New to the team....Questions and more questions

Likeachickadee

I was diagnosed last week and just met with my BS yesterday.  He's recommending lumpectomy with 6 wks of Rads and Tamoxifin.  I was in panic mode prior to that and was ready to say BMX, but he was very calm and very reassuring....this is provided that nothing else shows up in the MRI done on 12/9 or in the SNB scheduled with the lumpectomy on 12/30.

So my questions for those who are already on this team:  how long after surgery was it before Rads started?  Were you able to continue working?  How much did it interfere with your daily life, ie: Limited work schedule or full time or not at all? (I have a pretty sedentary desk job, 5 miles from home)  On a scale of 1 - 10 how bad is the fatigue, pain/discomfort?  What else do I need to know? I'm relieved after my consult yesterday, but very scared of "Radiation".....

Thank you for any info! 

Megadotz

Hi Likeachickdee,

I had radiation after chemo so I can only fully answer the last bit.  Working  through radiration is definitely doable.  I had mine first thing in the morning and went to work afterwards.  Other people do it after work.  I can't give you a good reading on fatigue because  I still had fatigue issues from the  chemo, so things stayed about the same for me because the fatigue from the radiation was increasing as the fatigue from the chemo was decreasing.   The radiation center I went to  is part of Hopkins and was very good at mitigating side effects.     I believe that Hopkins has been in Howard  County even longer than  in Montgomery County.

I'm sure they'll be other folks along who went straight from surgery to radiation who can give you a better take on the situation that you are facing.

Take care,

Meg

Moderators

Hi Likeachicadee,

You may find some information helpful on the main Breastcancer.org site to help alleviate your concerns about Radiation. Check out the following pages:

• Radiation Therapy, which includes what to expect with your type of radiation and any side effects you can expect.
• Fitting Treatment Into Your Schedule, which includes navigating the radiation schedule.
• Working During Treatment

We hope this helps!

--The Mods

Natters

hey chickadee - I am almost finished the exact same treatment that your BS is proposing for you, so I can answer your questions.

They recommend starting rads about a month after lumpectomy. I postponed mine because I wanted to do a competition, but I was definitely all healed up and would have had no problems starting a month out. What happened a few weeks after my lump was that I met with 2 new doctors: a radiation oncologist (RO) who examined me and would supervise my radiation tx, and a medical oncologist (MO) who examined me and then prescribed Tamoxifen. I did start the Tamoxifen that same day.

I did not have any side effects from the Tamoxifen right away, but some minor (tolerable) ones developed after I was on it a couple months. Everyone is different and some people do not get side effects. Others get them and then they go away after awhile. I first got a light vaginal discharge that did not worry my MO when I saw him for follow-up. It doesn't bother me because it's not so much that it soaks through or anything like that, and the MO assured me that it was safe because it wasn't bloody or anything. More recently I developed hot flashes. I'm less crazy about that, but hopeful that my body will make another adjustment and they'll go away before summer hits.

In terms of the lumpectomy, that was pretty easy surgery. I saw 2 surgeons and picked the one who seemed nicer and who proposed to do it under local anesthesia with sedation (rather than under general anesthesia). The biopsy kinda worked me up so I asked him for some kind of pill for my nerves and he prescribed an Ativan that I could take the morning of the surgery. With that in me, I wasn't nervous at all, and I didn't mind not having anything to eat that morning or getting another mammogram so they could place a wire in my breast prior to surgery. I was at the hospital all morning, most of that being waiting times, so bring something to read or play with like an iPad or iPod or really engrossing book.

If you're not the kind of lady who wears a sports bra - invest in a couple good, supportive ones, because your BS will probably have you wear it for awhile after your surgery, even overnight. This is especially important if you are well-endowed because the weight of your breast pulls the skin on your breast down if you are not well-supported, and that can tug at the stitches. I couldn't even see my stitches because they were under my skin - I had a bandage over top of some steri-strips. I did not have a sentinel node biopsy because I just had DCIS, so I can't speak to that experience.

After surgery, I felt great and other than a soreness in my breast as the drugs wore off, good as new. I couldn't wait to get home and eat some of the comfort food my friends brought me. I could have gone to work the next day, but decided to work from home instead so I could lounge aroundin my PJs. I managed the soreness with this little ice pack they gave me that you can tuck into your bra and regular Advil/Tylenol. I saved the stronger painkillers for night time because they lasted longer than the Advil, and they kinda knocked me out and helped me sleep great. Two days after surgery, I was able to walk a mile to a team meeting and a mile back afterward. It felt good to stretch my legs and feel the sun on my face.

