Can I ask some Questions?
Sorry for the barage of questions but heck, you all have been through so much and really seem to know of what you speak. So why not ask the people who actually went through it?
Oh and Sloan said the appt with this Dr. H. Cody will take about 4! hours. I guess it's to re-read all the path and look at all the old films and sono's. My sis in law's step mom had a class one or two stage and she elected a mast, good thing because they found ANOTHER cancer in that breast too!
Just how safe are we if we have all breast tissue removed? And how bad is reconstruction? Sloan will not do it right then and there, one must heal for a number of months and that will be difficult for me (the messing with my head business) but I'd rather be alive for a long long time than to be vain and gone......Also how long is surgery? My jaw surgeries went anywhere from 4 to 10 hours so I'm used to that, not that it's a picnic. Oh yeah and once they do a mastectomy and if they find the sentinel node and it's clear does that mean they won't take any other nodes? I'm praying.
Thank you in advance and I've been reading your stories. I am in awe of all of you!!!!!!!
Love and Hugs,
Susan
Comments
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All good questions Susan, fair warning you'll get varying opinions and some questions can't be answered because it's up to what doc you see.
I had a lumpectomy in my small town with 27 lymph nodes removed, 13 were positive. I found my lump on a Sat, mammo on Tues, surgery on Thurs, that was 6/00. Whether or not they keep you for surgery is up to you and doc. Yes, to mastectomy, I think, seems to me you've always got the option to do more. Will insurance pay for other side? I don't know. I think they almost always recommend chemo, but usually no radiation with mastectomy. Treatment can be ordered by Sloan and done by your MD/hospital without a doubt.
From what I've read studies show lumpectomies are equally as curable as mastectomies. However, if you have a family history of breast cancer or you have the BRC1 or 2 gene for breast cancer I think then they do recommend mastectomy. Lumpectomy recovery was a little tough, getting range of motion back, but sounds like a cake walk to the mastectomy, particularly those with reconstructive surgery. That's just the impression I get from others as I can't say firsthand. I'm sure you'll get lots of input. We are sort of like mother hens and newcomers are out little chicks! The ladies here make this a very loving, supportive and helpful site.
As for chances of spread elsewhere, that depends on your stage, health, response to treatment and I think attitude. The more positive the better. So keep asking questions, but don't worry yourself sick. God bless you sweetie! hummingbyrd0 -
Dear Susan,
You asked for input. I think it is a mistake to go far from your area in hope of getting better treatment. You have Winship cancer Institute of Emory University in Atlanta. Now if you were in the boondocks somewhere, that would be different and you do not say where you are, but Atlanta has to be closer than New York City. You can have good surgery in your own state. If you have a bilateral mastectomy you will have four drains and no arms odf good use to you. You won't be staying in the hospital more than a night - maybe two - then do they have facilities for patients etc.to stay in the area? Will your insurance cover out of state?
If you can have radiation and chemo in your area, then the facilities have to be of sufficient quality to follow Sloan Kettering's protocol.
Ask some more questions since I've raised a few here.
Part of your four hours with this Dr. cody may be waiting to see him. Sorry if I sound cynical - just realistic and I've been through all the steps earlier in 2001.
Hummingbyrd lives three hours from M.D. Anderson but she had her surgery etc. in her area.
You can always cancel those appointments, you know. As they say - but don't advertise it- you can cancel surgery until they start the cutting!
Wishing you wise decisions,
Jean0 -
People come from all over the planet to obtain treatment at Sloan Kettering. It is regarded as an excellent choice internationally. Since Sloan has a large volume of patients coming from all parts of the globe, they will be the best at figuring out how to navigate your timetable for surgery and treatment options. I had a modified radical mastectomy of the right breast and elected to have simple mastectomy of what was thought to be the unaffected breast. Pathology found small spots of cancer in the latter, so I was very happy with my choice to have it removed. I had eight cycles of chemotherapy following surgery and am now receiving radiation to the right side. Since the left side had microscopic spots, radiation was not thought to be necessary for the left side. One of my friends with a different type of cancer goes to Sloan, but had chemotherapy and radiation at a local hospital. I am not certain whether her surgery was at Sloan or at the local hospital. My surgery was under 4 hours. I did not have reconstruction so cannot help with questions in regard to that. Please do yourself a giant favor and write all of your questions down on a list to bring to your doctor at Sloan. Hope this has helped. Love, Denise0
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Hello, Susan. hummingbird's statement about varied advice is true. Everyone's situation is different, even if you are the same Stage.
