Anyone else? Lumpectomy/Hormone therapy/Radiation Only

lunchlady61

Hi all... I wanted to start a new thread with people similar to me who have had lumpectomies and who are now or have gone through radiation (no chemo).... I have read the previous posts but it seems they get so long and specific to certain people... (no offense to any of you!  I have garnered some valuable information) and they are hard to follow after a while.... I have had my lumpectomy (May 28th) and have already started taking Aromasin (about 3 weeks ago ) and will begin my radiation on or about July 22nd.  I have had my simulation appointment and got my tatoo marks etc.... It is interesting to me that there are so many different protocols in place with this stuff.  My RO has only told me to get Udderly Smooth Udder Cream. I have been told that they will also advise me to use corn starch applied with a blush brush to keep my breast dry.  Other than that I am anxious/dreading this whole ordeal, but also ready to get it going and overwith.  Any and all advise as to clothing, lotions, soaps, deodorants, oils, timing, etc..... would be much appreciated.  I will know more about my actual dosage and number of treatments soon but in the mean time I am trying to learn as much as possible.  I have been walking and swimming more to try and get a little better in shape to hopefully fend off some of the fatigue issues that may arise.

whitebat

HI Lunchlady61

I have just started treatment for DCIS, and understand your questions.  I have had the added advantage that where I work, one of the people that I work with is a former oncology nurse, so she has been a god send on getting started with clothing and what to expect and why.  I have found that wearing a bra even after the first treatment was uncomfortable.  I have found as comfortable substitute.  It is made by fruit of the loom and is a type of tank style sports bras.  I ordered them from Walmart.com and I love them, they are soft 100% cotton, with covered elastic unlike tank tops with built in shelf bras.  I don't like sports bras because of the chunk of material that runs between the shoulder blades, so this is a wonderful alternative as it has straps like a normal bra.  They are inexpensive and come in a variety of colors.

Lotions, I don't know about as my skin has not started to burn, however, only natural deodorants, no antiperspirants...they have aluminum in them and will interfere with the radiation treatment.  So deodorants only...again, Walmart carries a type of deodorant that is talked about in the coping magazine, it has the pink breast cancer ribbon on the packaging.  If you are like me and actually sweat, not wearing antiperspirants will be a challenge and keeping the underarm dry and scent free a bigger one.  I use flush-able wet wipes to keep the underarms clean and will be trying baby powder as well.  I have been told to avoid the pool and hot tub because of the dry skin issues and the chemicals.  Right now, I wear what I want, except for the sports bras, and often layer clothing with sleeveless tops and sweaters for summer to cover the fact that I am not wearing a normal bra.

As for radiation treatment, each person is different.  I personally have experienced a burning sensation on the first treatment.  I was nauseous after treatment number 4 and it has not gone away...feels like early morning sickness...I am also more emotionally sensitive...again like early pregnancy hormones, the littlest things can set off a crying spell, go figure...you would think that at age 42, that would not be an issue, no such luck.  but like I said, all people react differently.  I also experienced shoulder and breast pain immediately after treatment, and my skin is beginning to get a bit itchy as if I have had too much sun.  Tylenol is helpful, and I am just now starting to experiment with lotions.

On the up side, I seem to have a burst of energy right after treatment and come home and cook dinner, clean, etc. until I run out of energy (after about 4 -6 hrs later) and then I crash and become very tired.  Fortunately that is about bed time so I am good to go there.  I have known of others that have that energy burst after treatment and then crash afterwards.  So I take advantage of it as long as I can.

The best advice from both of my aunts (1 is a 10 year breast cancer survivor, and the other an Oncologist PA) is to listen to what your body is telling you.  Sleep when tired and take advantage of the energy when it is available, wear soft clothing, nothing that may be scratchy, and as your skin gets more sensitive, soft cotton t-shirts may be best.  

Good Luck!

sandiesau

hi ladies I had a lumpectomy for stage 3 cancer in oct 2012   finished radiation in feb. 2013

THE RADIATION HAS PERMAMNENTLY BURNED MY LUNG and now I'm left with a breathing issue If I had it to do over again knowing what I know now I would never have agreed to have radiation. To make  matters worse tomoxifin was the drug of choice for me and the side effects are horrendous.I hope you all have better luck than I did. love sandi

lunchlady61

Hi ladies... thank you for the input.  It is so helpful to have the knowledge of people who have gone before to give advise to us that are just getting started....  Sandiesau, I am so sorry to hear that you have had a bad experience... your post is scary to read and I am scared of the side effects of radiation too, but also scared of not doing them.  I appreciate that you shared this with me tho'.  And I am fortunate to have already gone through menopause so they chose to put me on aromasin and so far I have had very little problems... I have only been on it about 3 weeks but so far so good... I am mainly worried about joint/muscle pain and bone loss... I have upped my calcium and vitaminD per my medical oncologist and I pray everyday when I swallow that tiny little thing that it does it's job!!! 