As for radiation, I heard that it can make you tired so I scheduled mine for the end of the day because I am a morning person and wanted to be pretty alert at work. I am doing my last week of rads now and I haven't missed a single day of work. Like you - sedentary desk job, which I'm sure really helps! Keep in mind that many people do rads after chemo and their bodies are still recovering from that, too. Those of us who don't have chemo probably don't get tired from rads as easily. I didn't really feel any different the first 4 weeks, I'd say. Then I noticed that I would get tired maybe an hour earlier than normal each night, and I can sleep like a teenager again (8-10 hours a night, no problem). During the day, though, I am fine - no need for a nap.

My biggest issue with radiation are the skin side effects, but it's really hard to predict IF you will have them and if you do, how bad it will get. I would say, based on friends and people's posts here in the rads threads that my experience was somewhere in the middle, maybe on the good side of things. We all get different doses and exposures, too. For example, I did not need axillary (armpit) radiation. So mine doesn't take very long - one zap from each angle, and I am in and out of there very quickly if they are on time (like, 15 minutes or so).

Some women get a little pink and maybe itchy but no other skin problems. My breast swelled up a cup size or more, got very red and tender and then at the very end, the skin beside my breast (kind of under my arm and where my chest meets my breast) got raw. This only happened week 5! On day 25, I got some open skin there and I am dealing with that the last week, but it's very superficial and I never got blisters or open, weeping sores that a few women suffer. And nothing under my breast, which apparently is unusual if you are busty. Again, we all have different surgeries and skin issues prior to starting rads, too. I would recommend starting to moisturize that breast and under your arm well prior to starting rads, and investing in whatever soap and moisturizers that your RO's office recommends, so you have it all handy. Heads up - you are not allowed to wear your underwire bras or shave the armpit on that side during rads.

The biggest issue for me is that many people suggest that you don't wear a bra and I am busty, so it's uncomfortable for me not to wear a bra (especially to work - hello!). Between the swelling breast and the red, irritated skin, it finally became uncomfortable to wear even my largest and softest sports bras. I switched over to cotton camisoles with a shelf bra. They provide some support and the seam along the side of my chest is covered up, so it doesn't directly rub against my skin there. All my other shirts and bras have that seam, I notice. So if you are well-endowed, you might want to think about a bra in a larger size and some camis. Although you may not want to spend the $$ until you are sure that you are having those SEs.....

Anyway, I'm here to say that this has been a rough year because I have never had a health problem before in my life, pretty much. BUT - it is all do-able and I never had to miss any work because of this treatment approach. Meanwhile, one of my coworkers and one of my friends recently had mastectomies and I saw that their recoveries were pretty tough. Not just because of reconstruction, either, because the one just had a UMX with no recon yet. But it is a MUCH bigger surgery and you are not going to walk out of the hospital that day and be out tooling around the next day, either.

Hope some of my longwinded post was helpful!

Nat 

Likeachickadee

Thank you all for the information...since I'm on my information gathering stage, I am hanging on every word!

Nat:  I really appreciate your detailed account.  I know we are all different but it helps to hear what others have gone through as I get my mind in the right zone for this chapter. 

I've had a really rough year as well....actually 2 years.  Am just waiting on the final step of a divorce that completely blindsided me.  I'm not planning to let either event be more than a #%@# bleep on the radar screen when I look back next year.

Glad to find so much support and information here....good luck.

Natters

ugh, divorce - been through one of those are they are ROUGH/. I'm so sorry you are getting slammed with this on top of that  you sound like one tough chickadee, though. Sounds like you are planning to blaze through all of this, and not let it slow you down! I like the thought of looking back on this a year from now and hopefully it will all be a distant memory and not seem so bad.

Mandalala

Hi Likeachickadee!

I had almost the same diagnosis as you (as you can see in my signature). Surgery September 22 and radiation started November 7. 

For me, surgery was easy, but radiation and Tamoxifen aren't. Tamoxifen made me very nauseated and unable to keep food or liquids, so I stopped. I will try again in January, but I really don't know ... This seems to be an unusual reaction, but it does happen.  

