Spring 2014 Rads

Girlstrong

Tonilee:  battline breast cancer is a long process.  I never knew how long until now.  Take a peek at my dx and treatment timelines, i am so tired too.  I am in radiation now and all is going as planned.  When its over I will feel so accomplished.  I will still have treatment to do, but nothing like going throug chemo etc.  Like you I often feel I look just awful.  Luckily, I am not 3 months PFC and my eyebrows have come back, my eyelashes are in but short, I have hair that coveres my entire head but it is really really short, my fingernails are starting to grow out so I can cut off the dead looking parts and the ridges are growing out too....What our bodies have been through is just amazing.  Please know that this will get better.  Take a deep breath, keep going, you will get there too..we all will.  Big hugs to you my fellow Michigander!!

keepthefaith

tonilee, hang in there! We all have those bad times. I am 5 wks PFC and I think I finally felt the black cloud lifting a few days ago. There were days that I didn't even get out of my pj's! I think it's just part of the process of getting through it and coming out victorious on the other side! That's too bad that your RO questioned your treatment. That would stress me out, too. Take one day at a time. You'll get there. If you feel you are depressed, maybe your MO can help. Mine offered an anti-depressant, but I declined.

Rant, vent, cry, do whatever it takes to get through it!

 

 

StillRunningNLM

Tonilee - this board is hear for us to voice the things that we may not want to say to our loved ones.  I just finished 23/33 rads treatments.  I am only 40.  My cancer was not detected by mammo or utlra sound, but incidentally when they did a surgical biopsy to remove 2 fibro-adinomas.  I am very scared that it will return and not be detected, but I have not spoken about it with my family.  I feel like I need to be brave and strong for them.  My family has already lived through my aunt surviving breast cancer and my brother surviving non Hodgkins lymphoma.  I don't want to make them worry anymore than the already are.  This site is very comforting to me for many reasons, but mostly because I don't feel alone in my fears.  I have also started seeing a therapist for talk therapy at the suggestion of the social worker in my ROs office.  It is nice to be able to voice my fears to a real person without worrying that I am burdening them.  Strangely, I feel a physical relief as well as an emotional relief after the sessions.  There are also support groups sponsored by my cancer center, but I have been too busy to pop in and see how they make me feel.  Hang in there!  It does get better.  Feel free to vent, whine, complain or do whatever you need to her.  You are among friends

StillRunningNLM

For Tonilee - I hope it makes you smile

StillRunningNLM

I have completed 23/33 treatments.  I have felt pretty good despite swelling and sensitivity until this week.  I have developed tendinitis in my shoulder on the side that they are treating (right).  The doctor is confident that it is not caused by the treatment, but by the position during treatment.  Still, it is very uncomfortable all the time and my thumb started to go numb during this morning's treatment.  7 more in this position and I am tying to be strong.  But, the numbness is pretty scary on top of the fact that I know I am being zapped.  I am also concerned that the position for my 3 boost treatments is really going to hurt.  It was already uncomfortable when they did the trial run and my shoulder wasn't nearly as sore.  Hopefully I can grit my teeth and get through it.  I am determined that I will be the one kicking ass, not the BC!

Anonymous

Tonilee, We've all earned the right to whine a little. It feels so much better when you get it out. All the women here can understand and it makes all the difference. So, whine away and then get tough and know that you can get through it! We find strength that we never knew we had.

Anneb1149

Hi everyone

It has been 3 weeks since I had my ct and markings. I called them yesterday and they said they are still working on it. I asked if I was paticularly complicated and she said yes. When I asked if I should be worried, she said absolutely not- it is just a sign that my RO is very thorough and won't start till she is absolutely sure she's got everything exactly right. I don't know what to think. I'm also frustrated because I have just been sitting here near Atlanta waiting for their call. I have a nine month old granddaughter near Charlotte,NC that I could have visited, and I have 3 kids and 3 grandchildren in Ft Lauderdale, and that's where my house of 34 years is. I could have gone home for a couple of weeks. I went home for a week in Jan, but it was just after my last chemo and let's just say I wasn't the grandma the kids are used to. No sleepovers, and when they came to visit Mom had to come too because I was too weak to even get them something to drink. I feel so much better now, I can't wait to see them, but here I sit, waiting for a call from the ROs office, then I will have 33 treatments before I can travel.

QuirkyGirl

pulling for you Tonilee!  Love the robe plan, Pam!

Had my 2nd rad today and felt less claustrophobic this time.  That's never been an issue for me, I suspect it's because I'm face down and it just feels freaky.  Picked up calendula lotion.  The Aquaphor is too wet for my taste.  Hope everyone is enjoying the first day of Spring!!!

