Can't make a decision

ladys229

I am new here. I had been having 'worrysome' mammograms since November, tests.... and a biopsy this month (June). It came back positive for invasive ductal carcinoma, 1.1 centimeters, nuclear grade 2. I think it's stage 1, I don't know if lymph nodes are involved or not, and I THINK I will find out after surgery?? My choices are lumpectomy or mastectomy. I chose mastectomy with reconstruction, but now I'm second guessing my decision. If I do lumpectomy, and my breast changes shape, can it be reconstructed? Or is insurance only going to pay for reconstruction if I have a mastectomy? Is mastectomy too aggressive? Would lumpectomy be just as effective? Would I have to go thru chemo and/or radiation after lumpectomy? After mastectomy? Is mastectomy going to hurt real bad? I'm 47, premenopausal. I think the surgeon said something about hormone therapy... is that only if I have a mastectomy? Or is that realistic with either surgery? What are the hot flashes like? I read about weight gain? Why do you gain weight after mastectomy?

I have a gazillion questions. My doctor wanted me to think about it over night and make a decision... and that was a week ago. I have to decide. I'm scared it's growing in there and spreading. BUT WHAT DO I DO?

cabbott

You have great questions and this is a great place to ask them. The right surgery is the one that helps you sleep at night. If the spot is in one place (I had the spotty kind that showed up in more than one place), then the standard of care is lumpectomy followed by radiation. The survival rate is actually slightly better for that than mastectomy alone and the recovery is MUCH faster. I know. I had a lumpectomy + biopsy that showed cancer in two spots so then I had the mastectomy. With a lumpectomy the surgical spots could be covered by bandaids and I went for a mile walk the next day. With a mastectomy I had to have general anesthesia and it took a week before I was ready to walk around outside on my own. Reconstruction is more surgery and how much recovery it takes depends on what you have done. Most plastic surgeons are artists that continue to see you till you are satisfied with the end result. Insurance pays, but you want to check with them BEFORE any surgery so that you know exactly what they will and won't cover (days in the hospital, private or 2 bed, office checks, where you can go for treatment...). Radiation means you will be tied up for several weeks going for your treatment, but I understand it is not so bad. One of the teachers at my school had radiation and chemo throughout the year and missed only 2 days of work the entire year. Other folks need the year off. The chemo and radiation are determined after your final surgery and the decision is based on the size of the tumor, the aggressiveness of the tumor based on markers the pathologist checks, and whether the lymph nodes are involved or not. While the cancer is being removed, the surgeon also samples the lymph nodes. Standard of care I think is a sentinal lymph node operation where only one to three nodes are removed, however, not all surgeons are trained to do this operation. The old standby is to remove all the first level lymph nodes (like 10 to 20. Um, more is not better but missing cancer is not good either. If they don't have lots of these operations under their belt, you can go elsewhere or do the old stand-by. If cancer shows up in the sentinel node, you have to have more nodes out to adequately stage the cancer and see how aggressive it is. Either way, you need to take extremely good care of the involved arm for the rest of your life so that you avoid lymphedema (swelling of the arm). I had the mastectomy and the sentinel lymph node operation as day surgery and could reach over my head by the second day. I did not have reconstruction though. I had heard there would be pain, but it was more like a sore muscle than a toothache. Folks who have had reconstruction tell me they woke up feeling like they had been hit by a truck (they had the DIEP flap or tram flap kind). They did not need a prothesis and I do. The right decision there is up to you. If the lumpectomy shows dirty margins, you have to do it again (fairly common), but you can usually get it right without losing your breast. I was small and had cancer in 2 spots. I didn't have a choice. So which choice is right for you? I would do the one that helps you sleep better at night. Just know that more tissue removed does not equal less chance of cancer. It will reduce immediate reoccurance if a spot was not showing up on the mammogram. However, local reoccurances are not the same as Stage 4 cancer. If they happen, a mastectomy can be done (or a lumpectomy if you are built large enough). Radiation can only be done once. I was premenapausal when this happened to me. Tamoxifen is the standard of care if you still have periods. You can take more effective hormone pills (Arimidex, exemestane and others) once you are menapausal. Hot flashes keep your feet warm in the winter when you have to run to the bathroom. I dress for warm weather and wear layers that are easy to take off. Tamoxifen gave me an initial headache for two days that Tylenol stopped cold and a few hot flashes, nothing bad. I lost weight after starting an exercise program and got serious about eating right. I gain weight everytime I eat till I'm totally full and then eat dessert. I tried blaming the drugs, but Tamoxifen is used by weight lifters to cut their body fat (quite illegally!) so my doctor refused to let me blame that. Watching my calorie count surprised me. Those extra cookies I "needed" really packed on the pounds, as did the extra helpings of veggies that I thought would keep away the beast. I think that hit all your questions, but you are sure to have more. Your surgery should be within a month of diagnosis, so think about what will work for you. There is no one way that is right for everyone. Choose what works for you.

seof

ladys,
Your fear and confusion is normal. All survivors have the same feelings. Now, relax a little. Cancer does grow, but usually not that fast...there is time to think and breathe. Trust your Doctor, but ask questions. Each of the questions you have mentioned would probably have a different answer for each survivor, depending on our individual circumstances. Each of us is unique, and the Doctor is the best first source of information. Write down all of you questions and take them with you when you go back. If you can take someone you trust with you, it would be even better. It is a stressful situation and two heads are often better than one. My husband goes with me when he can to help make sure we get all our questions answered, even after months of treatments and surgery. As far as what insurance will pay for, you will have to talk to your own company to see what they will or will not cover, but they may not be able to give you an answer until you and the Dr. have narrowed down the options. A book I got that helped me is "my cancer journey"...look on the American Cancer Society Website under their bookstore menu. You might also see if you can get in touch with your local branch of the American Cancer Society to find a support group of ladies who have been there/done that, maybe even someone to go with to the Dr. This site is also a good source of info and support.

