Inflammatory Breast Cancer Anyone?
Also, what is next you guys? Does the surgeon refer you to the oncologist?
Do you prefer wigs or scarves? I live in Florida and am worried that a wig will be to hot for me and I have heard that they are itchy too. Any ideas for cute things to wear on your head? I want to get all of this taken care of before I start chemo just to be prepared.
Have a great Sunday everyone!!
Vicki
Comments
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Welcome Vicki....
So sorry to hear about your diagnosis, but glad you found us!! I can not help you personally with Inflammatory Breast Cancer as I have Invasive Ductal Carcinoma Breast Cancer. Also I did not need Chemo, just Radiation. Someone will be along that can help you, I mainly wanted to welcome you!
I had a Surgical Oncologist that refered me to my Medical Oncologist and Radiation Oncologist. I did not see Med Onco until after my surgery. I did not see Rad Onco until after I saw Med Onco. Sorta like a snowball effect. Every area seems to be different though. There are women who have met with all three within a week or even on the same day.
Others will be here shortly to give you tips about wigs & scarves.
If you go to Heavenlyhats.com and sign up, they will send you a box with about 5 hats in it for free. This was started by a 10 year old boy and is still going!!!
Hope I was of some help.
Pammy 0 -
Hi Vicki
I really am sorry to hear about the inflammatory breast cancer. I know nothing about it but I have found that for me its better to be careful what you read. I think its better to get your information from your doctor because your mind can get carried away with the information you get.
As far as wigs vs scarves go, I just shaved my head last wk monday. I live in Wisconsin and you know its a whole lot cooler here. I have a wig which feels a little tight and itchy for summer so I think I will use it for special occasions and for when it gets cooler since I wont finish chemo until mid october. My hair probably will still be pretty short thru the winter. The wig will help keep my warm. You can get some pretty cute scarves. My daughter and I went on line and orderred some. Also watch that your scalp doesnt get burned.
Let us know how you do. There is a whole lot of support here from all over and we are all going thru this together.
Hang in there
Linda T0 -
Sorry
Welcome to the bc Board... Sorry about your diagnosis... I have IDC and am still awaiting my surgery.. This coming Wed..(Yikes scared to death) but what helped me was reading the book called "Dr Susan Love's Breast Book" It's available at most book stores. It's the The bible for Women with breast cancer..
Good Luck in your Journey.. I will say a prayer for you right now!!!
Huggz Calleen...0 -
Vicki
Hello, Vicki, and welcome, though I, too, am sorry for the reason you are here. Googling, or otherwise surfing for info about any form cancer can be scary. I just don't do it because every time I do, I get scared again.
However, if you do surf, be sure to note the dates of the information. Cancer treatments progress (thankfully) so fast that information can become out-dated quickly. Also, reputable websites include the ACS site, of course, and www.cancer/gov, the Mayo Clinic site, and the John Hopkins site. Your oncologist will be able to give you the most accurate information, based on the results of the pathology report done after your surgery.
Pammy's post has the usual order of doctor visits. Really, nothing is definitive until after surgery and the path report. (Sometimes not even then.)
Heavenlyhats does send you a variety of head coverings. For the summer, I like hats. I have wigs, but wear them rarely and then just for a short time. Too tight and hot. Your local ACS locations will give you free coverings and as well as a free wig.
You have come to the right place for support and understanding, Vicki. You will not be alone in this journey.0 -
Welcome, VickiMoopy23 said:Vicki
Hello, Vicki, and welcome, though I, too, am sorry for the reason you are here. Googling, or otherwise surfing for info about any form cancer can be scary. I just don't do it because every time I do, I get scared again.
However, if you do surf, be sure to note the dates of the information. Cancer treatments progress (thankfully) so fast that information can become out-dated quickly. Also, reputable websites include the ACS site, of course, and www.cancer/gov, the Mayo Clinic site, and the John Hopkins site. Your oncologist will be able to give you the most accurate information, based on the results of the pathology report done after your surgery.
