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Kattbird
Regular Member


Date Joined Jun 2005
Total Posts : 243
   Posted 6/30/2005 5:07 PM (GMT -7)   
Hi, I was diagnosed with breast cancer yesterday. I'm 47 and scared to death. I don't remember half of what the surgeon told me yesterday other than I definately have to have chemo and something about radiation. I think she said my lump was 2.9 centimeters. I have no idea how big or small a centimeter is. eyes I am going to have to have surgery again to get out whatever cancer may be left in there. I don't know anyone who has had breast cancer to get any help/info from. When getting chemo, does it depend on how bad the cancer is as to how long of treatment you will get? What about hair loss, have most of you experienced that?
I go back to the surgeon next week to talk more. She threw so much at me yesterday and gave me a book and literature and an alternative radiation treatment where they have a needle sticking out of your boob for 5 days instead of going to an office everyday and getting it. Has anyone ever had that treatment? I won't ask any more questions in this post. As I think of things I'll post later. Thank you for any advice/support/help you give. :-)

MNlady13
Veteran Member


Date Joined Jul 2003
Total Posts : 2044
   Posted 6/30/2005 6:09 PM (GMT -7)   
((((Katt)))) I know that you need a big hug about now. Try to take a deep breath and digest all the information in small bites. You did not mention husband or SO, but if there is someone in your life please try to convince that person to go with you to doctor's appointments. It always helps to have another set of ears listening to what you are being told. If that is not possible get a small tape recorder to take along to take the conversation. That way you can listen to it again and again until you understand what your are being told.

There are 2.5 centimeters to an inch, so that gives you some idea of the size of your tumor. I did not do chemo, but we have many gals here who did. I am sure they will share their experiiences with you. I had conventional radiation treatments -- daily for 6 1/2 weeks. It was doable. I was working full time at that time and did all right. Got really tired, but got through it.

I know you are probably still full of questions. Do not hesitaste to ask them You can find out more about all of us by reading the roll call post at the top of the board. Feel free to add your name to the list and share whatever information you are comfortable making public. Where are youe? We are all over the country. Someone may live close to where you are.

Know that you are not alone on this journey. You have found a special group of women who will hold your hand in cyber space, offer advice, answer questions, but most importantily, we understand what you are feeling, your fears and concerns. Please stay in touch and let us know how we can help you. Hugs, Laur in Minnesota, a nine-year 2-month survivor.
"Go confidently into the direction of your dreams. Live the life you always imagined" Thoreau
 
Life is not measured by the number of breaths we take, but by the moments that take our breath away.


Tavish
Veteran Member


Date Joined Jul 2003
Total Posts : 2272
   Posted 6/30/2005 6:36 PM (GMT -7)   
Hi Katt...so sorry for your news, all of us know exactly where you have been, and we can help you every step of the way. You may wish to check the toll call post at the top to see a little more about us and where we are from.

Breast Cancer is very treatable and even curable in many cases. This is not a death sentence, but the next few months will be a challenge. Doable, but a challenge.

Some advice...take a tape recorder, a list of questions in writing, and a friend to the next appointments. Sounds like you did good though, and got a lot of information yesterday! The chemo does not necessarily depend on how "bad" the cancer is, but what kind. There are several chemo routines that cater specifically to certain kinds of cancer, that target certain cells or receptors that it may have. Hormone receptors, for example, are common and exist on 2/3 of breast cancers...and there are specific drugs (oral) that you can take to try and prevent a recurrance. Having positive lymph nodes will likely earn you more chemo, which is standard. 1 cm is a common benchmark for needing chemo, and mine was 2.5 cm...so chemo was given for me.

There are several newer chemos out there, but many of us oldtimers had a fairly routine cocktail. Prepare for the worst but do not expect it.....I found my 4 cycles of chemo (AC) to be pretty tolerable and I worked full time through most of it. I had virtually no nausea and no other bad side effects...not that I loved it, but point is it is not like they show on tv, and you may not be sick at all.

The docs will probably order several tests to help rule out spread of cancer and then go from there. I also did radiation the old fashioned way, daily zaps for 6 weeks. I am over 5 years out from treatment and doing great.