Girlstrong

Im feeling frustrated....my rads has been cancelled two times this week due to machine breaking??????  Has this happened to anyone else?  I am talking to my RO tomorrow.....

flagirl

To all, Reading all of your stories inspires me.  We have taught each other to be brave and courageous through this BC fight.  Thanks for the well wishes, and I wish all of my fellow BC sisters success in their recoveries as well.  It sounds like most of us are in the final round of the treatment process and soon we can put this mostly behind us (at least the worst part).  Let's all kick BC's butt, I can deal with a little fatigue if it means recovery and I can get back to a normal life.  I can see the light at the end of the tunnel.  Let's all be gracious for where we have come from just six months ago. I know for myself, I thank God I didn't have to have chemo.  I see what most you have come from in your journey and I have so much respect and admiration for you and your strength.  Now, onward we must go.  Soon we will look back at this time  and it will seem like a bump in the road.   Better days, and years are coming. We have many more things to accomplish in our life and good times to be had by all. ~~ Hugs~~

Anneb1149

Amen to Flagirl!

beenheresince1957

Hello! So glad I ran across this blog site!

I am four weeks out from my initial surgery and I feel almost guilty for how well I am doing. I had a double mastectomy with (Tandem) reconstruction, implants perm in place. My issue now is concern over radiation treatments and the integrity of the right side (cancer/node) implant. My oncotype DX came back 0, so no Chemo. Barely one node involved, 0.8274cm. Other two removed were fine.

I get that I will need oral meds but with such a small involvement cancer cell wise, would the future damage to me and the risk of further surgeries when I am doing so well make any sense?  I am 57 years old and otherwise healthy as a horse! Scheduled to begin radiation in 2 weeks and just not sure about it. My supposed rate of return right now is 10% over 10 years.

Trying to get an idea of physical cost/benefit of going through with this. Going back to work in 10 days.

What do the wise and more experienced of you ladies think??

PS....just for reference...my Mom had this same cancer almost exactly, except she was 60, did NOT have Chemo or radiation, took Tamoxifen 6 years and has been cancer free 19 years and is still here today. That is why I am wondering???

Thanks for any education or advice you can share!

1957

flagirl

I am not an expert by no means, I am told and studies say that Armidex/Anastrozole has a better success rate than some of the others.  Every cancer  is different, so your success may not be the same as your moms.  Radiation treatments for the most part are easy. So, why not do it if it gives you better odds? Your oncologist should be able to give you some statistics for your outcome based on RADs vs no RADs. I did not opt for chemo (I had a test score ONC of 22), because I had a 10% recurrence rate with the Anastrozole.  Chemo would only improve my success rate by 3%, I chose not to do it because I did not want to introduce the chemicals into my system at this time. If I get a recurrence I can opt for chemo then.  The decision is up to you, there is no one good answer.  Good luck with your decision and I hope I offered something of use.  You can only radiate an area once, something to consider. I am 60 and stay pretty active, but age is not a factor. 

beenheresince1957

Thanks so much Flagirl!

Very good point about once I have an area treated with radiation, that's that! Right now they tell me I am clear, so I guess I should consider that as well. Lots of questions and not much time. Arrgghh!

Most of the side effect I hear about have it mimicking menopause for the most part, not something I relish facing as I kind of skimmed through menopause the first time around (prolly how I ended up with this cancer as I still am sporting WAY too much estrogen for somebody that has been through the change for 7 years!), but I have survived worse and may in the future.

Thanks for the info...it was helpful.

1957

flagirl

1957  Hot flashes were almost gone for me too, but it's not that bad.  If I watch my sugar intake, the flashes are not as often or as severe.  My biggest complaint is joint pain, but I have been on it for almost four months now and those symptoms are leveling out as well.  I also started taking D3 per my ONC advise because the hormones can affect bones too. Good luck

inks

Beenheresince1957 - You could ask specifically for reasons why they are recommending radiation to you. I can see one reason from your signature line - 1/3 nodes. They would like to see less than 25% lymph nodes involved from the ones sampled. You could ask if you do a full ALND could you get by with no radiation. Or there might be something else to your diagnosis that makes rads necessary. 