The Drs will be considerate about your travel arrangements, but the speed of the whole ordeal depends on test results and the Stage and Grade of the cancer.
For me, I had DCIS in one breast. I elected for both breast to be removed. The Dr would only agree to remove the non-affected breast if I did a few things: convince him that I had researched Breast Cancer thoroughly, discussed all the options with him and then an oncologist, and had breast MRIs. I did them all and still held fast to my decision. The isurance did not cover the elected breast, even though I had several large cysts. (They would have paid for the cysts removal, but not the whole breast. gofigure!) Anyway, I am two years out and am still happy with my decision. I did not want to worry about the second breast and wanted symetry. If I ever change my mind about reconstruction, I can still have that surgery.
I had the sentinel node removed on the cancer side. Since the node was clear, they did not have to remove others. The radioactive stuff/dye is injected into the breast. It spreads from the breast to the nodes under the arm .. the same path the cancer would take. If the cancer has spread, it would be in that first node. If it is not there, there is no reason to take further nodes.
How safe are you?... No one will ever give you the answer you want to hear. My cancer never left the milk ducts. So you could deduce that since I had all the ducts removed, I should be cancer free. As "law suit happy" this world has become, no doctor or cancer association is ever going to tell me I am 100% cured....only 98%! I chose to lose both breasts for those odds. That decision is not for everyone. Everyone's situation/life style/mental state is different. And I thank God for those researchers who have given us the choices we have today! In my Grandmother's time, there were no choices. Mastectomies were even done for fibrocystic breasts back then. I still have annual mammograms. Side views - to check the tissue under my arms and to be sure no tiny part of the breast tissue was left behind.
2% or 30% etc. chance of reoccurrance ... you can not let the fear overtake your life! Research, research, research! Coming to this site is a great start. Talk to the Drs. Write down all the facts about your cancer/test results. Write down all your options. Gather all the advice you can. Just remember, YOU have the final word! Make your decision and go forward. Don't look back.
As for Sloan, that , too, is a personal decision. Every woman on this site could give you excellent reasons why you should go to her particular surgeon. You have to have faith and conviction in your choice of hospitals, Drs, treatment & treatment facilities. You could go to Sloan for their opinion and/or surgery and/or treatment.
I highly recommend going to support group meetings after your surgery.
One final thing before I get off my soapbox. Go to www.curetoday.com and read their featured articles. CURE is a magazine about cancers. It is free to all cancer patients. This month they have a Special Issue devoted only to Breast Cancer.
Keep us posted...
Wishing you the best,
Maryh0 -
One of options you have not mentioned is Chemo first then surgery. Here in CA the Chemo Dr's that I spoke with are doing Chemo first to reduce the size of the tumors and then re scanning after chemo is done. This allows the tumors to shrink (meaning less tissue loss) and it gives you time to really think about your surgical options.I think a lot of time the Dr's do not allow us time to really make an informed decision. Good Luck!0
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THANK YOU ALL SO MUCH!!!!maryh said:Hello, Susan. hummingbird's statement about varied advice is true. Everyone's situation is different, even if you are the same Stage.
The Drs will be considerate about your travel arrangements, but the speed of the whole ordeal depends on test results and the Stage and Grade of the cancer.
For me, I had DCIS in one breast. I elected for both breast to be removed. The Dr would only agree to remove the non-affected breast if I did a few things: convince him that I had researched Breast Cancer thoroughly, discussed all the options with him and then an oncologist, and had breast MRIs. I did them all and still held fast to my decision. The isurance did not cover the elected breast, even though I had several large cysts. (They would have paid for the cysts removal, but not the whole breast. gofigure!) Anyway, I am two years out and am still happy with my decision. I did not want to worry about the second breast and wanted symetry. If I ever change my mind about reconstruction, I can still have that surgery.
I had the sentinel node removed on the cancer side. Since the node was clear, they did not have to remove others. The radioactive stuff/dye is injected into the breast. It spreads from the breast to the nodes under the arm .. the same path the cancer would take. If the cancer has spread, it would be in that first node. If it is not there, there is no reason to take further nodes.