One step at a time, you have lots of info to find out first. Read what you can but not too much, and ask us lots of questions. We're here for you!
Hugs,
Lori


gma
Veteran Member


Date Joined Jul 2003
Total Posts : 2921
   Posted 6/30/2005 6:53 PM (GMT -7)   
Hi Katt you have had some good information from those who know. Breast cancers are as different as people are. There are some that are very slow growing and minimal, and others that are aggressive and harder to fight. First you need to be very comfortable with your doctors. Don't accept everything with out questioning if you have a question. Get a copy of your pathology reports and keep them for reference. You can share the details here and we can help you with what is being said. Also we are spread all over the country, if you saw the Roll Call above, it will give you information as to where we are and our age, etc. It is possible someone could be near you and be able to even meet you for lunch. The last time I said that, the new member wrote back she lived in Nebraska. Nope no one else was near her. LOL. OH, NY-NJ, IN, MI, have several members, KY, TX, CA and some other states have a couple. Just jump right in a feel at home and ask away. You are also allowed to vent, scream, whatever helps, however, some words are edited with *****s. Hugs of welcome, Mary K. (MK)


debbiR
Veteran Member


Date Joined Feb 2005
Total Posts : 730
   Posted 6/30/2005 7:21 PM (GMT -7)   

Hello Kat! I am so sorry to hear about your diagnosis but so very glad that you found us and had the courage to post. You have been given lots of good advice from several of our members and I know that more will post and share their stories also. As for not remembering what the surgeon told you, that is very normal. The only thing that I remembered was hearing the words "you have breast cancer." Frightening. I cried, screamed, sat in silence, drove around alot, ask "why me"?. Ran the whole gambet of emotions. You have to allow yourself to feel. Don't be afraid to be angry and sad. That is all part of your healing.

Get yourself a 3 ring binder and paper. Divide it up into sections...ex: tests and dates and results...questions....treatment plan...drs appts...etc. This will help you keep everything in one place. Please write down all of the questions that you want answered. I even kept a tablet and paper beside my bed because during the night was when I would really have time to "think". When you go for your next appt, take those questions w/ you. Have a copy for your surgeon and then whomever you take w/ you have them write down the answers on your copy. Also, if you have a small tape recorder, as someone else suggested, take it with you.

Don't be afraid to get a second opinion. It is always a good idea. And if you don't feel 100% comfortable w/ your surgeon and/ or oncologist, then interview until you find one that you like. You will be working w/ these drs for the next year and prob off and on for the rest of your life (checkups, etc) so it is important that you really like them.

I can't add much more to what has already been said about chemo. Yes, you will lose your hair but we can all promise you that it will grow back. Being bald is NOT the worst thing in the world. I had a modified radical mastectomy w/ 19 of 21 lymph nodes positive. I had 4 treatments of the A/C followed by 12 weeks of taxol and 36 radiation treatments. Hey, I survived. I wasn't really sick. Tired. I never did end up in the hospital during chemo. So, don't be to frightened.

We are all here to help you on this journey. Please continue to post and ask your questions.

Love and hugs...Deb from Missouri



 


babyseeester
Veteran Member


Date Joined Oct 2004
Total Posts : 826
   Posted 6/30/2005 8:54 PM (GMT -7)   
Welcome to a great place for support and information.  I am sorry you have to be here.  The ladies have given you some great advise.  I remember all too well what you are feeling right now.  I was diagnosed last Sep. at the age of 44.  My tumor was 6cm and I ended up needing a mastectomy, followed by chemo and now radiation.  It is doable, even though right now it seems overwhelming.  These ladies helped me so much and I know they will help you, too.  Please ask anything. 
 
I had chemo for 5 months, every 3 weeks.  My hair didn't all fall out, but it got to a point that I just shaved it and wore a wig.  I just stopped wearing the wig about 3-4 weeks ago.  My best advise is to learn all you can and as has been said, take someone with you.  I went to most of my appts alone, only because DH had to work and couldn't take the time off. 
 
The lesson I've learned throughout this entire ordeal is how strong I am.  I also learned that I have a wonderful circle of friends and co-workers who really care.  You will have this too.  Don't be afraid to ask for help.  You need to concentrate on yourself right now, not others.
 
