MAY 2009 Rads

kt57

Hello May Ladies:   I had a lumpectomy/SNB with rads (done in June).  That breast is more tender now, esp at the incision sites.  That breast feels tighter and looks a bit smaller.  The NP at my breast center advocates daily massage to break up any scar tissue formation.    In my inquiries about reconstructive surgery ( if I ever choose to do prophylactic mastectomies)  I learned that they recommend waiting at least 6 months post-radiation and that tissue transfer procedures (DIEP, GAP, TRAM) are more successful than implants. 

Enjoy the rest of the summer....

jrgolomb

Hello everyone.  I just returned from Pennsylvania, where I had the opportunity to hook up with a bc sister-Margo1 .  It was truly awesome.  We were on the may/june rads tx and made the effort to talk to each other and realized we would be by each other  in PA.  We met, had dinner and I am so glad we made the effort. 

I realize what came out of that is what we texted each other as we said good bye:  We are fighters, we are happy we to have been able to be there for each other and we will meet each other again to provide support.  That is what this is all about: support!

I hope you all have a great day

Debonthelake

It's so great to drop in and hear how well everyone is doing.  My lumpectomy breast is about a half of a cup size smaller than the other breast.  Fortunately for me I was lopsided in the other direction prior to BC.  I'm lopsided but, not enough yet to consider doing anything about it.  I'd have to meet a high deductible again next year before insurance would pick up 100%.  So, I'd have to be pretty unhappy to consider that.  God bless all of you.

PrincessKauai59

Hi Ladies, Just stopping by to say hello.  I'm doing pretty good overall and have had some of the side effects with tamoxifen that are expected. Hot flashes mainly.  I even got leg cramps after saying to someone here that those weren't particularly associated with tamoxifen (gotta love the irony...)

 My DH and son are doing "Daddy Camp" this week and I'm going back to the optimum health institute for a week to get all tuned-up and healthy now that this year of surgery, chemo and radiation is over.  I head down tomorrow.  I want to echo what Debonthelake wrote, "God bless all of you."

oxo C

p.s., I got some free tickets to our local baseball game for bc survivor's night, so will take my family and be one of those ladies on the field in the pink t-shirts at the Oakland A's game on 9/5/09 (if I go through with it

Texas357

You should go through with it Princess K! Be proud when you step on that field!

Tuesday is surgery for me, but I'm not making a big deal out of it. My surgery was pretty easy the last time. I've also decided to go against my PS's recommendation and go with simple implants on both sides instead of an LD flap. If I went with the extensive surgery first, I'd just never know if I would have been one of the few who could have gotten a good result with less. My body's been through enough. I want to take a smaller step first.

aris

Can I ask a question about creams here? I figure you are all experts by now.

 There seem to be so many options for creams to put on your breast before radiation (not immediately before, but starting 2 weeks before) that claim to help with the skin issues. I am at a loss of what to do.   Should I do nothing and wait to see how my skin reacts? Should I spend money and get my girls' radiation cream? Or what? Aloe?

I am starting rads in 2 weeks, so I joined the Sept group, but I thought you all would have some advice to share.

Thanks to you all.

Pam

ajlive

aris:  It is good to moisturize your skin before rad treatment.  Suggest not going out and spending a lot of money on expensive creams suggested  until you start having skin problems.  I started a couple of weeks before treatment using udderly smooth found at Wal-Mart around $4.00 worked great.  Once treatment started I used 100% Aloe Vera.  Fruit of the Earth found at Wal-Mart is the best.  Took a tube of the aloe vera with me so could put some on after each treatment.  Then at night I used the udderly smooth.  Most don't start having problems till the 3rd or 4th week.  You will find many suggestions on the board on what to use but you should do what your rad onc suggest.  You may have no skin issues at all.  I had no problems other than like a bad sunburn.

ajlive

Hello everyone.  Hope all is doing well.  It sure was hard to go back to work today after being off for 3-weeks.  Think I could easily handle retirement.  Six more years...

Got a call from my med onc today.  He wanted me to come in so he could go over my blood work results from testing my Estradiol level.  He said post menopausal level is usually 27.  Mine was 47.  I had a hysterectomy 18 years ago leaving my right ovary.  He said the ovary is still producing so he told me to immediately quit taking Femara that it is doing nothing for me.  He is switching me to Tamoxifen until either the ovary is removed or quits working.