How safe are you?... No one will ever give you the answer you want to hear. My cancer never left the milk ducts. So you could deduce that since I had all the ducts removed, I should be cancer free. As "law suit happy" this world has become, no doctor or cancer association is ever going to tell me I am 100% cured....only 98%! I chose to lose both breasts for those odds. That decision is not for everyone. Everyone's situation/life style/mental state is different. And I thank God for those researchers who have given us the choices we have today! In my Grandmother's time, there were no choices. Mastectomies were even done for fibrocystic breasts back then. I still have annual mammograms. Side views - to check the tissue under my arms and to be sure no tiny part of the breast tissue was left behind.
2% or 30% etc. chance of reoccurrance ... you can not let the fear overtake your life! Research, research, research! Coming to this site is a great start. Talk to the Drs. Write down all the facts about your cancer/test results. Write down all your options. Gather all the advice you can. Just remember, YOU have the final word! Make your decision and go forward. Don't look back.
As for Sloan, that , too, is a personal decision. Every woman on this site could give you excellent reasons why you should go to her particular surgeon. You have to have faith and conviction in your choice of hospitals, Drs, treatment & treatment facilities. You could go to Sloan for their opinion and/or surgery and/or treatment.
I highly recommend going to support group meetings after your surgery.
One final thing before I get off my soapbox. Go to www.curetoday.com and read their featured articles. CURE is a magazine about cancers. It is free to all cancer patients. This month they have a Special Issue devoted only to Breast Cancer.
Keep us posted...
Wishing you the best,
Maryh
Gosh, lots of interesting information. Regarding Emory well, we did a bunch of research and found that though Emory has a great rep, Sloan is better and yes I do live in a podunk town that is about 3 hours south of Emory which mean a whole bunch of travel. Jack would have to take off too much work. The upside of Sloan is that I have family right there. My bro and sis in law live about 20 minutes from the hospital as well, they are extremely supportive and have a big enough home so that there is plenty of room for my Mom and Dad as well as Jack. He will of course be there for surgery. I feel safer being with my family. My brother hooked me up with a medical oncologist who does this really neat thing. She matches people with surgeons and other docs based upon personalities etc. To get the best doc for you as a person. She has been written up in O magazine among others and has been interviewed many times. I am lucky that her office person is so great. In fact everybody from NYC has been beyond wonderful. Also, the great part about this (if there is a great part) is that I won't have to worry about getting here or there or anything, I will have someone with me at all times. I am blessed to have not only Jack but my family and they are so HERE, if you know what I mean.
Now I am tentatively set for surgery down here on the 16th but since this surgeon has only done 10 sentinel nodes I just can't have him do my surgery, even though he is gentle, kind and special. I have the blessed ability to see the best and go to one of the best places and that I will do. Plus the added bonus is being able so spend some time with my family and my sweet 2 year old neice.
The worst part of all is not having Jack with me for the initial and we are very close. He will be a mess waiting and wondering what they say. I sort of hope they just go over everything and get it DONE. I'm sure most of you felt the same way. Like, GET IT OUT. And has it spread and exactly what will happen. Thank you for the info about mastectomy and chemo. I was so praying that I might bypass that. It's so sad that in order to save our lives that we must be torn down physically, emotionally etc to survive but I have to survive and am only thinking good thoughts. Like the cancer has not spread, like there is no lymph node involvement. Like Jack and I have been through so damn much in the last couple of years that God will smile down upon us and bless us.
Plus Jack has a darling wee one aged 2.5 and though I've never been blessed with my own children well, I couldn't love this child more if she were my own. Jack is the worlds best Daddy and more like a Mommy to her. She was here last night and we had a blast. The sweetest thing on the planet and to have he very own mother tell me that wee one needs me and loves me and she wants me to be with Jack and for wee one to grow up with me. His ex has been just great and very supportive.
So, I will get on that plane next Tuesday and then it will all become REAL, does that make sense? I will pray like never before but not just for me but all of you. What a bunch of strong women, WOW! I want to be like the rest of you.