Whitebat... thank you for the info on the bras.... I found a couple inexpensive non underwire, very soft cupped (but still lined) bras by Hanes at Walmart the other day and I'm going to give those a try but time will tell... since you said that you get a burst of energy, I might schedule my radiation for early mornings because I go to work at 10 am and work til 2 pm so then I can come home and take a nap after work.  I work in a school cafteteria and wear loose fitting red smocks so I may just go to work with nothing on under it!!! lol... but seriously I probably could wear it with a tank top and no bra and nobody would notice.... I may just discover a new freedom!!!  OH the thing we must endure in this journey.... as far as deodorant and lotions and creams to help with the radiation effects, I will take the advise of those who have gone before me and hopefully the ladies at the radiation center will be helpful....I know one thing they tell people to use is corn starch....  brush it on with a blush brush to help keep it dry.... Do you still feel pain in your lumpectomy area?  I have random twinges and sometimes downright pain lasting from a few seconds to several minutes off and on... I wonder if we will ever feel normal again?  It seems every ache and pain anywhere now gets notices and thought about more. 

Again I thank you both.... you have my positive thoughts, support and prayers!  I wish us ALL the best of outcomes.

eberner

I participated in a study of the effects of "curcumin" for the prevention of burns from radiation.  it is from the spice tumeric.  You can look for more info on the topic, but I am convinced it helped me, and I still take it for it's anti-inflammitory properties.  Good luck to you!

corky60

I had 33 rads including the 5 boosts. 

After #4 there was some nausea and again at about week 4 the nausea was off and on.  The RO said that breast rads don't cause nausea.  Ha!  Oh yes they did.  Candied ginger seems to help alot.

The RO gave a list of creams and soaps to use.  I used unscented Dove soap for sensitive skin.  For the first three weeks I used Avalon Oganics Unscented Aloe Hand and Body Lotion (we had this at home already), then switched to Fruit of the Earth Crystal Clear Aloe Gel.  These went on the skin right after rads and a couple of times later in the day.  At night I used Eucerin Original Healing Soothing Repair Creme.  The RO nurse said that they really didn't care what I used as long as the skin stayed moisturized.

For swelling I used ibuprofen and/or a compression bra if I could tolerate it.  Lots of times I didn't wear a bra.  At about week 3 it felt like there were dozens of tiny electric shocks on the skin with some occasional sharp zaps.  The RO said that the nerves that were cut during the surgery were trying to reconnect.  Mepilex seemed to help calm this sensation down.

I just finished on Friday.  There is some mild skin break down in the crease with some burning but nothing major.  At about week 3 there was a mild fungal infection there but generic Lotrimin helped.  The skin feels rough instead of smooth. 

The best thing was when the RO switched to boosts to the second to last week and then went back to the whole breast for the last week.  This allowed a bit of the reddening to go away for awhile.  It turned to tan and the RO nurse said that tan means it's healing.

Phew!  I start Aromasin in August so am taking a tiny break just to learn all I can about that.  Fatigue hit at about week 4 and today I feel wiped out but it feels so soo good to be done with rads.  The techs were so nice, the other folks in the patient waiting room were so interesting.  Funny but I am going to miss those people.  It was so interesting hearing other stories.

You can do this, it is nothing to be feared, you are being good to yourself so go for it!

Anonymous

Congratulations on finishing, Corky!  Only 10 more of 34 to go for me, 2 whole-breast and 8 boosts.  I also had a wee bit of nausea at the very beginning, but for me a peanut-protein bar helped.  Fatigue - I also get that sometimes but usually just work through it and it goes away (or at least doesn't become debilitating).  Like you, I have really enjoyed some of the people I've met on this journey.  I even exchanged email addresses with a woman who was always in the waiting room, as she escorted her mother for rads each day.  And also with the street-car driver who drops me off in front of the rads facility each day (I'm taking public transit 1.5 hours each way to rads to save gas $, and the streetcar is the last 20 min. of that trip.)  The driver is a cancer survivor herself (uterine) and has brought me treats now and then--ginger-turmeric tea,  little calligraphic hand-made "sayings" she drops off at cancer centers, etc.  It's been such an interesting journey and there have been some real positives--the people I've met, my own personal and spiritual journey--mixed in with all the negative physical stuff.