I found out while on vacation that my step mothers sister has ovarian cancer.  She had a hysterectomy 30 years ago leaving an ovary.  Scared me to death....  I talked to the med onc about having the ovary removed.  He suggestion I talk to my gynecologist.  He also said insurance would probably not pay for it.  Yikes.....    Now what?  Another hurdle....

americanpinay

Hi ladies...

Hope everyone is well...

I've been on Tamox for one week and so far so good...couple of hot flashes once in a while...

TEXAS...good luck with your surgery...I wish you a fast recovery...

PRINCESS...go for it...I'm sure it'll be fun...

ARIS...no special moisturizer for me before treatment but I used a lot of aloe vera during TX...also, hydrocortisone and silvadene as prescribed by rad onco...

AJLIVE...good luck with your onc visit...

JRGOLOMB...nice to have met up with another survivor...

Take care ladies...

Bold

Hello all just wanted to let you know I was thinking about you.

Aris, I only used aloe and aquafor. I no problems at all with burning. It has allot to do with the size of your breast and if there is skin touching skin. I wish you all the luck in the world.

Anonymous

Hi all - just wanted to report that I had my secondary follow up with the rad onc today and he is pleased that most of the swelling in the breast and lymphatic area is gone, and told me I would probably have cartilage tenderness for a while - but it is healing.  That's good news.  He did tell me I can't work out with weights or do pushups for a while - because of the cartilage thing, but said I can do any other exercises I want.  1st mammogram will be sometime in December and I'm already wincing.

PrincessKauai59

Hi all, thanks for the encouragement.  I'll go for it!

Chevlev, Glad your swelling is down.

I'm at a raw food "cleanse" place which includes a three day juice fast, all organic.  I've lost about four pounds between Sunday night and today, Wednesday, and my "lymphedema" arm is not at all swollen.  Eating cleanly really helps, me.  It feels great.  Well, OK, I'm hungry and had that coffee withdrawal headache for a few days, but it's gone now and this feels very good for me.  Cheers!

Cruise4life

Helloooooo May Radettes....

I was hoping to pop in more frequently...I am now taking care of my 7 1/2 year old granddaughter so to say the least I have been extremely busy...which is a good thing.

I saw my primary onco doc on Wednesday and we discovered that my cholesterol is high so now I am on statin pills...and then he called me yesterday to tell me about a new cancer treatment and is putting me on Zometa.  Apparently Zometa is to keep the cancer away and also to help with stengthen bones.  I will go in for an infusion for 1/2 hour every 6 months or so...Thought I would be done with just taking Femara...but NOPE...gotta get more stuff in me to keep this BC from returning....

I will try to catch up with everyone when I get a break...somewhere down the road...

Hope everyone is doing well...sending you all HUGS...and Love....

Cindy

ajlive

Hi Cindy,  Good to hear from you.  Glad the onc put you on Zometa.  Femara is really hard on the bones and can cause osteoporosis.  The put me on the once a week Actonel.  Make sure you take extra Calcium and D3. 

My med onc took me off Femara due to the results from the Estradiol score being high.  The one ovary that they left in after my hysterectomy 18 years ago is still producing estrogen so he said Femara would not work and wants to go on Tamoxifen now.  I told him I had read that there is a list of medications that can make Tamoxifen ineffective and one of my medications is on that list so for now delaying being put on Tamoxifen.  I'm in the process of discussing with my gynecologist to get the ovary removed since I am now at high risk of getting ovarian cancer.  If I can get it removed then he will probably put me back on Femara.

Had my 6-week checkup to day with rad onc np.  Discussed the sensitivity I am still having in radiated breast and that she was surprised how much my radiated breast shrunk.  She felt a lump at 10:00 that she was concerned about that she didn't think was scar tissue.  My cancer was at 9:00.  Since I have a checkup appt. on Monday with my surgeon she said to have him check it and that he may want a sonogram done just to see whats going on.  Now what?  Something to worry about over the weekend.  Hopefully it will be nothing.

Hope all is doing well....  Have a good weekend.

Texas357

Ajlive: keep us posted, okay?

I just got the path report from my prophylactic mastectomy, and they found multifocal atypical lobular hyperplasia. My BS was thrilled that I'd asked for the surgery because he felt that, since I'd had lobular cancer, this would have been a big risk for me.

Anonymous

Ajlive - I too am starting on tamox, actually in really low doses at first to see how I do.  Please keep us posted as to your lump!!!  Hopefully it is just scar tissue.  Try not to worry so much, but that's part of our new territory, isn't it???  ((((Hugs)))) to you.

