<p>This week I received a diagnosis of breast cancer. Does anyone have any advice on how to handle upcoming treatment, recovery etc.? I don’t yet know what type of surgery or treatment I will be receiving, as I have just started seeing the doctors. </p>
<p>Some questions: Did you have a choice between lumpectomy and mastectomy and are you happy with your decision? Did you do reconstruction? What was your life like during chemo? Could you drive? How soon after did you feel well enough to go back to work etc.? Effect on children, both at home and away at school?</p>
<p>MB66, I just want to say how sorry I am that you have this diagnosis. You are asking the right questions. Good luck in finding the right answers, and getting through the upcoming weeks of decision-making and treatment.</p>
<p>I am so sorry. Everything must seem like your in a crazy house tunnel or a nightmare. So many of your choices depend on the diagnosis of the stage of breast cancer. I had a lumpectomy. Chemo is very challenging. And the effect it has on your kids is determined by their temperment, ages, sensitivity and where they are in life. </p>
<p>Chemo can have long term effects, but it varies from person to person.</p>
<p>I am so sorry. I was one of the lucky ones with a DCIS diagnosis, but unlucky in that I needed a mastectomy - no chemo. I had the mastectomy and reconstruction in one surgery. A few months later, I went back and had a reduction in the remaining breast. Mentally, I just wanted to get it over with and get on with my life. Four years later, I have almost forgotten about it. I sometimes need to think about which one is “real” and which one is not. I still see a doctor every six months. Other than that, I do nothing extra. My husband was an absolute gem (as he always is). He took his cues from me and really did react and support me just the way I wanted him to. I would suggest getting a binder and keeping everything together. Try to write up notes as soon after appointments as you can, so you don’t forget anything. Good luck and my prayers are with you.</p>
<p>I don’t have any personal experience with breast cancer, MB66, but I want you to know I’m sending prayers and good vibes your way. You can always find great support here on CC. Thinking of you!</p>
<p>Thank you everyone for your support! This is a wonderful, caring community. </p>
<p>I actually have another screen name that I usually use. I’m in the junior member range, with about 125 posts, and a lot more lurking. In the future, when I’m past all this I will use my real screen name to comment about this experience for others, but since it is all so new I felt more comfortable using this other name today.</p>
<p>MB66- totally understand your desire for even greater anonymity.
If you would like, come back when you know more about the stage of your condition (if you want to share). This group can probably be even more helpful. Ages and stages of your children will help us advise, too.</p>
<p>In the meantime and in general: do you have a level-headed friend (or friends) who can go to appointments with you to ask questions and take notes? I think this can be very helpful in a stressful situation. </p>
<p>Do you have any friends who are health-care professionals who can help you make your way through research? This may not be your way, which is fine! But I overcompensate with research and information, so it would be helpful to me. (I already know which poor unsuspecting nurse-friend I would call.)</p>
<p>If you do not have those personal resources, a binder and a recorder can do wonders!</p>
<p>You may be accustomed to being the fixer and the healer in your family. You may find it difficult to relinquish these roles. I would. But you may be doing your family a service if you can allow them to tend to you. Loving and doing can be a blessing and a kindness to those who are allowed in.</p>
<p>Very sorry about the diagnosis. I was the friend who went with my Stage 2, triple negative best buddy to all of the appointments and treatments. That was 4 years ago, and we still look at my notes, so really, do bring a friend, even if you have a spouse along with you. We are the gallows humor sort, so we had “fun with the cancer” by catering chemo, picking out garish wigs, and shaving patterns into her hair in advance of its loss – she claims it helped. Best wishes to you and your family.</p>
<p>My best friend was dignosed with stage 3 bc 19 months ago. She went as agressive as possible. Chemo, radiation, year of herceptin, and masectomy. I hope u have a friend who can sit with u thru this. Hugs</p>
<p>Sorry to hear. When my wife had it (a very aggressive form), we found it necessary for both of us to go to all appointments, at least at the beginning. We would write down all our questions in advance, and I was responsible for making sure they all got asked and answered. The doctors got used to my coming in with the steno pad. And then we would write everything down - and almost always found later that there was at least one thing we didn’t understand.</p>
<p>We also found that we had to keep the health insurance company honest. The very first words after the diagnosis from the doctor was “which insurance”? There were clearly treatments he could authorize with some insurers and not with others, and some which he had to prep his staff to go do battle with the insurers. We had excellent insurance, and the treatment we used was the standard of care in Europe for 25 years, but here, some insurers decided to call it “experimental” (and would only pay for a form of treatment that had an 11% higher relapse rate, and a 10% higher mortality rate). First, the disease insults you, then the insurance company. It required both of us to stay on top of it.</p>
<p>Our close friend used a cancer support website to create a place where family and friends could go to sign up to help with a specific task, like “take Cassie to soccer game”. So many people wanted to help, but were unsure what was needed. Having a centralized place to coordinate made it easy for people to be helpful. She said they got an avalanche of food, but it was the assistance with keeping the kids’ lives as normal as possible that really made a difference.</p>
<p>I have kids in college and high school. They are the type who don’t express a lot of emotion, so it may be hard to gauge how they are reacting.</p>
<p>I have had many kind offers from people to help. And while traditionally I have found it difficult to accept help, I’m going to try really hard to take people up on their kind offers. I realize that this is not only difficult for me and my family, but it is difficult for friends and neighbors, and allowing them to help is helping them deal with it as well. </p>
<p>My husband is a great resource at the doctors’ appointments. And for support, I have a friend who went through this a number of years ago. I am also going to take along a notebook to take notes, since I probably won’t remember half of what is said. Information overload!</p>
<p>Being able to do useful things made us feel like we were part of the team.
My MIL also found the support group at the hospital to be really helpful while she was in the middle of treatment. I’m hoping that there are good resources either at your treating hospital or in your community.</p>
<p>Well, I don’t have any personal experience either, so I can’t have any guidance to offer. BUT, I can offer prayers and thoughts of healing and support. Hoping that your journey takes what you do not need (the cancer) and brings you something you do need - in whatever form that arrives.</p>
<p>Many blessings to you and to your family. Keep us updated and we will continue to support you in your healing.</p>
<p>Both my mother and sister-in-law are going through this right now and my husband studies breast cancer. (But at a basic level with mice.) There aren’t simple answers to your questions. Some cancers are more invasive than others. For my mother not having to drive an hour every day for six weeks, and no longer having a husband seemed a good reason to get a mastectomy. While my sister-in-law is going for a lumpectomy since statistics for her type of cancer seem to indicated that prognosis is just as good as the mastectomy. Good luck. Ask your doctor questions until you are convinced you understand and have some there to help ask questions and/or bring in a tape recorder. At one point both my brother and I talked to the surgeon and even with two of us listening we still weren’t 100% sure what he’d told us at the time.</p>
<p>Breastcancer.org is very highly thought of for information such as you are asking. It was started by a woman physician, and supported by all types of specialty experts including nurses, physical therapists, and physicians.</p>
<p>Additionally, it has a very popular anonymous (or not) “discussion forum” which welcomes warmly women with new diagnosis.</p>
<p>I wish you comfort through your journey and will keep you close in thought.
GHWM</p>