MARCH 2010 Rads Group

Irishmom

So happy for all of us that are done and doing well.  Good luck to those that are finishing this week too.  Hope everyone has a wonderful weekend and for the mom's out there Happy Mother's Day.  Wondering if most are taking the tamoxifen in the am or pm???  Let us know which is serving you better.  Thanks Kathy

Raili

My oncologist told me I don't need to start taking Tamoxifen until a month after radiation ended.  I'm not even meeting with her again until Jun. 4.  Is that weird??

Sugar77

Raili - when was the last time you saw her? I think that timing is pretty normal. I haven't seen my medical oncologist since last day of chemo on Feb. 8th and my next appt. is booked for July 2nd. However, I'm triple negative so I won't be taking Tamoxifen or anything.

MariannaLaFrance

Happy Mothers Day to all the mothers on this board!

So glad for those who've completed their radiation. What a glorious thing that is....

Raili- As for meeting your onc at later date, I have noticed the same thing with my oncologist / bs. In face, very oddly, I will meet up with my BS on May 25th, and don't even have an appointment with my onc until July.

I told her I probably wouldn't do Tamox, and she wanted me back in 4 months to see if I had changed my mind.  This whole process has seemed very, very disjointed to me. I feel like the docs would have met with me more often to discuss my case, but not so.

Hope all of you enjoy your weekend, lovely days, with no RADS!

joanneasiata

HAPPY MOTHERS DAY

Congrads to all who have finished oh yes what a feeling today was my first day of  NOT going to rads and i didnt give it another thought  Im feelling soo sore under my arm and ive noticed small blisters on my nipple ,under my boob ,and my s/n scar is to sore to even lift up my arm it looks like there is another scar under it hope it isnt like a tear 

. im seeing my onco on friday and my rads onco in 3 weeks after that i dont care if i never see them again lol

JOJO

3monstmama

I am NOT back from Zaps.

I am eatting some Theo Organic Fair Trade 70% dark Chocolate. . .

Anyone else?

It was a great weekend.  I cooked like a fiend and woke up early and had fun.  Today I am blistery and sore but OTC painkillers are dealing with that well enough.

Oh by the way, I have not been able to find some people on Facebook.  I suspect we all have our privacy settings too strict [at least I know I did].   Mine has been visible to friends only.  So maybe for the next week, I will be "findable" on Facebook and yank the setting that keeps people from finding me.  If you want me, PM me!

Have a great day!

Mommaof2

It was so great to not have to rush this morning to get to my rads appt!  I really enjoyed my coffee this morning, the first time in quite awhile!

I too am blistered/peeling and really sore.  From previous posts I gather that is pretty much the norm after a week of boosts.  I sure hope it heals quickly.  I'm really anxious to get back to my gym...didn't know a SE of rads was gaining weight!    My extra pounds can't possibly be from too much ice cream, can it?  Oh well, time to give up the sweets for now and get back in shape for the summer.

Liz.

beceen

Did anybody not have fatigue or get tired with 33 rad treatments?  I never had that side effect yet and I only have 24 down 9 to go, have been working six 12 hours days and sleeping 7-8 hrs a night.  Only my eyes burned on 3 days I think because I was tired.

   Also, I've decided not to take Tamox. I asked what her thought was on the subject for me and she said if she thought I should take it she would tell me and it was really just a decision for me, neither for nor against and I don't see the benefits outweighing the risks in my case.  Over a five year period, 3/100 will have breast cancer recur either in the same breast or in the other breast each year for each of those five years(actually it's just a little less than that) of those that have what I had and that is without the Tamoxifen.  If I take Tamoxifen, it reduces it to 2/100 for each year for five years.  

 I have a couple weeks left, but have found all your comments very helpful and supportive through the process.  Thanks to all of you and I wish you the best.

MariannaLaFrance

Beceen,

You and I have a similar diagnosis. My oncologist advocated for Tamoxifen, but wasn't terribly surprised that I opted out of taking it. I also did not get very fatigued from radiation. I got hit a few days right in the middle of treatment, and I slept more soundly at night than I have in years. I think because I slept so well that it helped mitigate the fatigue during the day!

I am 1.5 weeks out from rads, and I feel fine. I still worry about recurrance, and I now have to get checked out via colonscopy due to IBS-like issues I've been having. My Vit D levels were low, so on supplements, and they make me feel like Wonder Woman. So much energy from the increased Vit D.