Texas, my god, that was a good call on your part!!  Oh, I am so relieved for you!!!  High-five!!!

I switched to a new medical onc and I'm going to ask her at my October follow up if she feels I would be a good candidate for prophylatic bilats, just in case, because I'd better get it done if it's what would be recommended, before the end of the year and my deductibles and all.  Especially since when I had the initial MRI, they found what looked suspicious in the left breast, had a biopsy right before the lumpectomy but it was B9.  but, if things are going to be funky looking, I just may opt to get rid of the culprits first.

Bold

Yikees!!! ajlive, I pray that it is nothing!!!! Keep very busy and calm. I am sure everything will be ok!!!! Your pathology is grade 1 that means a very slow non aggressive cancer. It did not grow that big in that short of time. Thats my story and I am sticking to it!!!!!

Chelev do not be too hasty. I am looking forward to what your new onc suggests. You are bracc neg right? I am seeing my onc for the first time in like 3 months. I have a boat load of questions for her. I think this might be the last time I see her as I might switch also.

Tex it looks like you made the right decision huh. I hope you are feeling well.

The journey continues.....................

Anonymous

bold, yes, I am going to wait until I see her and we are doing the genetic testing as well, as my new onc feels it is important, even with absolutely no known history in our family besides me.  but, if it is positive, or if she feels it would be best since I am known to have had lots of micro-calcs, then with her expertise guiding me, I will make the right decision.  I completely trust her decisions.

Texas357

I have my oncologist appointment this Thursday. What questions are y'all asking? I'm of course going to ask if I should be concerned that so much "activity" popped up on my other breast that wasn't there last year. I'm also concerned that I'm NOT getting hot flashes with Femara because that's supposedly the most telltale sign that it's working.

I saw a study that said women who don't get hot flashes on Aromatase Inhibitors would benefit from eating 10 servings of fruits and vegetables a day. Lord knows I try but that's a LOTof food!

Anonymous

Texas - I did not get hot flashes from Femara, though I got every other darned se!!  I have taken only 1 whole tablet equiv. of tamox, and the flashes are already flaring up - which is not a big deal for me since I've been flashing since 1997.  Wait, that didn't sound right, did it?

I would definitely ask about all of the "activity" and what they feel might be the best course of action for you.  Another question I'm asking my new onc is about hormone levels testing, just to see where I am, tumor markers - how does she feel about that and what does it really mean, etc.  I'm sure our other rads sisters have questions for you too - Meg, where are you?

ajlive

Chelev & Texas:  Thought I would put my two cents in on questions to ask the med onc.  If you estrogen positive and on an inhibitor ask for a Estradiol test that is how my med onc found out my ovary that was left after my hysterectomy 18 years ago is still working.  Since it is still working the inhibitors will not work.  Then the med onc wanted me to go on Tamoxifen.  I read up on Tamoxifen and found there is a list of medications that will make Tamoxifen ineffective and of course two of my medications is on the list.  I also read before you are put on Tamoxifen you need to have a CYP2D6 test run to see if you are a metabolizes.  If not Tamoxifen will not work for you.  I called my med onc about this Friday and he said he didn't know about the test and would have to call me back.  Two hours later he called and wants me to come in Monday for a blood test.  The more I deal with this med onc the more I do not like him.  I think I am going to change med onc's.  He is either playing stupid or he is not up on the latest info. and he is a young doctor. 

Texas357

My medical oncologist does not believe in testing hormone levels. Luckily,my gynecologist does so he is doing it for me. You really do need to be your own advocate!

I visit the vampire tomorrow for tumor marker tests, and will get those results on Thursday.

I'm also frustrated that my oncologist didn't want to test my cholesterol, even though Femara may artificially raise it. If I get it tested in the future, I'd like to know if it was already high or if the Femara played a role in raising it. Anyway, I'm going to pay for that test myself.

americanpinay

Hi ladies...

Just want to check in...hope you are all doing well...

I am happy to report that I've been on Tamox for two weeks and so far no SEs except for minor aches and pains (that may or may not be due to Tamox) and hot flashes once or twice a day...

TEXAS...I get my cholesterol tests done by my primary care physician...

I see a lot of you are switching oncs...I am soooo thankful that I like and trust my onc because I don't think I have a lot of the flexibility that you have, if I ever need to switch oncs, I have to pick one within the "network"...

