Regrets? Lumpectomy vs. Bi-Lateral Mastectomy w/Reconstruction
What a wonderful group of people you are! I just joined tonight and was reading through several different topics and everyone is so helpful and encouraging. Thank you in advance for all your help and support. I'm so glad you are all HERE!
I'm 42 and was diagnosed with Infiltrating Ductal Carcinoma this week (4/13/09). My tumor is about 7mm in size and the five biopsies taken from my tumor showed both IDC and in situ with "focal lymphatic invasion observed". This tumor was NOT found on the mammogram--it was found by my husband. I have the genetic blood test on 4/20 to see if I carry the marker (I had a grandmother with BC) and will be getting an MRI on 4/24 to see if any other tumors can be found prior to surgery. The recommendation by the doctor was a lumpectomy with radiation and tamoxifen for 5 years. (Dr. will do whatever I want but I asked for his recommendation). He didn't feel chemo would be necessary at this point but obviously contingent on the surgery results and if there's any lymph node invasion and its severity. He felt the possibility of lymph node invasion would be in the single digits, as this tumor is small and we think we're early. I'm tentitively scheduled for surgery on May 7th. I'm meeting with a plastic surgeon this next week to discuss reconstruction.
After I dislodged the brick that had been thrown in my face when I learned I had breast cancer, my immediate thought was a bi-lateral mastectomy with reconstruction. I have 2 pre-school aged children that I need to be here for -- a long time. I also fought leukemia for 10 years as a child -- this is my second round with cancer and my maternal grandmother had BC. Some of my family is concerned that I'm being too hasty in my rush to have a complete mastectomy since the odds don't vary from the lumpectomy vs. mastectomy. They are concerned that I don't have enough information to come to this determination yet. While I appreciate their honesty and loving approach to this, I seriously doubt I'm going to change my mind due to my history. My family will support any decision I make, they just want to make sure I've thought it through enough. For me, I can't seem to move fast enough to schedule this surgery. I just want to be done with this and move on to the next step -- figuring out how to live my "new" life without anxiety attacks! I know you all understand this, which is why I'm here.
I'd like to hear from those of you who had a similar situation when a lumpectomy was recommended but you decided to do a bi-lateral mastectomy. I'd also love to hear from those of you who chose the lumpectomy. I'm interested in everyone's perspective whether you agree with my way of thinking or not -- I'm open to other experiences. If you had to do it all over again, would you change your decision? Are you happy with your results? Do you have any regrets? Do you have any advice?
Also wanted to know that if I chose to get implants (which would be done immediately following the surgery), how will my "mammograms" be done? Will I need them anymore? Will this just be a normal chest x-ray now or will it be an MRI? I know I can still get BC at the chest cavity so I'm curious how they monitor this. I forgot to ask the doctor about this and would appreciate some help.
Thank you all so much! I'm looking forward to the responses.
Janet
Comments
-
my decision
Janet,
Welcome to this wonderful site where you will get loads of information and support from others.
I was diagnosed with DCIS with invasion on 12/8/08 and was told that all I needed was a lumpectomy with lymph node biopsy--The doctor that I saw could not tell me where the invasion would be so I went for a second opinion and it was highly recommended by the second team that a mastectomy should be done--I decided to have a bilateral mastectomy because of a strong family history of breast cancer. I had the genetics testing for BRCA1 and BRCA2 which both came out negative--so that was good news.
I had my surgery on my 45th birthday with tissue expanders put in at the same time. My recovery was a breeze--others may not have had the same out come. The path report came back that I was negative on the hormones but I was HER2+ which is an aggressive type breast cancer--lymph nodes were negative as well--so I was stage 1. My treatment plan is as follows: chemo treatment Adromyocin/Cytoxan every other week for 4 treatments(I have one more to go) then Taxol with Herceptin(which targets the HER2+ gene) every week for 12 weeks and then Herceptin alone every 3 weeks for one year.
I will not need mammograms--only palpable exams by myself and doctor.
My tissue expanders will be taken out and replaced with permanent ones three months after I finish the Taxol--day surgery.
