inflammatory breast cancer

marybeth3

My mother was just diagnosed with inflammatory breast cancer, stage 2. We are meeting with the oncologist this week, and she is having a sentinel node biopsy and port inserted next week. We are very scared -- we have no family history of breast cancer. The surgeon has told us that she will have to complete chemo before a mastectomy. Do any of you have suggested questions for the oncologist? Thanks!

jennyjen

Your Mother and Inflammatory Breast Cancer
I'm an advanced breast cancer survivor and have gone through much of the same. The good news is advancements in breast cancer treatment has gone a long way and the survival rate is very high. A high-five to you as you have taken the key step in coping by soliciting help from a support group. Here are some questions you may want to address:

1. Why is a sentinel node biopsy important and what will this reveal? How big is the incision and where? If it helps, don't hesitate to ask the oncologist to draw a picture.
2. How did the oncologist determine your mother is at Stage 2? Is she estrogen positive or negative?
3. Ask what kind of drug(s) will be used for the chemo, possible side effects, the number of treatments and how often she will go for treatment. Also ask what medicines can be prescribed to help ease the side effects. I suggest that someone in your family keep a journal. Request a free journal from Lance Armstrong's Livestrong Foundation, www.livestrong.org. Meanwhile, ask the oncologist if they have something similar that they can give to you now.
4. Depending on her overall health and your mother's age, ask what to expect post surgery, i.e., wound care, diet, etc. Is reconstruction an option?
5. Will she need radiation? Why or why not?

Rest assure that your mother and your family will get through this. It will take a lot of work, understanding, patience, and love. Again, the good news is all this is free.

ladybug22

inflammatory
I am 54 years olds last Aug i was diagonsed with I B C There was no b c in my family.With in one week i had my port put in and was on chemo.I complete chemo then had mastoctomy then had 33 rads, went back on some chemo which is taxol herceptin i have to take this every 3 weeks. This does not make me sick. i worked and still work. the first 4 rounds of chemo made me sick. what i am on now is not bad. You and your mom need to take one day at a time. I am clean now. i will pray for u and your mom I dont no what stage my was i didnt care it didnt matter i just had to fight back clara. I hope this helps u some

marybeth3

jennyjen said:

Your Mother and Inflammatory Breast Cancer
I'm an advanced breast cancer survivor and have gone through much of the same. The good news is advancements in breast cancer treatment has gone a long way and the survival rate is very high. A high-five to you as you have taken the key step in coping by soliciting help from a support group. Here are some questions you may want to address:

1. Why is a sentinel node biopsy important and what will this reveal? How big is the incision and where? If it helps, don't hesitate to ask the oncologist to draw a picture.
2. How did the oncologist determine your mother is at Stage 2? Is she estrogen positive or negative?
3. Ask what kind of drug(s) will be used for the chemo, possible side effects, the number of treatments and how often she will go for treatment. Also ask what medicines can be prescribed to help ease the side effects. I suggest that someone in your family keep a journal. Request a free journal from Lance Armstrong's Livestrong Foundation, www.livestrong.org. Meanwhile, ask the oncologist if they have something similar that they can give to you now.
4. Depending on her overall health and your mother's age, ask what to expect post surgery, i.e., wound care, diet, etc. Is reconstruction an option?
5. Will she need radiation? Why or why not?

Rest assure that your mother and your family will get through this. It will take a lot of work, understanding, patience, and love. Again, the good news is all this is free.

inflammatory breast cancer
Thank you so much for responding to my questions. You have been extremely helpful, and it has helped put me at ease (somewhat) about what we can expect. I know that we will have to take it one day at a time, but we have a very strong network of family support. Thanks again!

marybeth3

ladybug22 said:

inflammatory
I am 54 years olds last Aug i was diagonsed with I B C There was no b c in my family.With in one week i had my port put in and was on chemo.I complete chemo then had mastoctomy then had 33 rads, went back on some chemo which is taxol herceptin i have to take this every 3 weeks. This does not make me sick. i worked and still work. the first 4 rounds of chemo made me sick. what i am on now is not bad. You and your mom need to take one day at a time. I am clean now. i will pray for u and your mom I dont no what stage my was i didnt care it didnt matter i just had to fight back clara. I hope this helps u some

inflammatory
Thanks so much -- this really helps a great deal! It was also encouraging to hear that you were able to continue working. My mom has been a preschool teacher for 25 years, and she is already ready to quit for the rest of the school year. My sisters and I have told her that would be the WORST thing for her to do! I think if she feels well enough, she should work whenever she can. You are a very brave, strong woman, and thanks again for your concern.

