Confused

Sorry to hear that you recently joined our family - I only had a lumpectomy and am ER & PR negative so I can't give you any advice on those particulars but I can tell you that being in shock is defintely normal. When I was diagnosed I didn't even cry - all I could do was what the docs were telling me at that time. I didn't think to check around for a 2nd opinion, shop docs or even gather more info - It was ultrasound & biopsy on a Friday, diagnosis that Monday and surgery less than a week later. Didn't even have time to "think about it" Just went with the flow of things. After surgery and during recovery I started to read a bit of the box of materials they gave me. It was information overload, I was exhausted by it all and at the same time still in shock that this was happening to me. Was it real? Just be careful of all the info out there - It can be really confusing and everyone you speak to has their own ideas and advice, everyone's a doctor, right? It's good that you are searching for answers - I hope & pray that you find the correct information for your diagnosis. My thoughts are with you! Kitty

The only other thing I would suggest that really helped me with information is to join a support group - I didn't go to a meeting until aprox. 5 or 6 months after this all started and now I can't imagine missing a meeting. I only go once a month but it sure helps a lot to talk to other women who have actually gone through it, even more helpful than talking to doctors. You find out what is normal, what to expect and so on first hand! Good luck!!!

Being diagnosed with cancer is a shock to everyone who experiences it. I was first diagnosed in August of 2002 and I still remember the days of pure terror that followed. Nothing that bad happened (well, I too had a mastectomy and lots of doctor visits!) but I was so very scared for what seemed like days on end. It took talking to lots of survivors and educating myself about my particular kind of cancer before I began to relax enough to sleep through the night and get through the days without crying. Stage one is great news! The oncologist will base what medicines you need to beat this beast on the pathology report. He will look at the size of the tumor, how aggressive it appeared under the microscope, what kinds of cells it contained, whether it is estrogen negative or positive, whether it is HER2Neu positive or not, and whether the nodes were infected with cancer or not, among other things. You already know you are stage one with negative nodes and that you are estrogen positive. These are great indicators. Depending on the size of the tumor and its aggressiveness, you may only need tamoxifen (if you are pre-menopausal) or something like exemestane or the like (if you have ceased having periods). Yes, these drugs will probably give you hot flashes and a few aches and pains, but for most folks they aren't that bad. I've been on both that I mentioned. Morning stiffness that lasts a few minutes when I get up and regular hot flashes have been the worst problems I've had. (I wait for the hot flashes to get out of bed so I don't get cold feet!)Tamoxifen lowered my cholestrerol level, so it wasn't all bad and of course it was supposed to lower my chance of reoccurance by 50%. I haven't had chemo, but several of my friends have. They had more troublesome side effects, but nothing that couldn't be managed. Chemo was strong medicine for a serious problem. One of the teachers at my school managed Friday chemo sessions every few weeks during the school year and only missed two days the entire year. Yes, she napped on the weekend, but that was a small price to pay for good health in the long run. So don't be overwhelmed at the side effects of the cancer meds. The oncologist has to tell you about them, but when he does, realize the worst problems occur infrequently and there are ways to treat problems when they occur. Having nurses and doctors you feel comfortable talking to will help a lot. I'll be thinking of you. Good luck!

As for the swelling, show it to the oncologist. I had a fair amount of puffiness which eventually resolved on its own. The surgeon said that he could drain it in the office if it was significant. He preferred not to drain it if it could resolve on its own because of the possibility of infection. After about a month it did seem better. I was not to get fitted for a mastectomy bra and prosthesis until the surgeon okayed things about a month after surgery. I could wear a batting-filled "pillow" that fit into a very soft mastectomy bra they gave me on the day of surgery, so my clothes fit okay. I recall thinking then that the mastectomy bras were too tight, but now I'm used to them.

IT is normal not to be seeing oncologist for this time period since nothing can be done till you have healed more. Your fortunate to have had surgery so quickly but treatment fase is a bit of wait since healing is important before breaking down immune system.
I am 10 year IDC breast cancer stage 3 survivor with 11 out of 21 positive nodes yet negative for hormone. I think it is important to realize that swelling will be a bit of problem since the surgery was so evasive. If swelling continues you may need to have area drained again and if bothering you I wouldn't hesitate to go see someone.
I think mastectomies limit the cells left so that we minimize our risk factors for a reoccurance. Depending on your age also would determine this as well. I was 36 at time of diagnosis and type of cancer very aggressive which seems to be case with younger women, unless caught early enough. I myself took any treatments offered since I was fighting this disease I wanted every percentage possible for my survival. I decided if I was going to fight this I would fight with all my might and do whatever I could to minimize my risks for occurances.
Being good to yourselves is sometimes the best that we can do.
Tara

carmon said:

Hey upbeat, i was diagnosed on 10/20/06; had mastectomy on 11/9/06, at stage 2 because the tumor was over 2 cm long but lymph nodes are fine, have had 2 of 4 chemos and I still have swelling. I asked my doctor about it and she said its muscle spams. In cutting the lymph nodes a nerve was cut. The body has to re-wire that nerve so the feelings can come back. Sometimes it takes the body longer to do this than we would want. I have found it helps not to wear anything on that arm, no jewelry, watches nothing. Stretching exercises will help but I have been so blah from the chemo that I havent been able to get started yet. Also, my surgeon said hot pulsing showers and massaging the area with cocoa butter will help as well but I havent tried the massages yet. I cant bring myself to look at my scar yet. The hot shower does help. While under the shower try moving your arm around. Are you still wearing that uncomfortable bra from the hospital? If you are, take it off. Get you a good exercise bra but make sure its not too tight. Also, dont sit, stand or lay in the same position too long. Its important to move around even if its just going from one room to another. You are probably going to have to go through chemo. My doctor tells me the treatment depends on several factors including age, stage, have you been through menopause yet. I had the same thoughts too about the invasive treatment. We can refuse treatment but I have spent the last 18 years not having a life to raise my daughter as a single parent. I'll be damned if I am going to be robbed of my chance to enjoy live by anybody or any thing. I hope this info helps and please let me know how you make out. Carmon1961

Have they changed the recommendations for avoiding lymphedema (arm swelling after a lymph node operation)? Even though I just had a sentinal node operation with the breast operation, the surgeon and nurses warned me to avoid showers hot enough to make the skin turn pink (my favorite kind) because it attracts lymph fluid and may cause swelling. Long soaks in hot tubs were also off limits. There is a long list of other things to avoid, but I wonder if I can go back to hot showers safely or not. What's the research say?

List your questions 1 by 1 and let us see how we can help you.