Drastic measures
Raynie06-06-2003, 06:30 PMI'm wondering if a double masectomy as a preventative for someone with breast cancer in their family is acceptable. I know insurance would say no way, but will a doctor do it? Does anybody get this done?klayr06-06-2003, 06:57 PMHow old are you? Are you the one considering such a drastic measure? How close is the person that has the cancer? Do you have or plan to have children? There are so many questions that you need to address. Just because someone has breast cancer doesn't automatically condemn every other female family member to it. I would love to talk with you about this before you decide. To answer your question, yes, doctors do it. Insurance probably wouldn't cover it, but it's a very serious decision. Won't you please respond, and let me know what your frame of mind is? Sometimes just talking to other people can help. It seems like you might be worried, and that is not necessarily the time to make a life-altering decision.
KlayrRaynie06-06-2003, 07:55 PMHi, yes i'm asking for myself. I'm 31 and i know for sure that i don't want to have children. (I may adopt an older child later)I have not had a momogram yet because my gyno said i still have too much muscle to be able to see anything. My great Grandmother had it on my mom's side, Grandmother on Father's side, maybe my great Grandmother on his side also, and my mom has had it twice '88 & '94. She has had a single mastectomy.
Now my mom is getting something biopsied that is in her liver. The oncologist said that if it is cancer, there is a good chance that it was from the breast cancer cells moving through the blood system and settling in the liver rather than it being a liver cancer or cancer resurfacing from the cancer she had in her leg in 2000. I know of a woman who just recently got a tumor removed from her breast and 6 months later it came back in the other breast. Not only is there a chance that it comes back in the breasts, but it my come back in the bones or liver.
I feel doomed. I wonder if more women would have this done if it weren't for the fact that **** insurance companies will cover the least possible option and certainly not reconstruction if the mastectomy was "not necessary". I saw a news program where a woman had this done as a precaution and she was labled as being radical. Isn't my life is worth being radicl? If it was my leg or something, that's a different story, but i don't need my breasts and i feel the risk is too great. This isn't something i just thought of because my Mother is having more problems, i have been thinking about this for a long time. Thank you kindly for responding.klayr06-06-2003, 11:56 PMHow old was your mom when she was diagnosed? It sounds as if she has really been through it. I'm so sorry that she's suffered all of this -- and you, too. Most people forget that we suffer when we watch a loved one going through something so devastating. Have you discussed this with a plastic surgeon? You would want to go to a really good one, because it can be a real nightmare if you have problems. Also, with all of the diagnostic tools that are available now, maybe you wouldn't have a problem at all. Are you married? Have you discussed it with a partner? How does your mother feel about it? And, by the way, how is she feeling? You're obviously not a baby, and if you're sure that you want to do it, then there's no stopping you. But the old proverb still holds true: If it ain't broke, don't fix it. Surgery comes with a whole world of other possible complications.Kalie06-09-2003, 04:02 PMHi there,
My advice is do not undergo a double mastectomy unless you actually have cancer. Find a good doctor and talk it over with her. I was diagnosed with breast cancer last year (25 yo) and had a single mastectomy. Breast reconstruction is not easy, and it is not fast. There are many steps: first a saline tissue expander (like a balloon) is inserted beneath the pectoralis to stretch the skin so that it is elastic enough to accept the implant. The tissue expander must be inflated weekly, sometimes more. This means weekly visits to a plastic surgeon. The tissue expander is quite uncomfortable and sometimes painful.
On top of that, breast reconstruction is NOT a perfect reconstruction of a natural breast. If you are expecting your new breasts to look exactly like your natrual breasts, go talk to a plastic surgeon and ask to see pictures of reconstructions.
I understand your fear -- as a breast cancer survivor really I do. Please do as much research as possible before you take such a drastic step. You may also want to consider gene testing. There are 3 genes linked to breast cancer BRCA1, BRCA2, and one more that I can't remember right now. Often, you can get into a clinical trial and the gene testing is free, and they don't even contact your insurance company.
Please think it through! Cheers!
[This message has been edited by Kalie (edited 06-10-2003).]klayr06-09-2003, 05:42 PMDully,
I agree with Kalie 100% about not having unnecessary surgery. There are way too many variables, and you may never need it all. The only thing I would caution about having gene testing is this: if any insurance companies do find out about it, you will be uninsurable if the results are not good. Make sure that if you go that route, there is absolute confidentiality. Get it in writing.
KlayrKalie06-10-2003, 08:08 AMGood point klayr. I was accepted into a clinical trial for genetic testing and the hospital running the study gave me everything in writing. They paid for the test, and kept the results confidential. After I was enrolled, my name wasn't even used. I was assigned a code number that was associated with my demographics (age, race, gender, etc) for the researchers. No one other than the researcher who interviewed me ever knew my name. My insurance company doesn't know the test ever happened.
