ILC with big tumor

I will echo that radiation was not bad compared to chemo. Just having to go everyday was annoying.  Moisturize, moisturize.  I had expanders in during radiation.  We filled up until radiation mapping, stopped during rads and then continued to fill shortly after radiation was completed.  About 3 months after radiation was completed I had the exchange.  I was 40 at diagnosis and had a 10yr old and 5 yr old.  It was tough, but you will get through it!

rad onc or rad nurse usually goes over the skin care protocol - mine wanted nothing on my skin when i came in for rads and liked aloe (i got it 99% pure at trader joe's) but only applied after waiting a couple of hours after rads  .. but i've heard other rad oncs have other preferences ... and as i got further in to the treatment he gave me a number of lotions & potions to get to the finish line

there was no way i could wear a bra during rads though ... but in addition to the mast i'm very fair skinned (dad used to say ghosts had more color than me and to go outside and get a tan ... glad i didn't listen to him ...  ) and my rad field was pretty big ...

best of luck to you ... got to love those markers !

Hi ILC Mom...wanted to respond as I also was diagnosed in 2012 with ILC in my left breast...my tumor was 6 cm but it was half my breast as I was only a small B cup...because of that I had to have the Brest removed and so opted for a bilateral....my onco dx was low so I did hormone therapy and 30 rounds of radiation but no chemo.  Honestly I didnt think radiation was that bad really...but I also was not coming off chemo...I had some fatigue but not much...it was more emotional than physical I think...I was absolutely diligent about keeping my skin gooped up after treatment but I went to treatment with nothing on my skin at all....I bought some adult cotton undershirts and right after treatment I covered myself with Alo...or Aquaohor or Bio Oil...and put one of tjose on...Im olive skin and although I got a bit red I never burned....I would also shower at night right before bed and get my skin clean and that also allowed me to not have to shower before the treatment in the morning....good luck...I think after chemo the radiation might seem much easier...blessing out to you 

I used a calendula cream in addition to Aquaphor.  Calendula was recommended to me by ladies on this board.  I had a smooth time getting through rads, and 2.5 years later had a successful DIEP reconstruction.  The PS said that my skin and tissue on that side were nice and soft and squishy -- which is what was needed for the surgery.  I also recommend getting a camisole or two.  Bras can be uncomfortable.  There is a camisole on TLC specifically for rads which I used frequently.  

Radiation wasn't bad for me, just mostly an annoyance because of having to be there every day. I was coming off chemo, and given a month'ish in between to recover from the chemo a bit.

For me, at least, I was "fatigued" from radiation, but in a different way than from chemo. Radiation mostly just made me really sleepy, so I took lots of naps. The fatigue with chemo included a general feeling of not being well. Radiation didn't do that. When I wasn't sleepy, I felt fine. Additionally, during chemo I had issues with my hemoglobin dropping, and had to have one transfusion, and it was low enough at the end of chemo that if that hadn't been my last one, I'd have needed to have another transfusion, so I had extra fatigue to recover from, and wasn't fully back on track at the start of radiation. (Plus, I've never exactly been a bundle of energy to begin with.)

I am very fair-skinned, so was concerned about radiation a bit. I was advised at my RO's office to use aloe or Aquafor. To be quite honest, for most of the duration of my 30 treatments I barely even turned pink, and frankly forgot to even bother with the Aquafor most of the time, and never even bought the aloe; plus I had been told by my RO that it was okay to do *nothing* unless it started to develop issues. What I DID do was use Cetaphil  to wash the area when I showered, rather than any sort of soap. At about two thirds of the way through radiation I was told to keep doing whatever I was doing, that my skin looked GREAT.

During the final few treatments the skin DID begin to turn very red and and I had a little bit of oozing (ugh) near my incision scars from mastectomy. Luckily, I had an appointment with my MO at that time, and he looked at it and called in the nurse from their radiation dept. (the reason why my MO was at one office and my RO at another is a whole other story.) Anyway, their radiation nurse gave me something called Recovery Cream, and silvadene for the oozing areas, with instructions on how to use it. I think I only used them for maybe 4 or 5 days and then ALL the redness was gone and the broken skin area had healed. The Recovery Cream was awesome. Plus it felt great, and wasn't greasy. Bonus!

I will add that none of this ever did HURT, really, just some prickly feelings sometimes. It looked much worse than it was.

