Dis Breast Cancer Survivors - GAGWTA!

[SillyMe]

Hi ladies. I was sent over here by Dan and Laurajean. My mom was just diagnosed with breast cancer 2 days ago. She's having her lumpectomy next Thursday. He told her that she will need radiation treatments. He's not sure about chemo until he gets all the results back after her surgery. They don't know yet how advanced it is.

I hope you don't mind me asking, but what exactly are the radiation treatments? How are they done? What can she/we expect? I'd really appreciate any info you can give me.

 

[Pea-n-Me]

Welsome, SillyMe. So sorry about your Mom.

Several times here on this thread radiation's been discussed. I think we had the latest discussion probably about 10 pages back or so, but definitely just this past month.

Radiation is done after surgery to kill any microscopic cancer cells remaining after the tumor is removed, so as to really get rid of all of it not only in the breast but sometimes under the arm (axilla) and up by the clavicle. You go daily to the radiation center, check in, get your radiation and leave, the whole thing taking a half an hour or so. The longest appointment is the one in which they set everything up which is done under CT scan (I was in the scanner lying perfectly still for over an hour). They also place some very tiny permanent marks on your skin in several places as markers for the radiation beams which need to be very precise each time. As a general rule they try to only do radiation once to the area, so those marks will let doctors in the future know that radiation has already been given and also mark the spot. They give the smallest amount of radiation to kill the cells but not do damage to anything else.

Chemotherapy, on the other hand, is meant to kill any cells which may have left the original tumor site and traveled via the lymph and blood system to distant places. Usually this is only given if the cancer is found to be "invasive" - which means they can already see that it's left it's capsule and spread out locally into the tissue. That's what they'll be looking for on pathology - to see if there are any features which would warrant chemo (as well as a host of other things such as size, type, hormone receptor status and such). If a tumor is "non-invasive" then surgery and/or radiation is usually recommended without chemo because the cancer cells have been contained within the capsule of the tumor. (I'd given a link when we discussed it last time - it's a good article on how survival and recurrence rates are better when the surgery and radiation are given together in the case of non-invasive cancer; and surgery, radiation and chemo in the case of invasive cancer).

Here's a link to get you started on reading to help your Mom. http://www.breastcancer.org/ There are many good books as well but the bible is The Breast Book by Susan Love, MD (I think that's the name, anyway, you'll find it, it's everywhere). Warning - the reading is scary and overwhelming at times. Read what you have to read to become informed but then stop. Learn the basics and then take your questions to your doctor's appointments. You will want to start looking for a good breast surgeon and radiation oncologist at least. Oh yes, and a good support center where she can "let it all hang out" with others who've been through it and have the same emotions associated with it. It is very difficult for all of us "sistas", regardless of the type of breast cancer we have.

I suppose it's kind of good that they're not sure she'll need chemo - maybe they haven't yet spotted an invasive component to the tumor which would be great news. (It's kind of nice to find the good news along with the bad when it comes to this disease. ). By contrast, on my initial biopsy we knew right away it was invasive and that I would need chemo. Hopefully surgery and radiation would be the end of it for her. Good luck reading and you know where to find us if we can be of help or support.

to you and your Mom. Thanks for being so supportive of her.

 

[snappy]

Sillyme, I am thinking your mom has already had a biopsy. I would advise you to start a file and ask for copies of the reports from all tests and procedures, especially the pathology reports. Also, whatever questions your mother has, you may want to write them down before the appointment. I found it helpful to have reading material (preferably light and fun stuff) in hand when I had appointments, invariably there are waits involved, and it sure helped take my mind off things. I also used a walkman and listened to calming music.

I think if possible it would be great if someone could accompany your mom to appointments. That was a great comfort for me.

I am glad you are there for your mom. Hats off to you.

I did not have radiation so I can't help with your specific question. I am betting you will get other helpful responses here though.

Ask questions here anytime throughout this process. It is actually quite rewarding and even healing for us here to support others facing BC.

Glad Dan and Laurajean directed you here.

 

[MerryPoppins]

SillyMe, I didn't have radiation either. But I'm glad you came over. If you are comfortable sharing your mother's name, I'll be glad to keep her in my prayers.

I agree about asking for copies of all the reports. Also write down any questions you have and take the list with you to appointments. I tend to forget what I wanted to ask when I'm stressed. Tell your mom to find a support group. If she's not comfortable with a local group, then have her find a group online. It helps to be able to share how you feel emotionally with folks who have been there.