Take care and just take one step at a time.
L & H,
Kathy


Skky
Regular Member


Date Joined Mar 2005
Total Posts : 146
   Posted 7/1/2005 6:48 AM (GMT -7)   
Hi Katt-Im sorry you had to join us.I know the fear your feeling right now, as it has only been a little over three months since my diagnosis. I had no family history, and have never know anyone with breast cancer. The women on this board gave me the strength to move forward in those first few weeks. This a great place for information,and support.
I have had 4 AC-and just started to do 4 rounds of taxol. This will have taken four months. I pretty much lost most of my hair(just left with some fuzz.)I bought a nice wig, and I promise noone can tell.Everyone responds to chemo differently. I found it exhausting, but tolerable.The fear of the unknowns has been worse than the actual treatments so far. I cried on the day of surgery, and then the first day of chemo.After they were done -I just felt so relieved that they were not as bad as I expected.
Try to write your questions down on paper as they come to you. My mind just shut down after diagnosis, and I would have been lost without my tape recorder.I would come home and listen to those tapes when I was emoitionally ready too.
This a great place to ask questions. I have gotten great advice and ansewers from these women.
Hugs,
Michelle
"There are two ways to live your life. One is though nothing is a miracle. The other is as though everything is a miracle."     -Albert Einstein


ardee
Veteran Member


Date Joined Sep 2003
Total Posts : 854
   Posted 7/1/2005 1:54 PM (GMT -7)   
Hi Katt,

I'm not going to repeat my story, which is very similar to most here. I just wanted to welcome you and let you know we'll help you through this. It's definitely doable.

Hugs,
Rita


Kattbird
Regular Member


Date Joined Jun 2005
Total Posts : 243
   Posted 7/1/2005 2:45 PM (GMT -7)   

Thanks for all your kind words. I wish I didnt have to be here ( no offense to anyone :-) ) I went to (don't know what kind of doc to call her) Oncologist I guess. It's where they do the radiation, anyway, it seems I got more info from her than I did the surgeon, or I just don't remember what the surgeon said. Anyway, I may have 2-3 choices as far as radiation goes, mastectomy, the normal radiation for 5 days a week for a few weeks, or (and I don't know the terminology for this) where they put a cathedar (spelling?) in your boob and you got to the office every morning and evening for 1 week only. It's called MammoSite I think. They insert a balloon inside your boob and you stop in the morning and get hooked up to a machine and it sends a "seed" as she put it, and it delivers the radiation from the inside right ot the spot. I'm all for that one. But mine will depend on when I have surgery again as to how much if any more cancer is left in there. I think she said if they get .1cm more of cancer I may not be a candidate for that procedure which will probably be my luck.

My mother doesn't know yet, she is out of the country and will be back next Saturday. She is going to be so upset. She worries about me so much as it is. I'm the only person she has here. I have a boyfriend I live with. He's kind of strange when it comes to things like this. I don't think he really knows how to comfort people in times like this. I just kind of overlook it. I know he cares and will do what he can.

Thanks again. I'm going to the beach for the holiday. I won't be back until the 5th and will check back then and read other people's posts and the experiences. Some of you have mentioned some words/abbreviations that I don't understand yet, but I'm sure I will eventually.

Have a nice holiday! :-)


skeeter1
Regular Member


Date Joined Jun 2005
Total Posts : 97
   Posted 7/7/2005 7:56 AM (GMT -7)   

Hi Kitt, I just joined this forum too and going thru radiation right now... I was wondering what you were talking about when you said they wanted to put a wire in you. It makes sense to me.. but what do I know.... I found some information on it. Here it is:

Brachytherapy (also called internal radiation) is an experimental method currently being developed to use on breast cancer patients. Instead of using radiation beams from outside the body, radioactive substances are placed directly into the breast tissue next to the cancer. Brachytherapy involves the surgical placement of 10 to 20 plastic catheters (tiny tubes called implants) into the breast tissue next to the tumor to help guide the radioactive materials to the correct area of the body. Technologists then insert pellets of radioactive substances (called Iridium-192) into the catheters. Nine or more times over the course of a week, the catheters are briefly connected to a high-dose-rate brachytherapy machine for internal radiation treatment. The treatments usually take about 10 minutes each and are painless. The tubes are usually removed after a week.