BigDBeatingBigC

Tonilee, you can whine and rant all you like, we understand and we accept and support you.  I did not have chemo, so I can only try and imagine what it must feel like, but like you, with every step I have taken, I have been very scared and emotional.  All any of us can do is take it one day at a time, one procedure at a time, and you will get through this and you will feel better, and the anxiety and fear will ease, I promise you.  Until then, you come in here and share your feelings, good and bad, with us.  We are here for you and for each other.

smrlvr

Tonilee, it is good,to,see you here posting again!  I was worried about you!  I know how you feel about all this, and join you in your weariness.  My PT found some major cording under my left armpit today, and it was just too much for me.  I just don't know how much we are expected to take. So rant all you want, we are here.

Today was treatment #6.  So,far,no side effects.  I use the aquaphor every day, but it makes me feel,so,sticky. RO said aquaphor and 100% aloe only.  I think I am going to walmart to get some white t-shirts to wear under my clothes so they don't get ruined.

LDN48

Just got the call today that Mom's treatment begins tomorrow!  It sorta freaked me out when the nurse said Mom needed to come in for her "port" - she meant port films and I thought someone was talking about putting a port IN.  Whew, no port, no chemo, just the films so then her rads start Monday the 24th for 16 days, supposedly finishing April 14.  She had hoped to be eligible for the proton research study being done here, but the RO said no due to the amount of DCIS she had.  She needs the whole breast radiation, not the partial which is what the proton is.

It'll be good for Mom to have a couple of extra weeks here in town in case there are side effects that show up about the time she finishes.  After that the folks go to rural Oregon for the summer.  

We have learned a lot on this board from reading everyone's posts, thank you for your ranting and sharing and information.  When this stage of treatment is done, I'll take my 65 y/o self to discuss my long years of estrogen use with my own physician......  Mom's been on estrogen (and can stay on it due to her triple negative tumor) but I might not be so lucky.

Blessings to you, one and all.

Dogsneverlie

Hi Tonilee - you do not sound like a whiner at all.  This is the place to open up and let everything out.  Hugs to you, it looks like you have been through so much and you are a beautiful woman, stay strong and positive.

Donna

Dogsneverlie

I had to wait a bit before posting my "fitting and tattoo" session.  Seacoast Cancer is really nice and the people who work there are wonderful.  I am finding that the day before my appointment and the day after I am REALLY emotional, feel so teary and I really hate feeling that way at work.  I was scared, I mean all went well and my simulation is on Friday next week and I start on Monday March 31 for thirty sessions.  I had to have this block thing taped to my chest and take deep breaths - apparently because of the location of my heart to my chest wall, I will need to take a deep breath and hold it for about 30 seconds during the treatment.  Under normal circumstances it's OK but I found as they would say "only ten more seconds" I could barely do it but I'm sure it's because I was in the CT Scan machine..........I also was not expecting to be told they are radiating a larger area because they are dealing with cells so now up to my collar bone will be affected.........

Ahhhhhh.......ladies, I would be lost without you.  My husband is an absolute love and so caring and I want to be honest with him about my fears but don't want to stress him out.  Thank you for being here.

flagirl

Dogsneverlie

Sorry you are feeling anxious I understand as my treatments are on the left side too. I am going for my simulation today and starting rads on mon.  I too am having 33 tx low n slow to protect my heart due to medical history.  Have faith in the med profs they know what they are doing.  Before you know it, this will all be a blip from the past.  Just picture yourself somewhere you would rather be when you are in the chamber.  I love the beach, that's where I go in my mind.  Feel free to vent and express your feelings we are all here for you, and with you on your journey.  ~hugs~ Sometimes saying less is more to your loved ones. Mine is too sensitive to handle it all so I don't express all of my feelings.  We are here for you, use us to express and vent... :-)

flagirl

OK, BC sisters-

Went for my simulation and I did not get a cushion that molded to my body.  I have like eight marks on my breast some are three inches long with a majic marker.  They told me to be careful and not scrub them off? They don't do tattoos? I was expecting small freckle dots... She said not use aquafore yet and when I start using to go in between the lines. She said they will refresh the lines as needed.  What?  I asked diet, vitamins, and drinking a glass of wine.  They said do as you normally do.  I am just wondering if you got the same info as I did. Also, I asked about low dose rads and they said I am getting std doses.  I will see the dr on Tues and ask all these questions again.  I AM using aquafore starting Monday don't care.  I have sensitive skin and don't want to take a chance on rashes or itching of any kind )) Thanks for listening, I look forward to your responses, please.