Pammy's post has the usual order of doctor visits. Really, nothing is definitive until after surgery and the path report. (Sometimes not even then.)
Heavenlyhats does send you a variety of head coverings. For the summer, I like hats. I have wigs, but wear them rarely and then just for a short time. Too tight and hot. Your local ACS locations will give you free coverings and as well as a free wig.
You have come to the right place for support and understanding, Vicki. You will not be alone in this journey.
Welcome, Vicki -
Please, PLEASE try as much as possible to resist the urge to surf around the net looking for information.
Both my surgeon and oncologist forbade me to go to any site but the American Cancer Society, both explaining that so much of the information you'll find just googling around is 1) outdated, as Moopy said, 2) biased/incomplete, and/or 3) just plain wrong.
I live in a part of Los Angeles where it gets up to 100-110 in the summer, so I've chosen to wear hats, rather than wigs or scarves. I really like the ACS' retail site, tlc (tlcdirect.org) -- I've placed two orders with them so far, and their prices, selection, and customer service have been great.
I'm glad that at least *some* of your web surfing was positive -- you made it here! The time right after my diagnosis was SO overwhelming and frightening -- know that we've all been where you are, and will help in whatever way we can.
Traci0 -
The first surgeon I saw
The first surgeon I saw thought I had inflammatory breast cancer. It didn't show on the mammogram or ultrasound. She did a biopsy of the skin and it wasn't. I changed surgeons and the second one redid the biopsies. I had invasive Ductal carcinoma with metaplastic differentiation. I had read up on it (IBC) at the time but don't remember that much now as that was 2003.
I went through treatment in Connecticut during the fall and winter so heat wasn't an issue but I found I liked the hats better. I wore a cap around the house which you can see on my expressions page. Without hair it was drafty. I had a wig but just left it on the dresser and looked at it. It gave me comfort to know I had it if I needed it but turned out I didn't. I got it from Paula Young online. They have inexpensive ones. After my hair regrew I gave it to Goodwill.0 -
As Lili would say....
Welcome to the club none of us wanted to join. You will find so much support and good information here. I am sure when you are refered to your oncologist you will have many more answers. Make sure to take a list of questions, a pen and paper to write the answers down..and a friend if you can t help you remember all that they say. I know I only heard half of it.
I also recieved a boxof hats from "Heavenly Hats" they are cute as can be and i have got lots of use from them. I preferred ball-caps, and in the winter little turbans to sleep in when my head was cold. I absolutely hated my wigs although i had 2 really cute ones, i only wore them when there was an occassion, and a few hours to work. They were itchy and hot. and when the weather got warm and my hair started growing back a little I've ditched them altogether.
I hope you also have a great Sunday. and keep in touch!
Hugs, jackie0 -
Hi, I just want to welcomerjjj said:As Lili would say....
Welcome to the club none of us wanted to join. You will find so much support and good information here. I am sure when you are refered to your oncologist you will have many more answers. Make sure to take a list of questions, a pen and paper to write the answers down..and a friend if you can t help you remember all that they say. I know I only heard half of it.
I also recieved a boxof hats from "Heavenly Hats" they are cute as can be and i have got lots of use from them. I preferred ball-caps, and in the winter little turbans to sleep in when my head was cold. I absolutely hated my wigs although i had 2 really cute ones, i only wore them when there was an occassion, and a few hours to work. They were itchy and hot. and when the weather got warm and my hair started growing back a little I've ditched them altogether.
I hope you also have a great Sunday. and keep in touch!
Hugs, jackie
Hi, I just want to welcome you to the site. And, to say how sorry I am that you have bc. You will find lots of support here. Just post and everyone will help you.