Brachytherapy is not standard practice for breast cancer patients but is currently used on cancers in other areas of the body such as the mouth, cervix, or prostate.

Possible advantages of brachytherapy:

  • The reduction of time a patient has to undergo radiation therapy from at least six weeks to one week.
  • Less irritation of healthy breast tissues.
  • Patients who must also undergo chemotherapy as part of their breast cancer treatment do not have to delay treatment for as much time.
  • Fewer skin reactions, such as redness, rashes, or irritations

Physicians are unsure whether brachytherapy is as effective in destroying breast cancer cells as external beam radiation therapy. Several clinical trials are currently being run to evaluate the safety and effectiveness of brachytherapy. Side effects of brachytherapy include risk of infection and breast swelling

Skeeter1


Kattbird
Regular Member


Date Joined Jun 2005
Total Posts : 243
   Posted 7/7/2005 2:36 PM (GMT -7)   
I went back to the surgeon's offcie today and I remebered the name of the radiation after you said it Skeeter. She said that it now has a permanent code (insurance purposes?) because it is a successful treatment. I go back for surgery again on the 27th to make sure there is no more cancer there and also to do a sentinal node biopsy. I'm a good candidate for the Brachytherapy but they won't know for sure until the slice me open again. This is all taking so long since I 1st found the lump. I would much rather do the Brachytherapy. It will be less expensive on my wallet. For the traditional radiation I have to pay a copayment each time I go ($25 each visit,5 dyas a week for 6 weeks I think). I will be in the poorhouse by the time they would finish! All of this is stressing me out between getting referrals from my primary care, calling the ins co to make sure this and that is covered to having to tell my mom when she comes back on Saturday and my job!

gma
Veteran Member


Date Joined Jul 2003
Total Posts : 2921
   Posted 7/8/2005 6:12 PM (GMT -7)   
You really have to pay $25 each radiation treatment? I have not had radiation but this sounds steep to me. How about those who have had it, did you pay a co pay each treatment? Maybe Katt needs a little help here????? Hugs MK


Kattbird
Regular Member


Date Joined Jun 2005
Total Posts : 243
   Posted 7/9/2005 4:34 AM (GMT -7)   
My surgeon didn't think I should have to either, so I called my ins co again tomake sure and told them it's like part of the package. That I would not actually be seeing the doctor each time and they said yes I have to pay the co pay each time. That's why I'm more interested in doing the Brachytherapy. I got a copy of my Pathology report, I guess my cancer type is "carcinoma"?? They call it a garden variety type which is supposed to be a better cancer?? In my opnion, no cancer is good.
Anyone here who has gone thru chemo and has had the hair loss, did you lose any body hair too? Eyebrows, arm hair, eyelashes etc..? I have been so stressed this week between all this info, trying to get referrals from my primary care doc's office, my job and having to tell my mom (who comes back today) that my period is later than last month. No, I'm not pregnant. I had my tubes tied years ago. Wish me luck with my mom today. She is going to be devastated. She's going to think just like I did when I heard the word cancer, "death sentence". I called the American Cancer Society and they are sending me some stuff on different things and also had the names of some wig shops in my area. Yes, I am more worried about my hair than anything else, and that this is going to interfere with my vacation in Spetember.
Thanks again for everyone's help/support and hugs to everyone here.

Post Edited (Kattbird) : 7/9/2005 5:37:42 AM (GMT-6)


JUJU8872
Regular Member


Date Joined Jun 2005
Total Posts : 349
   Posted 7/9/2005 6:40 AM (GMT -7)   

Kattbird, all I have to say is with 4 AC and 12 Placitaxel, the answer is yes to all the above hair questions and twice to head, eyebrows and eyelashes. Everyone is different but just try to get prepared. Get a great wig, and caps for winter sleeping.

 

JUJU


gma
Veteran Member


Date Joined Jul 2003
Total Posts : 2921
   Posted 7/9/2005 7:43 AM (GMT -7)   
Katt I would not give up on that co pay with one phone call. What insurance company are you with? How about getting your oncologist to write a letter to them and get this presented to an advisory board or an advocacy board. This is ridiculous. So far no one else has replied to my question above about having to pay a co pay. We need to find a consensus of opinion here.