Above all, stay positive. Cancer treatments have come a long way. Thinking that you can beat it does a lot to help you actually beat it. Some people are defeated before they begin the battle. That's not the way to go! Be your mom's biggest cheerleader.

 

[SillyMe]

Thank you all sooo much. I will check out the website and I will make time this weekend to go back on all your posts. I also plan on taking a trip to the mall and will look for the book.

Believe me, my mom will have 110% of my support. We have always been very close. We make sure we talk to each other every day. I couldn't imagine my life without her. I know she'll get through this and my stepdad, my sister and I will all make sure that happens. Thank you again.

 

[laurabelle]

~~~***Good afternoon GAGWTA sistas***~~~

Linda- Night shift, how could I forget! (ok, don't answer that! )

Silly Me - I'm so sorry... I'm glad you came here! You've gotten alot of great advice already. The link Linda gave you is one of my favs., it will walk you through... Try not to read more than you need to at the moment, until you know more info.

Laurie- We have no fundraising techniques! lol! We just send out emails saying we're racing and asking people to join our team or make a donation, that's it. We have 186 members of our team. Total raised as of today is $18,186...I topped my goal and raised $505.

I didn't bring my camera last night, but a friend just sent me some pics of the party.

Here's me and my friends JenT & JenP

Survivors

I'll take lots of pics tomorrow!

 

[MerryPoppins]

SillyMe, she's bound to do great with such a loving support system. Hang in there. Take care of yourself and keep us informed!

 

[need_a_Disney_fix]

This is happening so fast! My mom had her first chemo today with Taxol. She went to her first appointment yesterday with a surgeon and her first oncology appointment today. They did not have the pathology report back yet, but the oncologist wanted to start her ASAP. Being a nurse in my previous career, I don't think I like the sound of that, but my hopes are VERY high. My dad has been so super through this and has helped Mom sooo much. Mom will go back in a week for another round and a week after that. At the end of the month, they will decide if she will need additional chemo drugs in conjunction with the Taxol. She was laughing about the fact that she may wake up with all of her hair on her pillow. Ummm...I don't think it happens THAT fast. I (we) have no clue what is in our future, but we are taking it one step at a time. Mom is really kicking herself that she did not pursue this sooner, but we cannot look back...only ahead. I love my mom so much.

 

[MinnieM3]

Laurie, it does seem to go quickly sometimes. Taxol was hard on me; I hope your mom does well.

I was wondering, did anyone else have a "Cancer Song?" For me, it was ""Calling All Angels." I can't remember who it's by. But, I felt like that song came out just for ME when I needed it. I would sing it so loudly in the car when it came on. Really gave me a lift when I needed it.

Anyone else have a song or something that just triggers a "Cancer" memory? Meatloaf's whole Bat Outta Hell CD does, too, as I listened to that while having Chemo.

Had my port flushed today. It's so weird to go to the chemo lab and see people there and know that they're going through what I did. Just strange.
GAGWTA

 

[need_a_Disney_fix]

The doctor yesterday was saying Mom would have a port, but today the nurse said her veins looked real good and wouldn't need one right now. Could her veins go to pot after a while? I guess I would like to see her get one if she starts to feel like a pin cushion.

 

[Cruise04]

Hello everyone - just stopping by to see how everyone is doing.

SillyMe - my mom had radiation the first time she was diagnosed. Radiation is put on the spot that the lump would have been found at. They mark the spot and "zap" it with radiation for a pre-determined amount of time. For my mom, it was like 5 minutes. It was a daily treatment that lasted 31 days. She experienced some "burn" from the radiation around her 25th day if I remember right (this was in 1998 so I'm probably a bit off). Once the "burn" happened then she was a bit uncomfortable - more itching because her skin started to peel in that area. Other than that she was very comfortable and didn't experience any tiredness, not like with chemo. Mom also had Taxol and something else - she had two meds both times she went through chemo, but Taxol was her main med. I will keep your mom in my thoughts and prayers as well as you and your family. This is now YOUR cancer too - it took me a long time to realize that with my mom. It wasn't just her life we were talking about now, it was mine and my daughters, and my future grandchildren - greats and all. I agree with what has been said - get as many of the pathology reports as possible and if you are able, and she doesn't mind, go to her appointments with her oncologist and surgeon with her. You will need to know what they are talking about and what the jargon and everything is. HUGS!!!!!

And to the rest of you on this thread - with tomorrow being October 1 - I wanted to send all my prayers and love to you all!!!! You all amaze me and inspire me about what life really is about and that life DOES go on and people DO survive this stupid disease. It was a long time after my mom died that I could actually say that. Laura - I hope your race is awesome, even if you can't participate - and that amount of money is absolutely amazing!!!! BRAVO.