You are in our prayers, seof

sylva

So many questions when we get the positive results and diagnosis. I got the diagnosis on 3/13/08, on 03/21/08 I had the mastectomy and in a month I started with the chemo. I didn't want to wait longer once I knew the diagnosis.
But each case is different, and what works for one person may not work for the other.
As you were told already, it's better to go with another person to the doctor's appointment, take a list with all your questions and take your time, don't feel rush to leave the office.
Previous to my surgery, I went to the surgeon and oncologist, and they answered many many questions.
Didn't you think about a second opinion? I personally didn't want to wait longer, and didn't go for the second opionion. Now sometimes I think what other surgeon would have done. My surgeon chose to remove 18 lymph nodes (thanks God all negative), but others choose to remove only the Sentinel node and one or two nodes (the more nodes they remove, they higher the risk for lymphedema). But then I remind me that I made the best decision I was able to do in that moment and I won't have any regret about it.
This is scary, but we have to fight and go through and win the battle!! I wish you the best.

mmontero38

Hi Lady: Sorry to have to welcome you to the site as it means you are also a survivor, but here you will find a GREAT group of women who will help you in anyway we can and give you our experiences so that you can make a more informed decision. I also had DCIS and had 8 nodes removed. Thankfully, they tested negative but, because they found traces in my blood I had to go the chemo route. I didn't have to do radiation because I chose to have a mastectomy. In my case I feel I made the right decision because it gave me peace of mind. Only you can make the decision that you will be comfortable with. I had my mastectomy on 6/7/07 and waited to do my reconstruction until 2/4/08. I was 48 when diagnosed and was sooo scared that I wanted everything done asap. You do have time to think things through. Cancer is not that fast spreading that you can't wait a few weeks until you are comfortable with your decision. I can say that the mastectomy did not hurt me that much. I was uncomfortable for a few days and very sensitive in that area for about 8 weeks and then I was good. I did 8 rounds of adriamycin and cytoxan. I went on Fridays every 3 weeks and was able to continue working. I didn't have to do radiation so once I was done with chemo which was 11/16/07 i was DONE. I am now on Tamoxifen for the next 5 years. You do get hot flashes but they are bearable. And to tell you the truth, even if they weren't there is nothing we can do about it if you are estrogen positive, so you learn to adopt and live with it. I usually keep ice water near me and when I feel it starting to build up I take a couple of sips and it helps. I also carry a spanish fan in my bag like the flamenco dancers and if I'm out get a flash I just fan myself. Whatever you choose to do has to be a decision you will feel comfortable with. If you test estrogen positive you will be on an estrogen blocker such as tamoxifen whether you do a lumpectomy or mastectomy. Take someone with you when you go back to the surgeon. If you miss something the other person will be able to review what the dr said to you again. Also, write down any questions you may have between now and your next appt so that you don't forget when you go back. Good luck to you in whatever decision you make and keep us posted. Hugs, Lili

ladys229

mmontero38 said:

Hi Lady: Sorry to have to welcome you to the site as it means you are also a survivor, but here you will find a GREAT group of women who will help you in anyway we can and give you our experiences so that you can make a more informed decision. I also had DCIS and had 8 nodes removed. Thankfully, they tested negative but, because they found traces in my blood I had to go the chemo route. I didn't have to do radiation because I chose to have a mastectomy. In my case I feel I made the right decision because it gave me peace of mind. Only you can make the decision that you will be comfortable with. I had my mastectomy on 6/7/07 and waited to do my reconstruction until 2/4/08. I was 48 when diagnosed and was sooo scared that I wanted everything done asap. You do have time to think things through. Cancer is not that fast spreading that you can't wait a few weeks until you are comfortable with your decision. I can say that the mastectomy did not hurt me that much. I was uncomfortable for a few days and very sensitive in that area for about 8 weeks and then I was good. I did 8 rounds of adriamycin and cytoxan. I went on Fridays every 3 weeks and was able to continue working. I didn't have to do radiation so once I was done with chemo which was 11/16/07 i was DONE. I am now on Tamoxifen for the next 5 years. You do get hot flashes but they are bearable. And to tell you the truth, even if they weren't there is nothing we can do about it if you are estrogen positive, so you learn to adopt and live with it. I usually keep ice water near me and when I feel it starting to build up I take a couple of sips and it helps. I also carry a spanish fan in my bag like the flamenco dancers and if I'm out get a flash I just fan myself. Whatever you choose to do has to be a decision you will feel comfortable with. If you test estrogen positive you will be on an estrogen blocker such as tamoxifen whether you do a lumpectomy or mastectomy. Take someone with you when you go back to the surgeon. If you miss something the other person will be able to review what the dr said to you again. Also, write down any questions you may have between now and your next appt so that you don't forget when you go back. Good luck to you in whatever decision you make and keep us posted. Hugs, Lili

Thank you for all the posts. I really appreciate the feed-back. I had an appt to consult with the plastic surgeon today about the reconstruction and he won't do it at the same time as the mastectomy because I am a smoker. I have been taking Chantix to help me quit for a week now and I will do it, I know I don't have a choice anymore, this is a real eye opener. My husband and I did schedule the mastectomy this morning, so I guess my decision is made. Surgery will be on Thursday, and reconstruction will be in a few months. I'm pretty scared. I just keep telling myself this is the way it is, gotta do it, and then get through it. But whoa, what a roller coaster. Can't believe this is happening to me, still waiting for someone to pinch me or say April Fool's or SOMETHING.