judithhmf

marybeth3 said:

inflammatory
Thanks so much -- this really helps a great deal! It was also encouraging to hear that you were able to continue working. My mom has been a preschool teacher for 25 years, and she is already ready to quit for the rest of the school year. My sisters and I have told her that would be the WORST thing for her to do! I think if she feels well enough, she should work whenever she can. You are a very brave, strong woman, and thanks again for your concern.

ibc survivor
Marybeth,
I am a 4 year survivor of IBC stage IIIB. I also had chemo first and continued to work. I was tired but felt better being surrounded by my co workers who were very supportive. I had adriamycin and cytoxin chemo every 3 weeks x 4 then taxotere every 3 weeks x 4. I was ER/PR + so I was put on arimidex for 5 years. A modified radical mastectomy followed with 30 rounds of radiation. I had some side effects but nothing I would let get me down. You just take one day at a time and you will be surprised how fast the time goes by. Keep busy...Nothing like preschoolers to take your mind off things.

ladybug22

marybeth3 said:

inflammatory
Thanks so much -- this really helps a great deal! It was also encouraging to hear that you were able to continue working. My mom has been a preschool teacher for 25 years, and she is already ready to quit for the rest of the school year. My sisters and I have told her that would be the WORST thing for her to do! I think if she feels well enough, she should work whenever she can. You are a very brave, strong woman, and thanks again for your concern.

marybeth
I am a teacher aid.The first chemo will take longer they give it 2 u slow. The next day i had to go back and get a shot is called neweasta .I took my chemo on Thursday went back on Friday had my shot and if i could went back to work on Monday. Some times it took longer4 or 5 days to get over. we are all difference. You will get so much info so fast cant remenber it all. I lost my hair or i should say i shaved my head. she need to go get a wig

marybeth3

ladybug22 said:

marybeth
I am a teacher aid.The first chemo will take longer they give it 2 u slow. The next day i had to go back and get a shot is called neweasta .I took my chemo on Thursday went back on Friday had my shot and if i could went back to work on Monday. Some times it took longer4 or 5 days to get over. we are all difference. You will get so much info so fast cant remenber it all. I lost my hair or i should say i shaved my head. she need to go get a wig

Thanks for the update on the
Thanks for the update on the first chemo treatment. Do you have any suggestions about purchasing wigs? I have been looking at a lot of websites, especially some that can match the wig closely to her haircolor. I'd appreciate any tips. Thanks!

Joycelouise

marybeth3 said:

Thanks for the update on the
Thanks for the update on the first chemo treatment. Do you have any suggestions about purchasing wigs? I have been looking at a lot of websites, especially some that can match the wig closely to her haircolor. I'd appreciate any tips. Thanks!

Ask your chemo center nurse
Ask your chemo center nurse for a good wig place. They will know. You will have about two weeks after the first chemo before the hair "releases". Go to the wig store with a happy attitude and try on lots of wigs. Have fun. You and your mom will find one that just feels right. I will tell you a story. The point of this story is how lucky your mother is to have you to go with her. I have three daughters but they all live far away, so I went to the wig store by myself. After trying on a few and walking to the full length mirror, this younger woman commented that she like the one I was currently trying best. We started talking and she said she was there with her mom. I told her and her mother that my daughters were far away and I really appreciated the opinion. I thanked the mom for lending me her daughter. Her mom said her daughter was not only a hair stylist but a wonderful loving daughter and she would be happy to share. Then all three of us cried a bit. It was a really good cry. There are a few good cries out there. Be open to them and let me thank you, on your mother's behalf, for being such a good daughter! Best wishes, love Joyce

jennyjen

Wig
The oncologist's office will most likely be a good source of information and may have informational brochures already on display in the waiting room. Check if mom's insurance will cover a portion, if not all, of the wig cost. It's also a good idea to look into skull caps or sleep caps made from soft cotton knit (check out Wittmann Textiles, 800-890-7232 or www.wittmanntextiles.com). I found these things so comfortable to wear and you can get it in different colors. Hats are also cute and will protect the scalp and ears from sunburn.

KathiM

marybeth3 said:

Thanks for the update on the
Thanks for the update on the first chemo treatment. Do you have any suggestions about purchasing wigs? I have been looking at a lot of websites, especially some that can match the wig closely to her haircolor. I'd appreciate any tips. Thanks!

Ask her treatment center...free wigs!
My center had free wigs, one per customer...

I ended up with a $250 wig...at no cost...(I checked it out on the internet.)

Seriously, it was beautiful. The cost was underwritten by the ACS...