The first month I of radiation I worked full time, which meant long days and a complete chaos at home, as transports and radiation took hours every dag. I took two weeks off in the end of radiation, as I had heard of the fatigue and wanted my coworkers to be able to plan for my being away. There wasn't much fatigue, but my skin didn't like radiation and needs to be handled very carefully, so I am glad I have extra time for that now. About bras … what Natters said, every word of it! And good luck!

Likeachickadee

Thanks Mandalala,

I hope your attempt with Tamox goes better in January.

I'm scheduled for a mammo on Tuesday to follow up on some areas that showed up on the MRI near the excisional biopsy area.  Not sure if that will change the course of action. Just when I thought I new what I was doing there's more uncertainty....geez.

judyfams

Just some things to consider.

Are you having the onco test done?

Speak to your RO about having the radiation in the prone position(face down).  This protects the heart, lungs and ribs better than the supine position (face up). One must be a candidate for this - the tumor cannot be near the chest wall and if you need your armpit irradiated you cannot have it done in the prone position.  I had my radiation in this position and it was not a problem at all.

Judy

Likeachickadee

Judy - thanks for the tips.  Haven't gotten to the onco test yet, but will check about that.

BarbaraA

Chick, take a tip from one who had rads and no burning. Use emu oil 3-4 times a days. It rubs in quickly and does not mess up your clothes. Google emu oil and radiation burns. I used it from day one and although my breast got tan, no red and no burn. My rad onc was amazed.

Likeachickadee

Barbara - thanks!  I'v heard of Emu oil, but never used it.  I definately will order some some before treatments start.

Thanks!

BarbaraA

Just head to your health food store and get some. It costs around 13.00 and I used 2 of them.

Elizabeth1889

I agree with BarbaraA.  I used emu oil throughout rads and had no serious issues with burning.  It is available on Amazon if you cannot find it in a store.

Momine

Megadotz, you wrote that Hopkins was good at mitigating SEs, can you elaborate a little? I start rads in January, and so far the doc has talked about giving me a prescription cream to use, but nothing else.

Megadotz

Hi Momine,

Have you had the simulation at the radiation center yet?  I  had a prep meeting with the nurse when that happened with a list of things to do, along the the prescription for the cream.

I finished up radiation a little over two years ago and here's what  I remember:

The cream was to be used  twice a day, but not closer than 2 hours before the radiation treatment.

No aluminum containing deoderant, Tom's Natural unscented was OK as were crystals that you get at health food stores.

Multiple vitamins were OK, but no other supplements without the RO's OK.  Vitamin C and other antioxidents were a concern because they could interfere with the effectiveness of the treatment.

Get plenty of water and protein in our diet.  I had some appetitte issues and the nutritionist helped me witha plan (she came in once a week to the radiation center.)

The radiologist used a baffle (plexiglass with holes) to mitigate skin reactions during the main portion of the radiation -- but not for the boost.  It helped on the breast area that was still pretty fleshy, but not so much on the axilllary (underarm) or supraclavical (collarbone) lymph node areas.

The staff was also very attuned to asking about various reactions.  When the collar bone area started looking moist, they gave me information about an astringent to use and the Cool-Magic Gel sheets for releif.   Both were for sale over the counter at the pharmacy in the same building.

The also had a index box with pre-printed prescription forms for various conditions that might arise like fungal issues in the fold under the breast.  They also had discount coupons for the radiation cream and some over the counter production like aquaphor (samples of that as well as the coupon)

I got asked if I wanted a referral for physical therapy when I mentioned discomfort from having to hold the position.

There was a once a week appointement with the RO to review how things were going -- ti was preceded by a work up with the radiation nurse.  Any issues were to be reported to the radiation nurse as they came up.

Overall the radiation center was very pleasant with pastem walls and artwork.  They tried to make as pleasant as possible, including dressing up for Halloween.  The radiation tech was dressed up as a pumkin and the RO was dressed as Sandy from Grease.

At the end of the treatment I got a diploma for finishing my "course of radiation" and a surviorship kit. 

I'll check my notebook when I get home to see if I forgot anything.

Hope this helps,

Meg

Elizabeth1889

Meg, Your rads center sounds amazing.  I wish mine had been half that good at considering the patients' emotional needs.  Wishing you all the best.

Megadotz

Elizabeth,

I'm happy with the radiation center as well -- they've been great.   My RO is co-director and heads up the cancer program for the hospital.