I haven't been on here lately because I've been pro-active about my life in the last couple of months. It hit me in the beginning of July as to how very unhealthy I was. I began working out and spending a lot of time over on the WISH board. I'm happy to report that I've lost 33.5 pounds and have a long way to go but I will get there. I need to get healthy, there are so many avenues that are batting against me due to past histories with family that I needed to try everything I could to finally be the person God meant me to be. And I'm getting there!!!!!


I hope you all have an awesome October!!!! Just think PINK
Chris

 

[Pea-n-Me]

Chris, congratulations on your weight loss, that's awesome! Becoming more healthy is something that's always helpful on many different fronts.

Thanks for continuing to post. It must be so hard to think about your mother. I worked with a girl the other night who lost her mother to colon cancer. This girl is newly pregnant for the first time and when she talked about her Mom she began to cry she was missing her so much. Of course this always hits a nerve with me so the two of us are standing there (at 3am, LOL) bawling about her mother. She apologized for getting over-emotional and said she felt silly for feeling that way. I told her not to apologize, I don't blame her for feeling that way, and she had every right to be missing her Mom.

 

[NHAnn]

gggrrr...jsut wrote out a long post and poof---it's lost int eh balck hole of posts

Chris...so good to see you, you're posts are always so friendly and supportive. So for your news, let me jsut say - Wow, you go girl!!!

MinnieM3..my "cancer song" is one I posted on this threa d back much ealier in the summer...Kenny LOggins "Your Heart Will Lead You Home" from the Tigger movie. Reminds me of you all, my other DISfriends, my Br Ca support group, and my family and friends.

Need_a_fix..your mom is lucky to have you, and you too SillyMe.

I finished my radiation in early August, and I'm feeling well and "normal" now. The link Linda gave you is helpful. The techs/thrpists where I had my treatment were so supportive that it would have actually been a pleasure, the treatment itself took less than 5 minutes a day. What was hard for me was the the daily grind(even though it was right here in town, less than 15 minutes if traffic was OK) - the daily dose of reality as to WHY I was there was sometimes more difficult for me than the physical side effects. I am very fortuante that my cancer was not invasive and I did not need chemo, so my physical side effects were limited to some skin irritation and some fatigue.

For those of you supporting your moms, remember that it's normal for patient AND family and support-givers to have periods of doubt and fear and despair. But hopefully, you both dont' get too down at once, and you each have other outlets to vent to as well. I think it IS important to have a place where you CAN whine without fearing bringing someone down. You can use us for that, we do it to each other all the time

 

[Pea-n-Me]

MinnieM3, I don't know that I have a Cancer Song persay. But if I had to name something musical related to my cancer journey it would be the CD I made of baseball-related songs that I created for our Relay for Life team this spring which had a Red Sox theme. I was up until 2am downloading songs that night, LOL, I'd never done it before. I gave a copy to each member of my Relay team as part of their gift from me, and this past summer I listened to my own copy a lot in the car. Many of those songs are oldies but they now remind me of my recovery from cancer as well as how much love from friends and family surrounds me as was evidenced in that wonderful experience. Funny, because one of the songs on there is Paradise By The Dashboard Light.

 

[MinnieM3]

MinnieM3, I don't know that I have a Cancer Song persay. But if I had to name something musical related to my cancer journey it would be the CD I made of baseball-related songs that I created for our Relay for Life team this spring which had a Red Sox theme. I was up until 2am downloading songs that night, LOL, I'd never done it before. I gave a copy to each member of my Relay team as part of their gift from me, and this past summer I listened to my own copy a lot in the car. Many of those songs are oldies but they now remind me of my recovery from cancer as well as how much love from friends and family surrounds me as was evidenced in that wonderful experience. Funny, because one of the songs on there is Paradise By The Dashboard Light.

Paradise! I must play taht daily in the car! Anyone who sees me at a stop light get a real show! GREAT tune!

 

[laurabelle]

~~~***GAGWTA sistas***~~~


Chris- It's good to hear from you! I'm glad you are getting healthier with your diet! I've revamped my eating too. I get healthy habits, then lose them again...but this time is for life! I'm following Joe Dillon Diet (and BTW- not strictly!) a very healthy, active bc sista of mine told me about it. I really like it and I'm getting the family eating healthier too! I don't buy much in the way of prepackaged food and junky snacks now, I was doing too much of that lately, or I should say, hubby was doing alot of the shopping... Now I will buy something really yummy and "worth it" in a small amount every week or so, and enjoy it more. Here's the website: http://www.7naturallaws.com/
I have more info in a Doc. file...if you'd like it, PM me.