And tonight is my last hurrah. During the horrid divorce I admit I began to smoke more and drink more (very unlike me). Cripe I was always the designated driver with liar so booze and bars were never my thing. liar is in a band and I've found out has moved his ex college girlfriend in with her three kids. Hate to be him as he does not children. He is now three months late with alimony and my Dad, Jack and bro are now dealing with it all. What goes around comes around and this guy is so selfish he said he is in a cash crunch. Think it was price of the engagement ring or the planned wedding in Scotland? Don't know but if Jack and I have to eat beans and weenies I do not care. liar has some surprises coming his way, legally of course. Like comtempt of court and fines and most likely an irs audit. Oh poor liar and at least now I don't have to fight that fight with the attorney who is the best foot dragger on the planet.
Oh well for that and him I just know the amount of stress he caused me has a direct affect on health. He even told Jack in an email (where Jack told him not to contact me ever again) that perhaps I should go out now and get a job and like I said before that he thought I was lying about BC. Who in God's name would lie about that?
The good news is that while going through all of this Jack and I will be planning a small wedding. I think that is a good thing to do. A way to celebrate life and love and without this man well, I just don't know. And all of you are so right that CA really has a way of putting ones' priorities in line.
So tonight Jack has his second, LOL gig in the last year. I am going to go and have one last party and then I put on my no smoking patches tomorrow and get with the program. For tonight I do not have cancer, for tonight I'm just like anybody else. And tomorrow we go to the church for a cancer celebration to meet and greet and guess what, I'm already considered a survivor since I made it through the diagnosis, Jack too.
Thank you again and I'm coming to love all of you strong strong people. Wish me luck oh and somebody asked about my insurance. I am self insured (thanks mom, dad and bro) and called them. I have been approved for all of it and no worries there, thank God!
Much love and many prayers and hugs, gotta to and get the path and films and stuff now.
Susan0 -
Hi! I have a little input on the reconstruction. I had stage one and was told I had to have a mastectomy. I had the tram flap reconstruction which takes six to eight weeks to get over. It involves making the new breast with your own tissue. Mine came in the form of a tummy tuck. I think if I had it over to do, I'd just have implants. I did'nt have to have any chemo or radiation, but I have to take tamoxifen for the next five years. It's only been ten months since the surgery and I go in for my first mammogram since then on the 15th of the month. Scares the tar out of me. I wish you all the luck in the world and if you have any more questions about the surgery, let me know. I could have gone in to all the details but it would take several pages.0
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Thank you all from me, too....SusanG said:THANK YOU ALL SO MUCH!!!!
Gosh, lots of interesting information. Regarding Emory well, we did a bunch of research and found that though Emory has a great rep, Sloan is better and yes I do live in a podunk town that is about 3 hours south of Emory which mean a whole bunch of travel. Jack would have to take off too much work. The upside of Sloan is that I have family right there. My bro and sis in law live about 20 minutes from the hospital as well, they are extremely supportive and have a big enough home so that there is plenty of room for my Mom and Dad as well as Jack. He will of course be there for surgery. I feel safer being with my family. My brother hooked me up with a medical oncologist who does this really neat thing. She matches people with surgeons and other docs based upon personalities etc. To get the best doc for you as a person. She has been written up in O magazine among others and has been interviewed many times. I am lucky that her office person is so great. In fact everybody from NYC has been beyond wonderful. Also, the great part about this (if there is a great part) is that I won't have to worry about getting here or there or anything, I will have someone with me at all times. I am blessed to have not only Jack but my family and they are so HERE, if you know what I mean.
Now I am tentatively set for surgery down here on the 16th but since this surgeon has only done 10 sentinel nodes I just can't have him do my surgery, even though he is gentle, kind and special. I have the blessed ability to see the best and go to one of the best places and that I will do. Plus the added bonus is being able so spend some time with my family and my sweet 2 year old neice.
The worst part of all is not having Jack with me for the initial and we are very close. He will be a mess waiting and wondering what they say. I sort of hope they just go over everything and get it DONE. I'm sure most of you felt the same way. Like, GET IT OUT. And has it spread and exactly what will happen. Thank you for the info about mastectomy and chemo. I was so praying that I might bypass that. It's so sad that in order to save our lives that we must be torn down physically, emotionally etc to survive but I have to survive and am only thinking good thoughts. Like the cancer has not spread, like there is no lymph node involvement. Like Jack and I have been through so damn much in the last couple of years that God will smile down upon us and bless us.