Oh, something I forgot to mention in my earlier post...my reconstruction went exactly as planned and it took 3 months. Some women don't respond as well to the tissue expansion, so you could be looking at 4 months of expansion. The initial mastectomy is really rough -- you'll have drains inserted into your armpits to allow the fluid to drain. It's quite uncomfortable.
After the breasts are reconstructed, you wait another 3 months and go back for nipple reconstruction. The nipple is created from a skin graft -- usually taken from the inside of your groin. The new nipple doesn't have any sensation at all. The skin of the breast itself doesn't regain all sensation.
Raynie, are you sure you want to go through all this if you don't have cancer?amphigory06-10-2003, 11:29 AMJust wanted to reiterate that you should look into genetic testing before you consider major surgery. I'd try to talk to a genetic counselor if you can see one - I'm afraid I don't know if this is covered by insurance. A genetic counselor can get you set up for testing as well as advising you on your options.
A note: recent studies have shown that removal of the ovaries can significantly reduce the risk of breast cancer in BRCA1 and BRCA2 positive women. Just another something to think about. However, I agree with all of the previous posters in that I think you should discuss this with your doctor and give it a lot of thought before committing to surgery.klayr06-10-2003, 04:29 PMI had an 11-hour reconstruction at the time of my mastectomy. They used both abdominal muscles to rebuild the breast. Needless to say, I had major recovery time, not to mention, a pulmonary embolism that nearly killed me. Some surgeries are no problem, but why would you want to take the risk, when you don't know for sure that you will ever develop a disease that has a high cure rate if you stay on top of it? The hardest part for any woman is the not knowing, but you can't live your everyday life wondering about the what-ifs. Enjoy what you've got while you've got it. Everybody suffers in some way. You're young enough to do the screenings and still enjoy all there is in between.Raynie06-12-2003, 11:13 AMThanks for all the replies and info. Reconstruction is more involved than i thought. My mom has a custom bra with a formed saline blob in it to give her form. That's an option too. I have looked into genetic counseling. My mom's oncologist says there are only 2 in the Chicagoland area and she will get their phone numbers for me. I realize that only 10% of breast cancer is genetic, so i would definately get this done first to gage my risk factor.
Thanks again and by the way. My mom's first biopsy of her liver came out clean. What they saw in her cat scans were lesions associated with a type of scerosis from taking prescription drugs all her life. They took a second biopsy of the other lobe of the liver just to make sure. We should have the results to that one tomorrow.klayr06-12-2003, 03:53 PMRaynie, you sound much better. I'm glad that your mom just had a scare. Hopefully, the rest of the results will be as good. Good luck with the genetic testing, if you do it. It might help to put your mind at ease. In the meantime, make sure you're trying to do the things the American Cancer Society says will help cut down your risk factors.ellekay06-16-2003, 01:38 AMi think your being very foolish in thinking the way u are. whatever is written 4 u will happen and breast cancer may not!
dont put yourself through that **** if u dont need to. let be what will be and hope for the best, dont think the worst.
KlayrRaynie06-06-2003, 07:55 PMHi, yes i'm asking for myself. I'm 31 and i know for sure that i don't want to have children. (I may adopt an older child later)I have not had a momogram yet because my gyno said i still have too much muscle to be able to see anything. My great Grandmother had it on my mom's side, Grandmother on Father's side, maybe my great Grandmother on his side also, and my mom has had it twice '88 & '94. She has had a single mastectomy.
Now my mom is getting something biopsied that is in her liver. The oncologist said that if it is cancer, there is a good chance that it was from the breast cancer cells moving through the blood system and settling in the liver rather than it being a liver cancer or cancer resurfacing from the cancer she had in her leg in 2000. I know of a woman who just recently got a tumor removed from her breast and 6 months later it came back in the other breast. Not only is there a chance that it comes back in the breasts, but it my come back in the bones or liver.
I feel doomed. I wonder if more women would have this done if it weren't for the fact that **** insurance companies will cover the least possible option and certainly not reconstruction if the mastectomy was "not necessary". I saw a news program where a woman had this done as a precaution and she was labled as being radical. Isn't my life is worth being radicl? If it was my leg or something, that's a different story, but i don't need my breasts and i feel the risk is too great. This isn't something i just thought of because my Mother is having more problems, i have been thinking about this for a long time. Thank you kindly for responding.klayr06-06-2003, 11:56 PMHow old was your mom when she was diagnosed? It sounds as if she has really been through it. I'm so sorry that she's suffered all of this -- and you, too. Most people forget that we suffer when we watch a loved one going through something so devastating. Have you discussed this with a plastic surgeon? You would want to go to a really good one, because it can be a real nightmare if you have problems. Also, with all of the diagnostic tools that are available now, maybe you wouldn't have a problem at all. Are you married? Have you discussed it with a partner? How does your mother feel about it? And, by the way, how is she feeling? You're obviously not a baby, and if you're sure that you want to do it, then there's no stopping you. But the old proverb still holds true: If it ain't broke, don't fix it. Surgery comes with a whole world of other possible complications.Kalie06-09-2003, 04:02 PMHi there,
My advice is do not undergo a double mastectomy unless you actually have cancer. Find a good doctor and talk it over with her. I was diagnosed with breast cancer last year (25 yo) and had a single mastectomy. Breast reconstruction is not easy, and it is not fast. There are many steps: first a saline tissue expander (like a balloon) is inserted beneath the pectoralis to stretch the skin so that it is elastic enough to accept the implant. The tissue expander must be inflated weekly, sometimes more. This means weekly visits to a plastic surgeon. The tissue expander is quite uncomfortable and sometimes painful.