Laurie- I had a port and really needed it, but I know others who did all their chemo without one, no problems. The hair loss starts around 2 weeks after the 1st round. It begins gradually and then kind of snowballs! I cut it short right before chemo started, then I shaved mine. I was getting tired of seeing it everywhere...clogging the shower, in my food...you get the idea. But some people don't shave. Either way, she can shop for her headcoverings now to be prepared.

Race day was wonderful...even though I didn't actually race, lol! The weather was gorgeous! We had a photographer take our team pic, I can't wait to see it. I'll post pics when I get them downloaded.

 

[Pea-n-Me]

GAGWTA!!

The doctor yesterday was saying Mom would have a port, but today the nurse said her veins looked real good and wouldn't need one right now. Could her veins go to pot after a while? I guess I would like to see her get one if she starts to feel like a pin cushion.

Disney_fix, I did my 8 rounds of chemo without a port. It's a little tricky because they can only use the one arm (due to the risk of lymphedema in the arm on the affected side). Having received my chemo in the middle of winter, one day it took 5 sticks to get a line, but it was my own fault because I'd been cold in the car on the drive in and didn't say anything - my veins must have constricted big time (the one day my friend drove me in and not my husband - dumb, I know ). That day they'd suggested a port but I didn't want one so I promised I'd keep warm in the car and hydrate on the way in (which I did religiously thereafter, LOL). They'd hot pack my arm as soon as I got there (to dilate the veins) and I never had a problem stick again. I was worried how my veins would be for the long term but they're fine now, nobody ever has a problem drawing blood or getting a line in. It's personal preference - I preferred the many sticks to the port, some may prefer the other way around and I wouldn't blame them. Needles don't bother me.

As Laura said, about two weeks or so after the first chemo you start to see hair loss. It doesn't happen overnight, and your scalp is surprisingly sore and achy. In retrospect I should have cut all my hair off ahead of time, but I was still working and distraught because my dog was dying so I waited since it seemed ok. Then all of a sudden it started coming out very fast (everywhere is right ) and that's when I had it whiffled. I was warned by my team not to shave my head because if it nicked and infection set in it could delay my chemo, so I whiffled it at first, but eventually shaved it anyway because I hated the way it looked. (Man, how bad it that - true, dang nurses make the worst patients).

Soft caps are essential for nighttime and around the house, her head will get cold, and because it's sore she'll need something soft against the pillow. I got mine in the Wig Boutique at the hospital - I'm sure they sell them in most oncology centers and wig shops as well as online. They make nice gifts - get the really pretty ones. I had good luck with a very comfortable wig which happened to be stylish and cute, but many women I've met did not like or wear their wigs, they preferred either to be "au naturale" or wear a hat, scarf or cap. Again, personal preference.

If there's anything you want to ask, fire away. People here have lots of varied experiences and great ideas. Best of luck to your Mom.

 

[MinnieM3]

I'm not sure if I answered this, but I had/have a port and couldn't have gotten through chemo without it. It's in my chest and it's a double. I hope to finally get it out, after 2 years, this Dec.

I did the hat/bald thing. Worked for me! Ask away! That's what we're here for!

 

[MinnieM3]

Whoo-Hoo!! I got published!

I submitted a personal essay to this magainze I found out about online. They were doing a special October issue on women and breast cancer.

I sent my piece in and got an email today that I was accepted and I'm in!

I am sooooo excited!! I can post it here or send anyone who wants to read it a PM. I can't wait to see it in print!

The magazine is new....it's by women, for women and it's called Penwomanship.

Yipppeeeee!!

 

[snappy]

Whoo-Hoo!! I got published!

I submitted a personal essay to this magainze I found out about online. They were doing a special October issue on women and breast cancer.

I sent my piece in and got an email today that I was accepted and I'm in!

I am sooooo excited!! I can post it here or send anyone who wants to read it a PM. I can't wait to see it in print!

The magazine is new....it's by women, for women and it's called Penwomanship.

Yipppeeeee!!

Very cool MinnieM3.

I would love to read it. Please do either post it here or PM it to me.

I am glad to find out about the new magazine. Glad you posted about it

congrats!!!!!