuesday). So far I've done chemo and BMX (February 12) with expanders.

RC1, I've been told that radiation can increase the chance of infection, or not healing well, or capsular contracture (when your body's tissue contracts around the implant) once you do the surgery that swaps out the expander for the implant. On the other hand, many women do not have a problem with expanders + radiation. It's quite common for women to try it. I was told the expanding has to be done before the radiation.

I definitely wanted to give implants a shot first since I prefer them to flaps. If mine fail, though, I'll use flap as a backup.

fd1 · March 2013

Thank you Placid44! So, if I understand you correctly, the problems will arise after the exchange not now? I can breathe a little?

Doesn't it feel good to check the items off? Surgery, complete. Chemo, complete. Radiation, getting there. You will find it goes pretty fast because it is routine. I am finding these last few days a bit long though. I think it's like the weekly Taxol where it bcomes long as soon as the end is in sight.

Anonymous · March 2013

Hi Ladies! I am popping in from the January chemo group. Although I won't be starting rads for a couple of months yet I am already getting anxious and trying to plan ahead. My biggest concern right now is that I will have to have my lefty floob over expanded, while the right remains a bit smaller. What is the best way to conceal this, expecially with summer coming. And, does anyone know whether I can have them "matched" after rads but before recon, such as having the right then further expanded or lefty taken down a notch? I'm already shopping for summer wear and wondering whether I need to buy tanks/bras and a small insert to make them match for the 6 months waiting between rads and recon.

I've seen some comments about bras on here. Do you need to wear one, or is it preferrable not to? I currently only wear tanks.

Thanks for letting me quiz, Ladies!

fd1 · March 2013

I saw my RO yesterday and he said my skin is fine. I do have some follucilitis (sp??) for which he gave me a rx cream. All good news!

Skimommi, it originally looked like my expansion was not going to be complete before radiation and I had asked my PS about this. He said that expansion is possible after radiation, although more complicated. It sounds like it is your healthy side that is not fully expanded though? Why haven't they matched it to the left?

I got this bra from La Vie en Rose which has pockets and inserts in it. You can take the inserts out and put whatever size padding you want in either side. The best part about this bra is it comes in all sorts of cute designs and fabrics. They have an online store. I think it retails for about $50 and is called the post-mastectomy bra. I found the pockets essential because if you just stuff your bra it shows. However, a lot of women on here mentioned just sewing on pockets to bras they had purchased.

RMlulu · March 2013

Hi y'all!

Today was my first Rad laser tag 1/30 ). Good to be moving forward in zapping any mutinous cells thinking they can hide in my breast...out of here. Pow....my dad&stepmom came for a overnight visit before heading to tennis tournament in Indian Wells and then on to play at their club tournament. Played games had fun but I can see that this is wearing on my dad- he can't fix this with a kiss and bandaide. But laughter and family are the best medicine very blessed!

Best wishes to all rad warriors!

pacools · March 2013

8/30 done for me and today was probably longer with all the double checking of measurements... really on a normal day I am done in 10 minutes! good luck

RMlulu · March 2013

Yeah Pacools doing good:)). 8/30 is moving right along & done is 10 minutes easy to slip in and out and not miss work. How are you feeling? Are you treating you skin?

Pray that this rad thing is a breeze ... Feels like we are getting control back and hazy has lifted. No pressure )

I'm so grateful for this thread ... encouragement!

Sickofpink · March 2013

HI ladies! Today was my 2nd rad - yesterday it was after my first Herceptin only inlfusion through my port (after finishing TCH chemo) so it was draining, but today, alone, it was easier. My rad team is nice and my dr is cute, so...Plus I had accupuncture earlier.

But I need bra tips! Is cotton best for a cami with a shelf bra or will a sports bra do? Already my regular underwire is uncomfortable and I'm a 32 D (with implants) so need support. I know the imlan might contract etc, but for now I still fel lik eI should fight gravity, I'm fightng everything else, right?

Carolyn, i hear you about the stretchy cotton, but have 7 weeks - and I'm still hairless and eyelash-less and trying to deal with work, so loathe shopping and prefer shopping online. Suggestions?

Thanks,

Leslie

RMlulu · March 2013

Sickofpink - SoCal beach rad center of course your dr would be cutie! Ha

I'm using soft cotton camisoles around the house with my breast out letting the aloe soak into skin. Ladies at my rad center recommended genie bra 2 sizes larger (now sort of a 36D) & it is comfortable...sometimes adding a soft sock to caress the breast for some added support.

Today was my 2/30 rad too!

Best wishes for your treatments...we are warriors!

Cindy

pacools · March 2013

RMlulu-I feel great and I have been putting aquaphor cream on at night with a tshirt it is greasy. They gave me 100% aloe for right after my treatment because it can be soothing but I haven't used it yet. I feel great not too fatigued yet. This is busy season at work so I am working at least 10 hours a day 6 days; I am keeping up. I meet with my RO weekly she suggest at night I could use baby powder under my breast to absorb any moist from the heat that collects. I have done that but not sure I see the need. My skin is only slightly pink for a few hours after, so far. Starting week three she feels I may feel more tired and should plan on shorter days, which I am prepared to do if needed.

Sickofpink - I am wearing Anita post surgerical bras which I bought online from Metro Medical in Nashville. My bs said no underwire but my large incision is on the underside of my breast. At home I use an all cotton cami with no shelf or a tshirt if I have applied the aquaphor.

After Monday's treatment I will be 1/3 done!

We are the warriors! thanks for all the feedback and input great group.

Intro / just started rads

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