Hugs, Leeza0 -
I B C
I am sorry to hear your dx.I was dx in 07 with I B C just letting you i am clean for over a year now. Tuesday the surgeon will refer you to onc. my onc had me take a pat scan and i had a port put in for my chemo. my chemo was first then i had breast removed then rads.keep in mine that was in my case your may be difference lots of luck .Take someone with you and tape recorder would help lots of info comming your was fast.the onc will move fast with you are they did with me. please take one day at a time. You shouild go and get your wig so the color will be right and there is a heaventy hats.con will send you a nice hats and scarves. i will try to send you mt phone number in your mail box on here0 -
Take someone w/ you to appts.ladybug22 said:I B C
I am sorry to hear your dx.I was dx in 07 with I B C just letting you i am clean for over a year now. Tuesday the surgeon will refer you to onc. my onc had me take a pat scan and i had a port put in for my chemo. my chemo was first then i had breast removed then rads.keep in mine that was in my case your may be difference lots of luck .Take someone with you and tape recorder would help lots of info comming your was fast.the onc will move fast with you are they did with me. please take one day at a time. You shouild go and get your wig so the color will be right and there is a heaventy hats.con will send you a nice hats and scarves. i will try to send you mt phone number in your mail box on here
I can't echo enough the folks who've recommended that you take someone with you to at least the first few dr's appointments with the surgeon and oncologist.
I think all of us are so overwhelmed in the first few days and weeks right after hearing someone tell us we have cancer that we can't really understand all the information that's coming at us. My girlfriend came with me to every appointment, and took notes for me (I tried to take notes, but then I'd look down at the paper at the end of the appointment, and there would be nothing there!).
I can't tell you how many times she'd say afterwards, "When the doctor said this...," and I'd say, "He DID? I never heard that!"
Traci0 -
Welcome Vicki,TraciInLA said:Take someone w/ you to appts.
I can't echo enough the folks who've recommended that you take someone with you to at least the first few dr's appointments with the surgeon and oncologist.
I think all of us are so overwhelmed in the first few days and weeks right after hearing someone tell us we have cancer that we can't really understand all the information that's coming at us. My girlfriend came with me to every appointment, and took notes for me (I tried to take notes, but then I'd look down at the paper at the end of the appointment, and there would be nothing there!).
I can't tell you how many times she'd say afterwards, "When the doctor said this...," and I'd say, "He DID? I never heard that!"
Traci
I can not
Welcome Vicki,
I can not help with your dx as I have ILC and IDC but cancer.org and Dr. Susan Love's Breast Book has been the best information for me to reference before and after all the appointments. Oh and, of course, the VERY best source has been everyone here!!
Hugs and in my prayers,
K0 -
IBCladybug22 said:I B C
I am sorry to hear your dx.I was dx in 07 with I B C just letting you i am clean for over a year now. Tuesday the surgeon will refer you to onc. my onc had me take a pat scan and i had a port put in for my chemo. my chemo was first then i had breast removed then rads.keep in mine that was in my case your may be difference lots of luck .Take someone with you and tape recorder would help lots of info comming your was fast.the onc will move fast with you are they did with me. please take one day at a time. You shouild go and get your wig so the color will be right and there is a heaventy hats.con will send you a nice hats and scarves. i will try to send you mt phone number in your mail box on here
Ladybug22,
So nice to hear from a survivor of IBC! The info. on the web is so negative concerning it.
I will take my fiance with me to the doctors appts and I think we are going to get a tape recorder to take with us. The doctors don't mind you recording them?
I did go to heavenlyhats earlier today and put in my order. What a cool organization.
You are the first person who invited me to be their friend. Thanks!! I don't know how to invite anyone yet to be my friend so if you don't get an invite from me right away don't be offended. I'll figure it out.
Love and Light,
Vicki0 -
Just remenber there are survivors and you are one . there is a lady in the chat room that has I B C for over 8 years now.there is a shot to help your blood count to stay up .i cant remenber the name but i had to go the day after my chemo and get the shot.I would ask if i could record them so you dont miss any info.You cant remenber ever thing they are going to tell you.Please i will help you at any time The info on the web is negative that is why i told you i was clean and you will be as well.the onc will start your chemo very soon. Do you have family that can help you as well as your fiance you will need some help.If you work the doctores will ask you are you going to keep working. I dont know how old your are but i would look into s s disablity. everyone is here for you just remenber try to take one day at a time. i will never be offender you are my sister in pink love and hugs claraReikigemgirl said:IBC
Ladybug22,
So nice to hear from a survivor of IBC! The info. on the web is so negative concerning it.