Congrats to you for finishing and for being able to make a choice to not take Tamoxifen. It was difficult, but I felt like it was the right choice for me.

irish47

Hi all,

After much soul searching and three (yes three!!) diff med oncs opinion, I decided to do the tamox.  I was told to wait till two weeks after treatment so that is next Wednesday in my case.  Will also be taking magnesium, calcium, selenium, fish oils and a low dose of effexor. The third onc was American btw - Jennifer Windthrop - and she was wonderful! It was her who prescribed the supplements and it was the best money I ever spent in going to see her.

Am also embarking on a radical change of diet and an exercise class, and have joined a support group for breast cancer survivors.  And I hope to survive till at least 80! 

June2268

And you will make it you 80 Irish47and or beyond......so glad you are so happy that means alot with all the BS of this we have to deal with.  I wonder why so many people are told to wait and I started the eve of my last rad appointment......hmmmmm!

perfect4

I have been lingering for a while, but find so much useful info. in all of the posts. I also am finally done with rads..I was taken off a week early(so I didn't get the boosts) because my skin was "done" as my doctor said.(I have TE's in and I guess they would have had issues if I kept going) I have a follow up on July 2nd. Anyone know how often we need to get scans? Congrats to everyone who is done....I never thought I'd get to this point....it seems sureal! ---Is it weird that I am kinda lost today since it is the first day in along time I don't have to be at a doctor's office?? What to do.....

3monstmama

perfect4your surgeon should tell you when you get scans.  I was told the first one was at 6months and that I would get them every 6 months for a couple of years at least.  But before I get to the scans, I have a follow-up appointment with the ZapDoctor one month after Zaps are done and the appointment with the oncologist.

Otherwise, today in the shower it became clear that I am actually pretty darned crispy on the nipple area.  I stayed in the water long enough for the dead peeling skin to turn white and that was kind of sad looking and much more extensive than I had realized.  Also, I am finding that my nipple is way more sensitive than it was and it might get me going home early just because when the OTC drugs wear off, I feel positively queasy if my clothing hits my nipple the "wrong way."  Unfortunately, what constitutes the "wrong way" keeps changing which makes it hard to concentrate on work etc.   My husband says it feels so bad because its a burn and the nerves on the raw area are exposed and being abraided.   Both he and my MIL are encouraging me to just go home [husband even said he would come and get me from work and he NEVER does that!] and rest but I feel like such a wimp.  I mean, its not like I'm missing a limb or in constant pain. . .

On the bright side, at my knitting support group I was told by another person who did rads and chemo that the worst will be over about 2 weeks after rads.  So at worst, only 11 days to go, right? 

3monstmama

By the way, anyone else signing up for the Cancer Survivor Registry that is discussed on the home page? 

cabmom

Congrats to all who have finished......YEAH!    For all those still going....the finish line is CLOSE. 

Raili

So I've been thinking.  At what point along this journey can you say you're "cancer-free"??  Am I "cancer-free" because I've finished radiation?  Who's to say I wasn't "cancer-free" right after surgery, and the radiation was just preventative?  Or maybe I was cancer-free after, say, the 8th or 27th radiation treatment.  Who really knows??  Do you have to have some doctor pronounce you "cancer-free," or can you just assume that you are?!  Can I now say that I'm "done with active treatment," or does taking Tamoxifen daily for 5 years count as "active treatment"??  I'm so confused by it all.  Finishing radiation was HUGE and I'm glad to be done with it, but I must admit that I don't feel this magic, clear, definite transition from "cancer patient" to "cancer survivor."  I still have all the doctor appointments in my calendar... I'm seeing my naturopath next week, then my oncologist the first week of June for the Tamox, then I have a check-up with the rad onc a couple weeks later, and another thermogram somewhere around that time, and a check-up with my BS in Sept with more imaging tests (I'm assuming), and probably at least one more onc visit before then... sooo... I don't know.  I don't feel like "YAY, IT'S OVER!!"  But IS it?  Am I just having some kind of delayed reaction?

