Cancer Survivors Network

I am new to this site and am from Canada.I would like a chat or an email from anyone interested in talking.

I'm in Vancouver. It's been nearly a year since my diagnosis. I have a modified radical mastectomy, followed by 6 months of chemo then 3 weeks of radiation. I'm now on Tamoxafin. I'm going for my first big check up next week. Any suggestions as to what questions I should ask?

Hi, my name is Denise and we seem to be at the same place in treatment. I go for my big check-up in two weeks. I don't know what questions you should ask but if you would to stay in contact e-mail me back.
Denise

Hi Denise, Thanks for your response. I had 1 node positive - how about you? I am very anxious
about recurrence - what to look for, etc. Also, the side effects of Tamoxafin. Yikes, it's scary!
Apart from the worries (!), I'm doing fine and feel quite well, back working full-time etc.
I have two teenage daughters, 17 and 19. My husband has been my rock through all this s--t.
I'd hate to do it alone, as I know many women do and my heart goes out to them. Tell me more
about your experiences.

Hi Everyone!

I will try to remember my questions and tell you a little about my experiences.

Be sure to ask how long you will be on tamoxiphen and ask what side effects to expect. Also ask what can be done for the side effects. Ask about the benefits of tamoxiphen and about risk reduction of recurrence. You might ask about alternatives to tamoxiphen such as reloxaphene (sp?) and the recent studies that have been done on both.

My experience on it (1 1/2 years) has been positive. Oh, the hot flashes were the pits at first, but are considerably better now. If you have not gone into menopause with the chemotherapy, you may with the tamoxiphen. There are things that can be given for hot flashes, medicines, soy, black cohosh, vitamin E, but ask your doctor about risks and benefits of each. I take a soy capsule and 800mg of Vitamin E. There are mixed opinions about this, but it has made the hot flashes tolerable. Mine initially felt like I was about to have a panic attack and then I got hot and sweaty on face and back. It lasted from 2 to 5 minutes and happened several times a day and night. Night was the worst because it woke me up. I didn't get much sleep for a while, but the Vitamin E and soy has helped a lot. The medicines didn't help me, but they might help you.

I have heard some people retain water and gain weight, but I am not sure if these are because of the tamoxiphen or not. I have found that getting really involved with an exercise program has helped me tremendously both mentally and physically. I have gotten much stronger again and have kept my weight at a reasonable level after being sedentary for much too long! It has really helped in the self-esteen department too. I joined a small fitness center with personal trainers where I get a lot of help with particular physical problems like upper body weakness from the operation and working around my arthritis. That came on after the chemotherapy which I also understand often happens. I have both rheumatoid and osteoarthritis even tho' I am only 50 years old. I don't want to act older than I am, and this makes a remarkable difference!

Best wishes to you both. Your friend,

Louise

Thanks for the upbeat message, Louise. Glad to hear you're doing well. I hadn't heard about
the possible link to arthritis with Tamoxafin (something else to look out for!). I've been using
blackcurrant oil for hot flushes, and it works well for me (evening primrose oil did zilch). It was
recommended by a naturopathic doctor I'm seeing. Best wishes to all. Carol

I'd didn't mean to imply the tamoxifen was related to arthritis, but chemotherapy sometimes starts the arthritis process soon and perhaps more severe symptoms. Just wanted to correct any missimpression. Your friend,

Louise

Louise,
How are they treating your rheumatoid and osteoarthritis. I seem to have devoloped pain in the joints of the hand that received the chemo. Did you get Adriamyacin, Cytoxan, and Taxol? It has been two yrs since chemo. Also do you get muscle pulls more frequently than before treatment? I noticed that whenever they try to find a vein in me to draw blood or start an IV they say my veins blow up as the chemo made them more brittle. My last visit I finally gave them my other hand after 6 tries, which you are not supposed to do so as to avoid lymphodema, but does anyone have the same problem? Margaret

Soy is in the news as being controversial now. They are now saying not to eat things with soy in them. Who do we believe?

