Newbie here

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. 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.

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

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

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

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!

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!

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)

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

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

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!

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

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.

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.

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.