Plus Jack has a darling wee one aged 2.5 and though I've never been blessed with my own children well, I couldn't love this child more if she were my own. Jack is the worlds best Daddy and more like a Mommy to her. She was here last night and we had a blast. The sweetest thing on the planet and to have he very own mother tell me that wee one needs me and loves me and she wants me to be with Jack and for wee one to grow up with me. His ex has been just great and very supportive.
So, I will get on that plane next Tuesday and then it will all become REAL, does that make sense? I will pray like never before but not just for me but all of you. What a bunch of strong women, WOW! I want to be like the rest of you.
And tonight is my last hurrah. During the horrid divorce I admit I began to smoke more and drink more (very unlike me). Cripe I was always the designated driver with liar so booze and bars were never my thing. liar is in a band and I've found out has moved his ex college girlfriend in with her three kids. Hate to be him as he does not children. He is now three months late with alimony and my Dad, Jack and bro are now dealing with it all. What goes around comes around and this guy is so selfish he said he is in a cash crunch. Think it was price of the engagement ring or the planned wedding in Scotland? Don't know but if Jack and I have to eat beans and weenies I do not care. liar has some surprises coming his way, legally of course. Like comtempt of court and fines and most likely an irs audit. Oh poor liar and at least now I don't have to fight that fight with the attorney who is the best foot dragger on the planet.
Oh well for that and him I just know the amount of stress he caused me has a direct affect on health. He even told Jack in an email (where Jack told him not to contact me ever again) that perhaps I should go out now and get a job and like I said before that he thought I was lying about BC. Who in God's name would lie about that?
The good news is that while going through all of this Jack and I will be planning a small wedding. I think that is a good thing to do. A way to celebrate life and love and without this man well, I just don't know. And all of you are so right that CA really has a way of putting ones' priorities in line.
So tonight Jack has his second, LOL gig in the last year. I am going to go and have one last party and then I put on my no smoking patches tomorrow and get with the program. For tonight I do not have cancer, for tonight I'm just like anybody else. And tomorrow we go to the church for a cancer celebration to meet and greet and guess what, I'm already considered a survivor since I made it through the diagnosis, Jack too.
Thank you again and I'm coming to love all of you strong strong people. Wish me luck oh and somebody asked about my insurance. I am self insured (thanks mom, dad and bro) and called them. I have been approved for all of it and no worries there, thank God!
Much love and many prayers and hugs, gotta to and get the path and films and stuff now.
Susan
I do not like having to be away from her during this initial trip to NYC, but that is a small sacrifice to make in return for having her at one of the best places for treatment. Like Susan said, her brother lives there, has plenty of room and insurance is good to go with it.
I, too, am still in shock about all of it and I guess with a little denial thrown in, that makes it seem unreal. Like Susan, I just want this nightmare to be over with and us getting this hurdle behind us. Printing out that itenerary made it a little more real, though. I'll just be praying that the doctor they match her with will be open and honest and provide the answers that she needs to make the right decisions for her.
Thanks for all your prayers,
Jack0 -
Hi, Susan. I just got back from vacation and saw your message - may be that by the time you see this it will be post-surgery. I live in NYC and went to Sloan-Kettering for both my surgeries and chemo. I was diagnosed in May 2002 with a 1.8 ct. tumor, which was Stage I, Grade 3, ER negative, no nodes. By the way, on the sentinel node biopsy they only take between 1-3 nodes (I had 2) and if they're clear, they won't take any others. I had a lumptectomy and then a re-excision and a bi-lateral oopherectomy to remove my ovaries, both of which had tumors (thank God not cancer). My first surgery was on 6/10/03 and my second for the oopherectomy and breast re-excision was 7/1/03. I loved both my surgeon, Dr. Alexandra Heerdt, and oncologist, Dr. Mark Robson. I can't say overemphasize how excellent treatment was in the hospital. They have a really incredible staff and you can definitely have your treatments done elsewhere after they've decided on the protocol. I had 6 months of CMF chemo (once every 3 weeks, though the protocol may have changed since then I think) followed by radiation. There are definitely cases where they will not recommend chemo (I had two friends who only needed surgery and radiation followed by Tamoxifen). But both had extremely small tumors (under 1 ct.), no nodes, Grade 1 and ER positive, Hr2Neu negative. If the tumor is 1 ct. or larger and you're ER negative they'll no doubt want you to have chemo. I know your in wonderful hands at Sloan. Best of luck with everything. Ellen0
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