Hair loss will be frightening and devastating at first possibly, but it seems that those who experience it feel better with it in time. I did not do chemo but my daughter did and from a mother's view it was very difficult for me to see her for the first few times. Not because she looked terrible but because I was hurting for her having to deal with hair loss. So I understand how you are concerned about telling your mother. My daughter's diagnosis was much harder on me than my own. That is when I found the internet system of support. It was a real Godsend to me.

I, too, hated the word cancer and when I was diagnosed all I wanted was to be rid of it. So anxious to be rid of it I told the surgeon to do the mastectomy immediately if he found cancer. Hindsight tells me I would have been better off doing a lumpectomy because my cancer was not anywhere near advanced nor aggressive. I got into trouble with further surgeries for reconstruction which I would not have needed had I had a lumpectomy. But hindsight is always better. And my problems were rare and had nothing to do with cancer. No one else has experienced them. Now I am not so afraid of the word cancer. We have some women here who have survived for 20 years. I have known others who survived a lot longer. My grand daughter's other grandmother has been a survivor for over 40 years. So breast cancer is not always terminal by any means.

Hugs MK

Hugs MK


Cathi
Veteran Member


Date Joined Jul 2003
Total Posts : 702
   Posted 7/9/2005 8:02 AM (GMT -7)   
Hi Kat

First off, sorry you have to be here, but welcome to our board. This is a frighteneing
time for you, with so much happening. Just know we will be here for you.

I have never known anyone to pay a copay for each radiation visit....I would surely argue that one
if you go the traditional route for radiation.

When I went thru my 1st round of chemo I didnt wear a wig, I wore baseball caps. I found they
were much more comfortable and cooler than a wig. This time I am going without anything (except
if I am in the sun.) It doenst bother me being bald. Although the 1st time around I was
devastated at the thought of being bald....you really do get used to it.

Please stay with us and keep us posted...

Cathi
Sometimes it is a slender thread, Sometimes a strong,
stout rope; She clings to one end, I the other;
She calls it friendship; I call it hope....


JUJU8872
Regular Member


Date Joined Jun 2005
Total Posts : 349
   Posted 7/9/2005 9:21 AM (GMT -7)   

And I thouight I had a difficult insurance company. I did not have a co-pay for the chemo nor will I have for radiation, but my dr's office asked me to call to see if I did. Maybe you can appeal this. I have had to do that a couple of times and I have been successful. Also, if you have your insurance booklet, read it. I have found that that has helped.

Also about the hair, look at it this way, I have not had to shave my legs in six months!!!!!

 

JUJU


Kattbird
Regular Member


Date Joined Jun 2005
Total Posts : 243
   Posted 7/9/2005 11:13 AM (GMT -7)   
I have an HMO and maybe that's why? Maybe I will call again this week. I'm just getting so stressed with msking all these calls.

debbiR
Veteran Member


Date Joined Feb 2005
Total Posts : 730
   Posted 7/9/2005 11:51 AM (GMT -7)   

Hi Katt! Ok, take a deep breath and try and relax. I know how much stress you are under right now but try and relax if possible. First, I can remember how difficult it was for me to tell my mother. Harder than it was for me to tell my 2 dds. But, the one thing that you and your mom both must remember is that the word "cancer" is NOT a death sentence. There are so many new treatments. Most of the newly approved treatments many of us had been in clinical trials to help prove or disprove that the treatments worked. So, keep you head high and your attitude positive.

As for the copay for the radiation. I didn't have any copay but I am on straight medicaid. I didn't have insurance at the time of my diagnosis. I would suggest that you contact the social worker at your oncologist or surgeon's office. If there isn't one there, then try the hospital social worker. Tell them your problem and that you cannot afford $125 a week in copay. I know that there are companies and or hospitals that provide chemo at no charge for individuals that can't afford it. Perhaps there is a radiation clinic that is connected w/ a teaching hospital that can do the same thing. But please talk w/ a social worker. They are there to help. Don't settle for a treatment just because of the cost. There are ways to get around everything. And trust me, w/ all of us here, we will find a way to help you. I am really surprised that your pp, surgeon, radiation onco or onco offices aren't helping you w/ this. Let them earn their pay! yeah

I also lost all of the hair on my body (and I mean all of it---no hair anywhere..if you know what I mean) It is great for not having to shave! Contact your local American Cancer Soc and ask them for the next "Look Good/Feel Good" (think that is what it is called) class is. You will get lots of great hints for makeup, etc and lots of free goodies.