Take care everyone...

ajlive

Hello everyone.  Hope all living in the Los Angeles area are in no harm from the fires. 

Had my 4-month checkup with surgeon today.  He says lump is scar tissue and keep exercising.  Says breast will be sensitive off and on for a while and switching meds will probably not help either.  Forgot how I hated his mr. macho personality.  Thank god I don't have to see him very often.  Next appointment is mammo mid Sept.  Praying for all clear... 

barbiedahl

Hi everyone,

 ajlive so glad to hear that everything is fine, gees.

The leg cramps from tamox seem to be better. I make sure that I have a banana a day and I have upped my calcium and vit D. So far so good. 

I was hiking for a few days and noticed that the pack was causing swelling in my bc breast. I only noticed because my bra left marks! oh boy, taking it easier this week. Also the skin was itchy so I'm creaming again. 

I hope everyone is feeling well and enjoying the last days of summer!

Texas357

Ajlive: Great news! What a relief!

Barbiedahl: careful girl.

My mammo results came back (a week after the surgery, but oh well): it also showed the ALH. Gonna ask my oncologist on Thursday if I should be concerned about this showing up so quickly. It wasn't there last year. But the pap smear was clear, so I'm happy about that!

Anonymous

Ajlive - Yeah!!!!!!

Barbie - I overdid early on too and boy oh boy, did I hurt too.  Trying different ways to work out that don't aggravate the booby and lymph node area.

Texas - please keep us posted!!  Glad the pap was good - that's one area you don't have to worry about!

Cruise4life

Hi Ladies...Hi barbie and chelev....

Just got back from the onco doc's AGAIN....went in as I have heart pounding symptoms with the statin he put me on for high LDL cholesterol......he tested me for my thyroid..seems that something is not right and I have loose bowels too.  SH&% what else???  Take this for that and take this to help that ....always something.  Geeze...

I am going in next Thursday for my Zometa infusion...will be doing that every 6 months for two years. 

Still very busy with raising my granddaughter....she is so special.

Also became a board member for the Solano Midnight Sun Foundation...we are having a Gala dinner on September 26th...I am in charge of table decorations...I ordered white orchids which will be placed in TOP Hats and placed on a square mirror with a battery pillar candle....(Hollywood Theme)  The dinner is $150.00 per person and the money we raise goes to our foundation which helps women who cannot afford BC treatment or mammograms.  Becoming involved with this has helped me 'Pay it Forward"....and it really feels good. 

www.solanomidnightsun.org

Here is the website above.....

Hope everyone is doing well...but I see some of you have had some hiccups....we need to get healthy and stay healthy Radettes.....

Sending HUGS and Love you way......

Cindy

Anonymous

Hi, Cindy - good to hear from you!!  Hope you get the heart and lower end resolved - geez, what a combination!!  BC is the gift that just keeps on giving.

I am part of a non-profit group too - called Pink Tie Friends (www.pinktiefriends.org) and we also raise money to help women who are underinsured and uninsured get breast cancer treatment.  Last year they were able to treat 70 women!  I couldn't wait to feel well enough to join.  We're having our annual Gala in early October and do lots of fundraisers all year.  Isn't it great to be able to help other women?

Glad you are having a great time with your grandaughter - I know there are lots of struggles there with her mother.  Feel better soon and keep in touch!!!

PS - you are not near the fires, right?

barbiedahl

Hi Cruise sorry to hear about the new medical issues, although I have an idea they all might be related. I have done a lot of reading about the immune system and cancer. There is information showing a correlation between a weakened immune system and cancer. Five years ago I was diagnosed with thyroid problems (inactive) and about the same time I was also diagnosed with Celiac disease ( gluten allergy) When I found the breast lump I asked my onc when it had started and using math, which he is very good at I might add, he said it started about five years ago! The same time I was having thyroid and Celiac problems-both autoimmune diseases! I am sure that for me it's all related. I am working hard to support my immune system in hopes it will protect my body from additional cancer.

I am so happy that you are enjoying your granddaughter, she is blessed to have you!

I'm so proud of both of you Cruise and Chelev for taking the initiative and helping other women, we are all in this together aren't we???

My breast is really itchy! Anyone else having this symptom? I've taken to putting my rad cream on again. I'm not worried, but I do think it's weird. I guess it's probably just the breast tissue doing it's thing after radiation???

Happy healthy days to everyone!