I wore it for a total of 30 minutes, then switched to scarves and hats. I'm just a 'go naked' sort of a gal....

Hugs, Kathi

base61ball

The American Cancer Society is an invaluable resource for wigs, etc.

My insurance covered the first wig as a "prosthesis".

toberry

judithhmf said:

ibc survivor
Marybeth,
I am a 4 year survivor of IBC stage IIIB. I also had chemo first and continued to work. I was tired but felt better being surrounded by my co workers who were very supportive. I had adriamycin and cytoxin chemo every 3 weeks x 4 then taxotere every 3 weeks x 4. I was ER/PR + so I was put on arimidex for 5 years. A modified radical mastectomy followed with 30 rounds of radiation. I had some side effects but nothing I would let get me down. You just take one day at a time and you will be surprised how fast the time goes by. Keep busy...Nothing like preschoolers to take your mind off things.

inflammatory breast cancer
my sister was diagnosed july 1,2009 with ibc stage 4. She is geting really depressed. She is in a study with 6 others. on Tuesday she found out that they took 2 of the ladies out of the group that had some problems with the treatment. She is starting to give up already, because everything she has read does not give much hope and she has not been able to locate anyone who has been a survivor of this horrible disease. I am new to this board and would appreciate it if there are any ibc survivors who can help lift my sisters (and my) spirits and give us some good news.

meena1

toberry said:

inflammatory breast cancer
my sister was diagnosed july 1,2009 with ibc stage 4. She is geting really depressed. She is in a study with 6 others. on Tuesday she found out that they took 2 of the ladies out of the group that had some problems with the treatment. She is starting to give up already, because everything she has read does not give much hope and she has not been able to locate anyone who has been a survivor of this horrible disease. I am new to this board and would appreciate it if there are any ibc survivors who can help lift my sisters (and my) spirits and give us some good news.

ibc
I was diagnosed on July 7,2008 with IBC, stage 4. I had 12 chemo sessions, and a masectomy on Nov 11,2008. I am doing really well now. I was also terrified, and i had a very rough time. i also had radiation. I am a survivor! I feel really well now. Please do not give up hope!

Christmas Girl

meena1 said:

ibc
I was diagnosed on July 7,2008 with IBC, stage 4. I had 12 chemo sessions, and a masectomy on Nov 11,2008. I am doing really well now. I was also terrified, and i had a very rough time. i also had radiation. I am a survivor! I feel really well now. Please do not give up hope!

Welcome, toberry & meena1
My own diagnosis was different. As you can see from this thread, we do have some members with IBC.

We're all here to support and encourage each other. Glad you found us, while sorry for the reason.

Visit often, whenever you'd like or need to.

Moopy23

Christmas Girl said:

Welcome, toberry & meena1
My own diagnosis was different. As you can see from this thread, we do have some members with IBC.

We're all here to support and encourage each other. Glad you found us, while sorry for the reason.

Visit often, whenever you'd like or need to.

Like Christmas Girl
Toberry and Meena1, I also welcome you both and am glad you found us. There is another thread on IBC. I just posted there as well. Toberry, you will find other IBC survivors there, along with Meena1. And we are all survivors here, so you've come to the right place.

Wishing you both all the best.

Alexis F

Moopy23 said:

Like Christmas Girl
Toberry and Meena1, I also welcome you both and am glad you found us. There is another thread on IBC. I just posted there as well. Toberry, you will find other IBC survivors there, along with Meena1. And we are all survivors here, so you've come to the right place.

Wishing you both all the best.

Hi Meena and Toberry!
Hi Meena and Toberry! Welcome to the site.

amiga of pat

Moopy23 said:

Like Christmas Girl
Toberry and Meena1, I also welcome you both and am glad you found us. There is another thread on IBC. I just posted there as well. Toberry, you will find other IBC survivors there, along with Meena1. And we are all survivors here, so you've come to the right place.

Wishing you both all the best.

survivors stories
My oldest, dearest friend has IBC. She has had 18 weeks of chemo, 12 weeks of other meds in her "port", a double masectomy this past Tuesday. She has had lots of side effects (the worst curently is the neuropothy in her feet and hands), but yesterday the word came back that there were live cancer cells in the nodes that were removed along with her breasts. She now has an appointment with her oncologist to most likely start another round of chemo. She was soooo ready to start radiation in another week or so, but now is so demoralized about this information that she is ready to give up. She does not want to go throuogh chemo again. Her age is a youthful 72. I want so much to be helpful, but it's hard to know what the best approach is. She needs to know that this not the end; that she can still beat this nasty disease. Help, please.