It's interesting that you were part of the curcumin study, eberner.  I've been taking it daily for the past few weeks and so far have very little in the way of skin irritation/issues.  I don't know if the curcumin is part of that, or any of the other supplements I've been taking, or if it would have happened that way for me anyway, but good to read that it seems positive  Can I ask how much they had you take and at what time of day?  I've been taking about 1500 mg and used to take it in the morning but then someone said their Dr. recommended taking it at night, since that's when the body does a lot of healing, so have started doing that.

Lunchlady, like others have already said, I, too, have found bras to be really irritating.  Actually some fabrics, as well, when I go braless under my tops.  Soft cotton is good.  Some synthetics are OK but some irritate me.  I picked up a couple of stretchy, non-underwire bras from bali that seem to work OK when I HAVE to wear a bra, but at home I usually just go topless.  As far as lotions, when I started out I just used 99% aloe gel right after treatment, and sweet almond oil several times throughout the day.  I've gotten a little bit itchy in this last week, so have switched out the almond oil for a 50-50 mixture of hydrocortisone cream and aquafor.  Pretty greasy, but soothing.  I really slather it on at night (and take my curcumin) and find any pinkness I had during the day looks milder in the morning when I wake up. So, I think I'll make it out of rads relatively unscathed.  My RO did warn me, though, right from the beginning, that it was inevitable that a tiny portion of my lung would be getting clipped by the rads.  However, he said it doesn't usually cause issues.  He's been doing it for 30 years and hasn't ever had a patient with issues as a result (but that doesn't mean it doesn't happen sometimes, as was posted above).

Next hurdle -- anastrazole.  Already taking Calcium and D3 and trying to get my cholesterol down with some beta-sitosterol supplements.

Rads - 24/34

lauribob

I am at treatment #9 of 21 for DCIS. I have had some mild skin inflammation that goes away after my weekend break. Also some stabbing pains in the breast that my RO said were probably scar tissue at the surgical site doing something with the severed nerves. Other than that, I am uncommonly exhausted all the time and have had some nausea and diarrhea for the past several days. I'm not sure if that is a direct side effect or a result of being so run-down - it's a 2 hour drive each way for my treatments. My radiation center gave me some excellent cream with aloe vera, vitamin E, and I can't remember what else. My sister also made me up an infusion of olive oil, almond oil, comfrey, and calendula. I am using both of these every day and the skin issues are not bad so far. I found an arm and hammer deoderant that is aluminium free that actually works. I was told to avoid pools and hot tubs, extreme heat, and sun. I still go out and work in the yard, but make sure I have a shirt that covers my entire breast area - no low cut tank tops. I wear a stretchy sport bra pretty much exclusively now - it's just softer and less binding. I was beginning to get a red line at the crease of my breast and that has gone away since I switched to the sport bra. Almost to the halfway point and hanging in there.

lunchlady61

Hi all..... sorry I have been gone from these boards for a long time..... I just needed to take a "break" from reading everyone's stories for a while because it really gets in your head and I decided I needed to take what I had learned and add it to my own inner voice and do what I had to do and get through radiation without worrying about what others were experiencing.... I know that sounds very selfish of me but I was feeling so overwhelmed with it all that I had to just stop... it becomes very obsessive to read these boards and search for just the right answer that you are looking for to ease your fears.... I learned that although some of the information is extremely helpful.... a lot of things you read here are very scary and not neccessarily the norm.  I am happy to report that I am now DONE with radiation!!!!!!!  I made it through 25 whole breast treatments and 5 boosts!!!!  I made it with very little problems..... my nipple area is the only thing that really bothered me throughout the process.... it is still peely/itchy but nothing I can't deal with..... as for the rest of my breast... it is speckled and feels a little rough and is tanner than the other one..... I had no breakdowns.  I used Fruit of the Earth Aloe vera gel right after treatment everyday and a few times during the day.  My Dr. did prescribe hydrocortisone cream for the itchy rash I got about half way through..... as far as fatique.... about half way through is when I started noticing it more.  My drive to the treatment center was only about 25 minutes and sometimes driving home I would be very tired but I would go to work afterwards and as long as I worked through it I was fine..... The 5 boosts at the end were a little harder and I did get red in that area but it didn't hurt or feel hot or anything..... Like you all, the people you meet along this journey are interesting and puts things into perspective sometimes...... I am BLESSED beyond belief to be here and thankful that I had nothing worse...... It is strange that you go through 6 weeks of seeing these nurses/techs and how you feel you will miss them...not the treatments... but them..... this brings me to the end of my treatments.... I am already on Aromasin and have a few follow up appointments so here I am now wondering what now?  I have done all I can do with the most positive attitude I could and I have to move on from here and try and find a new normal and not let cancer rule my thoughts and life...... until my next mammogram I am doing my best to put this behind me!!!  I give you all my love and support and prayers that each of your journeys through this hurdle in our lives leaves us better people than we were before.....Take care everyone!!!!