Sorry it took me so long to get back to you. I didn't have any +nodes but I had my other breast removed. I have a sister who 3 years ago had the same thing and the DR.s told me my chance of getting it again were really high. I'm about 1/2 way through with the reconstruction. My husband has been a rock too. What would we do without them? I have a friend who went through this and she thinks her husband really let her down. Now that she finished with the chemo part, she has many bad feelings toward him. I have one son, Michael he is 20. He was out of the country during all my treatments. He's home now.
My hair came back in real curly, how about yours? I still don't have very much eyebrows or lashes. How are you doing? I have some trouble mentally, worry that kind of thing. My year check up is on the 17, did you go to yours yet? How did it go? Glad to talk with someone with the same s--t going on. Take care
Denise

i was one node postive also. Please contact me. Like to share our stories.

Hi Carol, First I am hopeing that the "first Big Check-up" was positive or is that negative in this case? Either way I hope it was good news. I am scheduled for a modified mastectomy in the next couple of weeks. Any advise? McGruff

i was diagnosed just 8 weeks ago. Please contact me. want to share stories.

I'm new too - just logged on for the first time. I was diagnosed in late July and have another lumpectomy on Wed. of next week. Have begun Tamoxifen and begin radiation in Oct. Sometimes I feel like I'm acting in a drama - it just doesn't seem real. Have you felt that way?

You bet I have felt like "all of this is unreal." I truly couldn't believe it was real for months. Unfortunately my ordeal went on long after the chemo was over, but hopefully it won't for you. Someday you'll hit the acceptance mode and it will be somewhat relieving. I don't even think about recurrences anymore. I have had so many MRI's and bone scans that I am reasonably certain that I don't have cancer now. However, I am going to all of my checkups, which are only once every 6 months now. It does get better.

Your friend,

Louise

Hi ellen:
I'm also new to the site and to beast cancer. Why are you having another Lumpectomy. Did you have one and now found another lump?? Please explain.
I haven't started any treatment yet, so I'm so
new to all of this.
Let me know how your feeling?
Vinnie

Hi Vinnie, The path report following the first lumpectomy showed one margin still positive despite the fact we were sure the surgeon had excised 1 cm around the entire leison. (Frozen sections while you are on the table are not highly reliable with DCIS, I'm told.) So, we had to go back and take more tissue on the inferior margin. This time it came back clean. Sure did cause more pain the second time. A week later I still have more than I ever had with the first one. Everyone says it's because we went back through the same incision into the same area and just plain disturbed the healing process that had begun after the first lumpectomy. Generally, I feel great. I sleep well at night but do still tire easily during the day. I had planned a week's vacation this week anyway so went ahead and took it. My husband and I are just hanging out as our grandson says. I have my simulation for radiation treatment on Sept. 28 and begin radiation on Oct. 9. Hang in there and get all the info and ask all the questions you can. My husband is a cancer survivor and we learned early on that you have to be in charge of your treatment and care, be knowledgeable and ask when you don't know or understand. For example, I have copies of all my path reports that I take with me to appointments so I can follow along and ask when I don't understand. Just a thought. Ellen

Hi Ellen:
Sorry to hear that you had to go thru it again, but you sound as tho your doing well mentally, and that's a plus. Great that you and hubby are just hanging. Sometimes I love that much more than going away. (Quality time, I call it.
Anyway, thanks for responding, enjoy your week off and keep in touch. Let me know how your feeling. Question: Why radiation and not chemo. Only because I'm not sure of the difference yet.
vinnie

Vinnie, I've been checking back through the chats tonight and found your question about why radiation and not chemo. I'm like you, going in circles with this Re:..... thing! and to top it all offf, the site doesn't put things in any kind of order. Oldest to newest would sure help, wouldn't it! But I love your sense of humor. Keep it coming. Anyway. If I didn't answer, I'm on "the pill" -- tamoxifen which is considered chemo but not the really hard stuff that makes one sick or lose hair. Tamoxifen is used now as a preventative too, I understand, by women who are at very high risk of developing cancer because of family members having it. The radiation is to zap any strays that might be in the same breast but far removed from the original site. I've been emailing with Nancy Sims for a week or so now. I have also set up a personal web page with a picture of my husband and me. I'm 64 - employed as a minister and have four kids and 9 grandchildren.