Keep a journal of your feelings. It helps w/ the healing and also is great therapy. You will be amazed in a year when you go back and read what you had written.

Good luck telling your mom. Know that we are all w/ you.

Hugs...Deb


 


Kattbird
Regular Member


Date Joined Jun 2005
Total Posts : 243
   Posted 7/10/2005 4:54 AM (GMT -7)   

Well, I picked mom up yesterday evening rom the airport. She started to unpack as soon as we got there. I didn't want to say anything while she was bent over in her suitcases in case she fainted or something and fell over in them ! tongue   When I did finally tell her, she took it much better than I expected. Unless she cried after I left sad   I told her I found the lump before she left and didn't want to tell her. She said she wouldn't have gone and I told her I know she wouldn't and that's why I didn't tell her. I think the fact that I told her it is a common cancer may have made her feel a little better. She said she would help me in anyway she could, even financially. My mother is such a giving person. Then she kind of got mad and said, you won't quit smoking and then that tanning. Yes, I go to a tanning salon. So I'm just a perfect candidate for all kinds of cancer at this point. sad   I told her, those things don't necessarily cause breast cancer. Maybe not even at all. She doesn't drive (I may have mentioned that before) so it will be hard for her to be with me. Hoepfully once all these treatments start that I won't be too affected that I need anyone's help.

Thanks again ladies for your hugs and things. :-)


babyseeester
Veteran Member


Date Joined Oct 2004
Total Posts : 826
   Posted 7/10/2005 11:00 AM (GMT -7)   
Hi Katt!  Welcome, but sorry you have to be here.  I unfortunately did not lose my leg hair!  I did lose most, but not all, of my eyelashes and eyebrows.  I didn't really lose all of my head hair either, but shaved it off so the wig would be more comfortable.  It depends a lot on what drugs they give you for chemo.  I have not paid any co-pays for either chemo or rads and I have an HMO.  I would really fight that.  That is one reason I chose the HMO instead of PPO (my insurance changed mid-treatment), because it said that chemo and rads were covered 100%.  My insurance is Blue Cross. 
 
This is a great place for information and support.  I'm so glad you found us.
L & H,
Kathy


Kattbird
Regular Member


Date Joined Jun 2005
Total Posts : 243
   Posted 7/10/2005 11:36 AM (GMT -7)   
Maybe I'll call the Oncologist's office and see what they knew thru their experience. Another question.. did anyone's period get lighter or go away while on chemo. I was going to have this procedure done before all this happened where they burn the lining of your uterus so you don't bleed real heavy. My surgeon said a lot of women's periods will lighten or stop for a while when doing chemo.
Thanks

babyseeester
Veteran Member


Date Joined Oct 2004
Total Posts : 826
   Posted 7/10/2005 12:50 PM (GMT -7)   
My period stopped just after my 2nd chemo.  It hasn't shown any signs of returning yet.  I'm 45, by the way.  I finished my chemo in Apr and am currently finishing my rads.  Then on to Tamoxifen.  I've read from these ladies that sometimes it comes back and sometimes it doesn't.  Everyone is different.
L & H,
Kathy


Kattbird
Regular Member


Date Joined Jun 2005
Total Posts : 243
   Posted 7/10/2005 2:30 PM (GMT -7)   
I'm 47. I would be glad to be rid of mine. I have to figure out these terminologies you all use. What is Rads? I know the Tamoxifen is a drug, but not sure when I will be taking it, or if I will. I haven't finished my book of 100 Questions & Answers about breast cancer.

babyseeester
Veteran Member


Date Joined Oct 2004
Total Posts : 826
   Posted 7/10/2005 4:17 PM (GMT -7)   
Rads means radiation.  I remember when I first joined that it was hard to catch on to the terminology used here.  You will get it soon. 
L & H,
Kathy

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