StillRunningNLM

flagirl - I completed 24/33 treatments this morning.  I also have extremely sensitive skin (I have to use Glide in various places when I run in the hot weather or I get so irritated that I get open sores from the damp fabric rubbing).  I also burn very quickly when I go out into the sun with no sun screen.  I am definitely red, but my skin is holding up.  I am just starting to have a few spots that itch.  My RO nurse gave me a tube of Radiagel by a company called Carrington that I use 2 xs a day in the radiated area, but I can't use it closer than 3 hours before a treatment.  I also have to apply it sparingly, but it has done the trick.  The nurse said on Monday that I could apply the gel a third time a day to spots that seem to be getting more irritated, but that I shouldn't apply more at one time (I hope that makes sense, it did in my head)  I was also told that I could use 1% hydrocortisone cream on itchy spots in between the gel if I needed to.  I was extremely nervous about my sensitive skin too, but they said it has more to do with the amount of tissue that is being radiated than how sensitive your skin is.  My skin is checked once a week by the nurse and once a week by the doctor (different days).  Also, if I mention any concerns to the techs setting me up for the treatments, they mention it to the nurse so she can check on it.  I started to swell by the fourth treatment.  he nurse and doctor said that it was typical, but it also wasn't anything to worry about.  If you have any questions, concerns or issues you should definitely talk to your team.  Hang in there and go kick some a%%!

smrlvr

Flagirl, I had the magic marker day, too.  The next time you will get your tattoos.  I started using the aquaphor before radiation started, and I have been using it every day since starting.  Morning, after treatment and before bed.  I finished #7 today, and no SEs yet.

BigDBeatingBigC

I did not get tatooed, just marks with waterproof pieces of tape over them.  I burn very easily as well and never tan.  But StillRunning is right.  I was told that does not have anything to do with skin reactions from rads.  I was also given RadiaGel and was told to use 1% hydrocortisone if it gets itchy.  I have completed 5 treatments out of 16 whole breast, and will have 5 boosts at the end.  Originally, was told 3 boosts, then they changed the plan on my first day.  I get a bit more radiation in a shorter period of time, but they only do that if you have not had chemo.  I work at a law firm and when we get busy, we are B U S Y.  Today was one of the horribly busy days, many Fridays are.  At the end of today, I was truly worn out, but I am home now and feeling okay.  It was a lot of stress today, so not sure if the tx had anything to do with my tiredness today or not.  Again today I was told I may be okay all the way through (in terms of fatigue), some patients sail through rads and feel fine.  I am still in the "honeymoon" stage as they like to call it.  But I felt fine all week, I drink a lot of water, and I go to bed early each night so I get plenty of rest.  I am eating well and walking a little every day.  I am also seen once per week by the doctor and once per week by his nurse.  I have had no swelling or any skin changes yet.  Will keep you all posted.  Nervousness is normal.  But once the treatments started, a lot of that went away.  I just want to get it over with.  Have a terrific weekend!

flagirl

smrlvr and BigDBeating

Thanks for the support. I guess it's just nervousness you picked up on that. Was short with hubby too. Didn't mean to be- have to be strong for him so I have quiet breakdowns.  They pass pretty quickly and don't happen very often. The markings are just about gone and it's just from wearing clothes.  Should I remark over them?  I don't want to get yelled at when I go in on Monday for my first treatment but would rather be tattoed personally so I don't have to care about it. It's not like anyone else is gonna see my gals other than hubby.

TB90

Flagirl:  You have enough on your plate that you should not have to worry about the markings rubbing off from your clothing.  If anyone is short with you, give it right back at them (not your DH).  It should be their responsibility to ensure that their markings remain or else they need to redo them, no questions asked or attitude.  What do they really expect from you???  Not to wear any clothing?  Really! Those markings are critical to you receiving the exact dosage in the exact correct spot and if anyone should be annoyed that they are disappearing, it should be you. Take care of yourself and ensure that they take good care of you too  

BigDBeatingBigC

flagirl, you are fine here, never ever worry about nervousness or whatever you are feeling.  You are here with people who totally get it.  As for the markings, no one will yell.  In fact, the first markings I received were not the final markings.  When I went for the first tx, I was marked with many more, precise ones.  My techs re-apply the markings as needed as the tx's progress.  I am careful in the shower and when applying my RadiaGel as much as I can, but they have said not ever to worry, if something needs to be re-marked, they will take care of it.

FightBC

I just had my third lumpectomy on the same breast. Hopefully, I have clear margins now.

I am going to have radiation for six weeks.

I have two options.
1. Drop the kids off to school, go to hospital for radiation and then go to work.
2. OR after work, go to hospital for radiation and pick-up kids and come home.

Can you please share your experiences on how you managed the schedule, work, kids and energy level?

Thank you,

BC diagnosed on 1/7/2014. DCIS, stage 0.