Hi Ellen:
I think last time I spoke to you, you and hubby were just going to veg for the week. Hope it was a good chance for you to just relax and spend quality time. Ellen, your very lucky to just have to take tamoxifen, but how do you feel on it. Any side effects? I've been chatting with Nancy also. I love being able to use e-mail to feel so close to so many women who understand, who've been there or are about to enter this scary road. The support and compassion that I'm
receiving is a natural HIGH, I go thru my day anxious to get home and check my e-mail, or the discussion list. It's just great. And its especially great having friends like you and Nancy just a click away. Your in my prayers, God Bless, I'l speak to you soon.
vinnie

Hi Vinnie,
Thanks for the good words. We did just that "veg" and was it great. Visited some nearby friends but otherwise recouped. Everyone has been great as you say. I still marvel at the number of cards that come in the mail from all over the country (from our former parishes) telling us they have heard and are praying for us. What wonderful support God gives us through family and friends. Regarding tamoxifen: I have not had even one hot flash! And that is a flash, because so many people told me they would be terrible. I had a hysterectomy in 92 and had been on premarin ever since and had tolerated it so well with no hot flashes that I was really worried about that minor detail! (See, I still have trouble equating my DCIS with those of you who have had more invasive cancers!) Anyway, I haven't gained weight, I haven't been nausated or anything. Dizzy -- but that's just me -- a dizzy broad! Been feeling doggone good! My son, the nurse, sent me an email today saying one of his nursing journals had mentioned putting aloe on the breast before and after radiation to reduce or eliminate the radiation burn. Do you have any knowledge of that? I'm going to ask my nurse next time I see her. So long for now. Hubby says he's going to head for the sleepy time place, and it sounds like a good idea to me, too.
Ellen.

Hi, I sure feel like a day time soap opera so I
do understand how you feel. Good luck!!

hi, my name is susan, and i just had a partial mastectomy and axillary dissection six days ago. lobualr carcinoma. no path report from surgery yet. can anybody tell me whe i can expect these incisions to heal, and for my arm to feel fairly normal again?

Hi Lene:
I am also new to this site and I am new to breast cancer. I am also looking to chat with others who are going thru or have gone thru treatment. If you'd like to chat or know of any other sites available, please let me know.
Thanks
Vinnie

Your right, there is HOPE and it is curable. I have been there, surgery in July of 1999 and chemo from Aug 1999 till Jan 2000 and enjoying life to the fullest. Stay positive and I wish you all the best. Martha

i am 46, diagnosed eight weeks ago. Like to hear from you.

I had a mastectomy 8/5/03. They tried twice for clear margins but never got them. The surgery was not that bad not much pain at all. The healing process takes awhile > It has been 1 month today and It is uncomfortable. The skin is tightening up. I have a port put in Thursday and start chemo Next Tuesday. I am dreading that more than anything but I have to do it for peace of mine that I have done what I can to keep it from returning . I am not a candidate for Tamoxifen because my was er and pr negative .Wish you the best of luck .I just turned 65
Betty

Hello Louise
I am MaryBeth, and new here, trying to find my way around this site.
I am 49 and a seven year survivor of BC

MaryBeth! Just wondered if you noticed the posts you were responding to are dated 2000, 2003 and 1in 2007. If the website you're looking for isn't there, it's because those were old posts. Hope you find what you're looking for. HUGS!! Cathy

thank you for letting me know, I am trying to find my way around this site.

Hello Cruf
I go into Discussion boards and then, all I see is chatroom blogs. There is something I am doing wrong. any Idea

Arg don't click on discussion boards. There is a line that says chat room click on that.

Hello MMontero

I keep trying to get into a chat. Where is the chat room subject supposed to be located?

ARg, you need to have Java on your computer for the chat room to work. Download Java, and then after you sign in click where it says chat room and you will get in.

Hello, I will try that chat room

TY