When I saw my RO the following week she was amazed by the speed at which all this had healed and turned back to just barely pink, so I told her about the Recovery Cream my MO's office had given me. She now gives that to her patients, as well.

re: Neuropathy: I had taxotere rather than taxol, and wound up with neuropathy in toes and fingertips. It was incredibly annoying but is slowly, SLOWLY getting better. At this point, just the skin of my first two fingers on each hand, and my right thumb are *barely* numb. I can definitely feel it if I touch something I shouldn't have while cooking, and while at first the the neuropathy in my feet extended slightly below the toes and made it difficult to go to sleep at night due to discomfort--plus made me walk like I'd had too many tequilas, plus walking much HURT!--now it's down to just some loss of sensation in the ends of my toes. I've never taken anything for it, though I am on Effexor which I have heard is supposed to help it in some way or another(?) My last chemo was on March 31st, so over 6 months ago (wow!) and if it doesn't ever get any better than it is right now, I'm okay with that. I can pick things up with my toes (lol) just like I always could, and I can walk as much as I want with no pain, so it's all good.

I don't get on here very often but noticed your post and I had a very large ILC mass in my left breast.  They had a very hard time measuring but at least 12 cm. 

I didn't find radiation hard at all.  I am also fair skinned but had my fair share of sunburns in my teens so my chest got pretty red and peeled, but it was healed by a week or so from the last treatment.

I am scheduled for reconstruction in 3 weeks and I am doing a mastectomy on my remaining right breast and diep flap.  I never thought I would be here, but I am, and you will be too before you know it.

Hugs to you, Laura.

There are a lot of shopping lists in the forums for chemo and radiation. I used the chemo list and tips there extensively--very helpful.

If you want to talk to someone about chemo or anything else, we are here. With the same chemo you're going to be having, I had it on a Thursday every two weeks. I did not feel like getting back to work (in my case) until the following Tuesday or Wednesday. By the Thursday a week later, I was feeling pretty good and had a good week ahead until the next treatment. You may want to structure your home schooling around your good days. Maybe light or no lessons one week and double up the next.

Popping on with more encouragement. I was dx'd in 2007 - 7.5 years - woo hoo!! My tumor was described as 10+ cm. It also was basically my whole breast. I had a kindergartener and a fourth grader and was so worried that I would be leaving them. My fourth grader is now applying to colleges and my kindergartener is in 8th grade - she barely remembers me being bald. Life is good.

I also had ACT and radiation. Radiation was a cake walk compared to chemo and just was a pain the butt. I used Aquaphor for my skin and when it got really bad they provided me with these strips (kind of like foam) that I could place on the raw areas so they didn't rub on my clothes. It really helped. I found that once radiation was over, the red/raw skin cleared up really quickly.

I had my expander removed and replaced with an implant 3 months after radiation was complete.

Good luck - you are in my thoughts!

Hi i had an 11 x 9 cm L breast, . Almost nobody has one big like we had. I am am so very pissed off that I did 5 useless mammo's. No one told me they could be that useless. I feel like everything  they inflicted on me in the name of "treatment " has low likelihood  of being enough to help keep me well. I am an ARNP  and do a ton of research because  I  want to be around for my 10 and 11 year old daughters. 

I get IV Vitamin C administered  to me by a Naturopath two or three times per month.  I also take 20mg Melatonin  every night,  Turkey Tail 5 grams per day. Curcumin 1000mg per day. Black Cohosh , ?mg/day. L-tryptophan  4gm/d for sleep  and mood improvement.  Also I noticed that while I was on the tamoxifen  (which i quit after 9months for several reasons, chiefly that it was giving me a terrible case of mood swings no matter what I did, that was destroying what little  quality  of life I  had left)   I  had developed  insomnia  that left me exhausted  during the day but strangely  wired when i went to bed.  So now I also take a thing called a Cortisol  Manager. Now I can sleep all night again..

I am also doing reconstruction surgery  number 10. I am doing fat grafting  with BRAVA system. I have gone from nothing to an almost B cup. I would  likely be all done except  the radiation fibrosis  they gave me has severely damaged my skin and i got 2 huge infections on two separate  occasions after my fat grafting surgeries.  Now i have gotten Hyperbaric  Oxygen  therapy on 44 visits which is  slowly  improving my skin. I hope my next surgery  on Dec 1st goes well  with no infection