On top of that, breast reconstruction is NOT a perfect reconstruction of a natural breast. If you are expecting your new breasts to look exactly like your natrual breasts, go talk to a plastic surgeon and ask to see pictures of reconstructions.
I understand your fear -- as a breast cancer survivor really I do. Please do as much research as possible before you take such a drastic step. You may also want to consider gene testing. There are 3 genes linked to breast cancer BRCA1, BRCA2, and one more that I can't remember right now. Often, you can get into a clinical trial and the gene testing is free, and they don't even contact your insurance company.
Please think it through! Cheers!
[This message has been edited by Kalie (edited 06-10-2003).]klayr06-09-2003, 05:42 PMDully,
I agree with Kalie 100% about not having unnecessary surgery. There are way too many variables, and you may never need it all. The only thing I would caution about having gene testing is this: if any insurance companies do find out about it, you will be uninsurable if the results are not good. Make sure that if you go that route, there is absolute confidentiality. Get it in writing.
KlayrKalie06-10-2003, 08:08 AMGood point klayr. I was accepted into a clinical trial for genetic testing and the hospital running the study gave me everything in writing. They paid for the test, and kept the results confidential. After I was enrolled, my name wasn't even used. I was assigned a code number that was associated with my demographics (age, race, gender, etc) for the researchers. No one other than the researcher who interviewed me ever knew my name. My insurance company doesn't know the test ever happened.
Oh, something I forgot to mention in my earlier post...my reconstruction went exactly as planned and it took 3 months. Some women don't respond as well to the tissue expansion, so you could be looking at 4 months of expansion. The initial mastectomy is really rough -- you'll have drains inserted into your armpits to allow the fluid to drain. It's quite uncomfortable.
After the breasts are reconstructed, you wait another 3 months and go back for nipple reconstruction. The nipple is created from a skin graft -- usually taken from the inside of your groin. The new nipple doesn't have any sensation at all. The skin of the breast itself doesn't regain all sensation.
Raynie, are you sure you want to go through all this if you don't have cancer?amphigory06-10-2003, 11:29 AMJust wanted to reiterate that you should look into genetic testing before you consider major surgery. I'd try to talk to a genetic counselor if you can see one - I'm afraid I don't know if this is covered by insurance. A genetic counselor can get you set up for testing as well as advising you on your options.
A note: recent studies have shown that removal of the ovaries can significantly reduce the risk of breast cancer in BRCA1 and BRCA2 positive women. Just another something to think about. However, I agree with all of the previous posters in that I think you should discuss this with your doctor and give it a lot of thought before committing to surgery.klayr06-10-2003, 04:29 PMI had an 11-hour reconstruction at the time of my mastectomy. They used both abdominal muscles to rebuild the breast. Needless to say, I had major recovery time, not to mention, a pulmonary embolism that nearly killed me. Some surgeries are no problem, but why would you want to take the risk, when you don't know for sure that you will ever develop a disease that has a high cure rate if you stay on top of it? The hardest part for any woman is the not knowing, but you can't live your everyday life wondering about the what-ifs. Enjoy what you've got while you've got it. Everybody suffers in some way. You're young enough to do the screenings and still enjoy all there is in between.Raynie06-12-2003, 11:13 AMThanks for all the replies and info. Reconstruction is more involved than i thought. My mom has a custom bra with a formed saline blob in it to give her form. That's an option too. I have looked into genetic counseling. My mom's oncologist says there are only 2 in the Chicagoland area and she will get their phone numbers for me. I realize that only 10% of breast cancer is genetic, so i would definately get this done first to gage my risk factor.
Thanks again and by the way. My mom's first biopsy of her liver came out clean. What they saw in her cat scans were lesions associated with a type of scerosis from taking prescription drugs all her life. They took a second biopsy of the other lobe of the liver just to make sure. We should have the results to that one tomorrow.klayr06-12-2003, 03:53 PMRaynie, you sound much better. I'm glad that your mom just had a scare. Hopefully, the rest of the results will be as good. Good luck with the genetic testing, if you do it. It might help to put your mind at ease. In the meantime, make sure you're trying to do the things the American Cancer Society says will help cut down your risk factors.ellekay06-16-2003, 01:38 AMi think your being very foolish in thinking the way u are. whatever is written 4 u will happen and breast cancer may not!
dont put yourself through that **** if u dont need to. let be what will be and hope for the best, dont think the worst.