I will take my fiance with me to the doctors appts and I think we are going to get a tape recorder to take with us. The doctors don't mind you recording them?
I did go to heavenlyhats earlier today and put in my order. What a cool organization.
You are the first person who invited me to be their friend. Thanks!! I don't know how to invite anyone yet to be my friend so if you don't get an invite from me right away don't be offended. I'll figure it out.
Love and Light,
Vicki0 -
Welcome, Vicki
We're all here to support and encourage each other. Glad you found us, and glad to have you.
My diagnosis was different, so I cannot directly address IBC.
Best wishes to you. Visit often, whenever you'd like or need to.
Do keep us posted on your progress. We'll be here for you, each step of the way.
Kind regards, Susan0 -
Hi and Welcome Vicki!Christmas Girl said:Welcome, Vicki
We're all here to support and encourage each other. Glad you found us, and glad to have you.
My diagnosis was different, so I cannot directly address IBC.
Best wishes to you. Visit often, whenever you'd like or need to.
Do keep us posted on your progress. We'll be here for you, each step of the way.
Kind regards, Susan
I
Hi and Welcome Vicki!
I didn't have your diagnosis, but, others here have and will address it.
Keep us updated on yourself and welcome again!
Hugs,
Kristin0 -
Today is the day.....ladybug22 said:Just remenber there are survivors and you are one . there is a lady in the chat room that has I B C for over 8 years now.there is a shot to help your blood count to stay up .i cant remenber the name but i had to go the day after my chemo and get the shot.I would ask if i could record them so you dont miss any info.You cant remenber ever thing they are going to tell you.Please i will help you at any time The info on the web is negative that is why i told you i was clean and you will be as well.the onc will start your chemo very soon. Do you have family that can help you as well as your fiance you will need some help.If you work the doctores will ask you are you going to keep working. I dont know how old your are but i would look into s s disablity. everyone is here for you just remenber try to take one day at a time. i will never be offender you are my sister in pink love and hugs clara
that I find out who my oncologist is going to be! I go to my surgeons at 11 to have him check my stitches and tell me what to exect from here on out. It's still a stepping stone though because I won't know all the gorey details until I see the oncologist.
Thanks to all of you for all of your input. What a wonderful group of people we have here on this board. I joined the breast cancer board on ivillage and hardly no one posts on there so I couldn't really find out to much into. Here I have hit a goldmine.
Look forward to getting to know all of you better.
Love and Light,
Vicki0 -
I want to welcome you to theKristin N said:Hi and Welcome Vicki!
I
Hi and Welcome Vicki!
I didn't have your diagnosis, but, others here have and will address it.
Keep us updated on yourself and welcome again!
Hugs,
Kristin
I want to welcome you to the site Vicki!
Sorry for the reason you are here, but, we will support and encourage you along the way!
Post and keep us updated on you!
Hugs,
Susie0 -
I don't know what it ismgray said:Question about your type of cancer
Can you explain to me what inflammatory breast cancer is? thank you
I don't know what it is either.
I have never heard of that type of bc.
I will ask my oncologist at the next appointment about it.
Good luck Vicki!
Hugs,
Susie0 -
Not that after all......mgray said:Question about your type of cancer
Can you explain to me what inflammatory breast cancer is? thank you
I have two cancers in my left breast but neither one of them is inflammatory breast cancer because my skin biopsy came back clear. As to what it is, the best way I can describe it is to say google it because it is hard to explain. And to diagnose. My cancer is invasive carcinoma with ductal and lobular features and the other one is: lobular carcinoma in situ involving the margin. That is what the pathology report says. I will understand more about it all when I see the oncologist on Monday.
Love and Light,
Vicki0
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