3monstmama

Raili

I was thinking the same thing---how do I describe myself?  I like to call myself a survivor but its NOT over.  I still have tamoxifen, I still have appointments, I still have being worried.  And just when I feel like next year at this time, THEN I can feel fine, someone will post about a reoccurance 10 years out. . . .

I'm glad I'm done with radiation but I don't forsee myself ditching this board or the friends I have made here because its not done yet. . . and I think the only people who can get that are the ones still in the race. . . .

obviously tonight will require red wine with the dark chocolate!

beceen

I asked about when is a cancer in remission versus not having cancer, like skin cancer.  My rad/Onc said they are different.  We will only be in remission as it can come back at any time.  It's weird because I don't know, I just thought once I had the biopsy which removed all the cancer (miniscule) and then later when they did the margins and they were clear, I no longer had cancer..but I guess it's because microscopic cells might still linger, we are in remission.  I have 7 more rad treatments and I cannot wait for the end!

YramAL

I was told that cancer is never considered "cured" but in remission-maybe for a very, very long time or even forever.

I have considered myself cancer free from the date of my surgery(12/16/2009) and I also consider that my taking Tamoxifen everyday is my way of actively treating my cancer. I don't like to call myself a survivor-I did what I had to do, most of us do, and there are so many women who weren't as fortunate as I have been. I feel like I got off pretty easy so far as cancer goes(knock on wood!).

Mary 

June2268

Raili I have often wondered the same thing and have talked to my girlfriend who is going through Vulva cancer and every 3-6 months she gets checked and when she gets the clear from her onc, she says that she is in remission.  I guess that is how we have to look at this now.....one will ever know but I am thankful mine was caught early and I just hope and pray that when I have to go for the annual or bi-annual mammo I wont freak out or have an anxiety attack.......I also agree with 3montsmama that I am also thankful for the wonderful people I have met here and I know I will always visit this site as I received lots of useful information and if I can help someone else I will in a heartbeat........

The thing I like most is reading a post that I would have written myself......its nice to know alot of people feel the same way.

Sugar77

perfect4 - here in Ontario, I will get only one mammogram a year. I don't believe they do scans unless a person has symptoms.  Although that may be different for other stages.  I'm not sure but your surgeon will know.  I noticed you are triple negative like me.  You might want to check out a new thread that was set up called "Calling all TNS"...I think you might like connecting with others on this site with a similar diagnosis.  You'll see what scans and follow ups others are getting. Here's a link to the thread:

http://community.breastcancer.org/forum/72/topic/752075?page=1

I'm glad to hear all of you lovely ladies are doing well.  I also like to check this thread and keep in touch with all of you.

Sherri 

MariannaLaFrance

Ladies,

I have wondered about this too. Apparently the "Survivor" statistics that you see basically encompass anyone who has passed 5 years with no recurrance. So, living 5 years without a recurrance is supposed to be "cancer free", according to my breast surgeon. She told me I could call myself a survivor after the radiation was over, but like the others have stated, I am hesitant to call myself that. For now, I am telling people that I have an excellent prognosis, that I am feeling good, and that treatment is over. That seems to suffice in most instances, and it's the truth.

That's not to say I don't have worries about my health, but for now, I feel like I can focus on living more than I could for the previous 5 months. I am enjoying every precious moment now, more than I ever did before.

Mommaof2

beceen - You're almost there - hang in there!  I didn't have any problem with fatigue until my last week and then it hit me pretty hard.  I have to say that it seems like the fatigue went away pretty quick and I feel almost back to normal energy wise. 

I went in for my bone scan yesterday and the tech was so nice - she said although shes not supposes to comment on results, she said my scan looked completely normal and I don't have anything to worry about.  I'm still waiting to hear from my onc for the official results, but it sure made me feel a lot better to hear some good news.

I hope everyone is feeling well - I'm trying to be patient waiting for my skin to heal. I'm still really sore and raw, but since it's only been a few days free from rads, I guess that's to be expected. 

Have a great day everyone!

TreadSoftly

Hi Ladies, I visited my onc today, all well.  He told me to moisurise the radiated boob twice daily indefinitely as the tissue under the skin can get hard and fibrosed......  I had become lazy with the moisturising now that Rads was over, but Im back to the 100% natural aloe vera gel! 

