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
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!
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:
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
Post Edited (Kattbird) : 7/9/2005 5:37:42 AM (GMT-6)
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.
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!!!!!
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.
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 ! When I did finally tell her, she took it much better than I expected. Unless she cried after I left 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. 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.