All the best for you too.

Meg 

Megadotz

Momine.

Found my notebook and the notes from the radiation center.

 Here are some additional notes:

• Shower or bathe as you would normally. Use mild soad like Dove, Ivory or Basis on the treatment area.  Don't rub the area vigerously with a towel -- pat dry.
• If you develop excessive dryness use aquaphor. Fruit of the Earth vitamin E  cream or aloe gel. Check any other dryness product with nurse or doctor before use -- some creams can adversely affect radiation cause more severe skin reactions. 
• Keep the treatment area clean, dry and open to air as much as possible. 
• Avoid injuring or exposing the area to sun. Note -- sunscreen not an option -- cover up for supra clavicle or underarm area.
• Don't use heating pads, hot or cold compresses, icepacks or hot water bottles on treatment area.
• Don't swim or soak in highly chlorinated water, such as a pool or jacuzzi without applying Aquaphor first.
• Treat the area gently - don't rub or massage the area. Don't  use any kind of tape in the treatment area. Don't wear rough fabrics like wool or corduroy over treatment area,  Don't wear anyting too tight fitting over the treatment area ( cotton t-shirts or cotton bras are OK)
• Let the nurse or doctor know if you experience pain, irritation or other  problems.

Looking at your diagnosis it's likely that you're going into radiation after chemo.  If it's right after chemo the RO said that the fatigue stays kind of level, because  the fatigue from chemo is declining as the fatigue from radiation is fading so they  balance each other out.   If you had neo adjuvant chemo, you have experience with handling fatigue -- the radiation fatigue is cummulative and builds slowly, not the  rollercoaster up and down of chemo.

Also the  skin effects are more pronounced for folks who had mastectomy that for those with lumpectomy.  This is from a discussion with my RO.  I had a lumpectomy, and a cousin diagnosed a few months after me asked about radiation -- she had a BMX -- I didn't want to mislead her so asked my RO if there is difference. There is. 

I hope this helps.  All the best.

Meg 

Likeachickadee

Meg - Thanks for the detailed information...that's a huge help. 

I'm going to Mercy Hosp in Baltimore for the lumpectomy next week, but they said they have a good practice they can refer to for RO and Chemo if needed in Howard County.  Where did you have your rad?

Megadotz

LIkeachickadee,

 Glad it helped.

I went through Suburban Hospital in Bethesda -- Radiation Oncology is in their out patient facility near where 270 empties into the Washington Beltway (495).  Close to Montgomery Mall if you know the area.

All the best with your treatment.  I've heard good things about Mercy in Baltimore.

Meg

maureens

Ladies,

I jumped onto this thread and cannot thank you enough.  I just received my diagnosis and will need radiation therapy--with what little research there is on my tumour, chemo is not an option.

It is really reassuring that life, such as it is at the moment, can go on through the treatment.  I find great comfort in reading about women who have gone through what I am about to begin--your rather positive experiences are so much better than the sterile booklet I was given yesterday.

Nat, thanks for the tips for busty women--braless is not an option.  I will also look into the emu oil.

All the best of the seasons,

Thanks.

TexasRose2127

Ladies-  I am new to this dissusion board since I am just now thinking about rads.  I will be finishing my chemo on FEB 22nd, TE implant exchange MAR 20th, then have appointment with RO the beginning of April.  I was wondering what to expect with rads & what products might be egffective for SE's.  Thanks for all the great insight & info.

Rose

momof3boys

Hi Rose, have you talked to both your RO and PS about rads and the timing of exchange? Maybe I'm confused...I'm in the middle of chemo and considering rads. Both my PS and RO decided to fill my TE's to a certain point and then stop filling them until I either decide to go through with rads or not, as which time, after rads are complete (or when I decide I don't want rads) they'll start the refilling process again. But.... My understanding is that if I do rads, my PS would be waiting 4-6 months from rads to allow for skin healing to do the exchange.

TexasRose2127

momof3boys-  Yes I have talked to my RO & PS about the TE exchange timing.  My TE's have been totally filled since my 1st chemo treatment Nov 15th.  There is not one right protocol for the timing of the TE exchange.  If I opted to wait until after rads, my PS would wait about 1 year after rads before the exchange.  I had the option of doing it either before or after the rads.  I am sure the your PS & RO gave you the best treatment plan for your BC situation.  Did not intend to cause confusion  

Hugs,

Rose