Im getting an ultrasound every 6 months apparently.....  He mentioned 'ovarian suppression' along with the tamoxifen as a treatment option (i.e where they give me an injection to shut down my ovaries for the next few years) but Im really not keen for this at present.....the tamoxifen alone will do just fine!  When I had the 'chemo-pause' for a few months, I experienced dreadful hot flashes and mood swings.  I really dont want them for the next 3 years!!

Hope everyone is doing well

Sugar77

TreadSoftly - wow...good to know about continuing to moisturize the radiated boob. Ironically, today was the first day when I decided not to bother because it was feeling pretty good.  Tonight I'll be slathering it on again.

Sherri 

joanneasiata

HI ALL

I think it is important to still moisturize for about 2 weeks after last rads , i also was questioning  "so what am i called now " issue am i in remission or a survivor or cancer free ? i seen my onco today and bought this up, he told me im cancer free he explained it like this , the operation removed the tumor , the chemo and rads killed o,f if any floating cells in the body, and cause it wasn't in any of my lymph nodes im then cancer free but if it was in any lymphs ill be in remission

 SO IM GOING  WITH CANCER FREE

Raili

Congrats on officially being cancer-free, JoJo!!   I'll ask my onc what I am next time I see her...maybe the same as you, since I'm done with rads and my nodes were clear.

June2268

Hi all I was too told to moisturize 2 times a day just like I was still be radiated....so I will do that for as long as I can remember.....

I am soooooo bad as I was told not to shave for 2 months and today I did it because I couldn't stand it anymore.........I was so careful as not to go near the tan area that was radiated, however I am only out 2 weeks out as of yesterday.  Was anyone else told to wait this long to shave?  My skin is looking better however my area under the pit started peeling and around my areola and it seems to have all stopped so I hope I don't look this SPOTTY way forever, especially the nipple/areola area.....it looks so strange, but other than that I never thought I would heal this good.

Jo Jo congrats on being CANCER FREE.......YAY!!!!!!

I am having my usual wine on this Friday evening and it cant come soon enough!  Have a good weekend!

schipmom

I wasn't told not to shave after treatment was over, so I started shaving about 2 days later.  So far, no problems, but I wasn't real irritated under my arm anyway.  They did tell me to continue moisurizing for at least 2 weeks after treaments ended, so I have been doing it 2 to 3 times a day.  I am 2 weeks out of rads as of today and have finished peeling.  The skin just looks tanned, so all in all, I seem to have healed well.  I have my follow-up with the rad onc on Tuesday and we'll see what she says. 

And I am going to start the Tamoxifen this Sunday, May 16th.  It will be the 3-month anniversary of my biopsy/lumpectomy, so I think that's a good day.  I can't put it off any longer.  Hot flashes, here I come!!

Hope everyone is having a good day

3monstmama

I was told to keep up the calendula creme 3x a day for the next month.  And to use the Aquafor if I thought I needed it. 

today is one week done.  In the morning, other than being pretty peely like after a sunburn at the beach, I am mostly a normal color for me, just a bit darker.  What I am really noticing/realizing is how swollen badboobie was during Zaps.  Somehow I didn't really see it during treatment but now it is definitely much less swollen and much softer.  In the shower, I can see that there is lots of peeling---under the arm and all over badboobie.  The blister that bled is all healed up and just looks like a healed burn.  After I have been up a while, things change.  I can definitely tell where the boost hit---that area turns red after a few hours.  The nipple area has more severe burning with disgusting oozy stuff all around it.  There is a definite scab and if the scab comes off, it hurts like hell.  It is also peeling in thicker bits. I am popping the ibupropene first thing each  morning so while its sore in the morning, I can't really say how sore it is but as the ibupropene wears off, it is definitely irritated by the t-shirt.

That said, it is definitely getting better and better day by day.  And the scar from the lumpectomy is barely visible.

I have slacked off on my exercise this week which annoys the heck out of me.  Next week, I am planning to give up my rides to work and start myself taking my bike to the train and then to work. . . .As I've never done it before---I'm a "born again" bicyclist thanks to my stupidbreastcancer---its a big thing for me.  I just hope I don't kill myself or run over some poor pedestrian!

june2268--- are we only supposed to have wine on Fridays?  Whopps!  And here I am thinking I'm supposed to be having wine EVERY day with dinner. . . .last night we declared it summer and moved from the reds to the vino verde. . . . mmmmmmmmm.