I would not have changed my mind. If I had gone with the lumpectomy with lymph node biopsy I would have had to have the mastectomy done anyway because of the HER2+--this is what my surgeon had told me when the path report came back.
My advice to you is to be comfortable with your decision and have confidence in your doctors and always have your questions answered. Write down any questions that might come up in between appointments so they can be answered when you see your provider again. Also bring someone with you because that person may hear something that you may have missed. Get support not only from family and friends but you have support from the ladies and gents and care givers on this site as well.
Positive thoughts and prayers will be with you through your journey.
Hugs,
Margo0 -
your questions
I am very, very glad I had a mastectomy. Here's my story: I was diagnosed with stage I cancer in Jan. of 08. The doctors put a lot of pressure to have a lumpectomy, but I chose mastectomy because: 1.) basically I am a non-trusting person. Research results can change - I thought: what happens if they do more research and find out mastectomy DOES increase the survival rates? 2.) even if the survival rates are the same, the local recurrence incidence is slightly higher with lumpectomy and I don't want to have to go thru chemo ever again if I can help it Anyway, it turns out I was right, because AFTER I had the one breast removed, I was tested for BRCA and turned out to be BRCA 1 (another example of not trusting doctors: my breast surgeon said it was probably was not necessary for me to get this genetic test because 'BRCA is so rare, you probably don't have it). With BRCA it is more likely bc will go to the opposite breast, so I then had another prophylactic mastectomy on the other breast. It is also recommended to have a mastectomy with BRCA, so thank God I didn't give into the pressure to get a lumpectomy! No disrespect to the women who have lumpectomies - every has to make their own decision - but this decision was definitely right for me. If you feel in your gut you want a bilateral, don't allow others to sway you.
About the implant: I do have implants, and for a long time after my mastectomies I kept on asking questions about how I will be monitored. It turns out the standard of care after a mastectomy is just for the doctor to examine you by touch every 3 to 6 months. Apparently if bc does grow back after a mastectomy, it would do so near the skin and could best be detected by touch.
Best of luck,
Ohilly0 -
second opinion
Janet,
This waiting time before surgery is agonizing.
A couple of things: they can't really tell the size of your tumor until they have completely removed it. My tumors were 1.4 and .5 cm. When I first read your post, I was thinking yours was 7 cm--but I guess it's .7 cm. (Seven would be pretty big--chemo would probably be recommended.)
Mortality with lumpectomy vs. mastectomy is the same, or so I was told. So your chances of living are the same. But the chances of recurrance--or of another instance of BC--are much higher with lumpectomy. I actually had two separate instances of BC at the same time. Several people here have had another instance--not recurrance--of BC after years and years.
With the mastectomy, you have very, very little breast tissue, so there is not much chance. And the breast tissue is very close to the skin, so you (or your doctor) could see it easily and quickly.
If you have such a small tumor, and no lymph node involvement (so no radiation recommended) you can do bilateral mast. and reconstruction at the same time. That's what I did--3/4/09. They did a frozen section on the sentinel lymph nodes to get quick results--had there been cancer in the nodes, the surgery would have changed in mid-stream.
I had DIEP reconstruction--they used my belly fat to build me new breasts. So I got a tummy-tuck and new breasts in one fell swoop.
Because it's my tissue in the breast cavity, it should never have to be re-done. Implants don't last forever, and must be replaced--every 10-15 years--which would be several times for you at 42!
I did not have the BRCA gene--test results just back. Mom had BC, aunt had ovarian. 80% of BCs are not genetic.
Best of luck on this journey--you have come to a great place for information!
Lisa0 -
Welcome Janet
I am glad you found us here. The support and encouragement you will receive from our sisters (and brothers) in pink is priceless. You will never feel alone..we are here night or day.
The only regret i have is that i didn't have a bilateral. I had a left mastectomy I asked the Dr. at the last minute before surgery if i could have bilateral (just for fear it would return sometime in the right breast) he said it was to late. and we would keep a close watch on it. The same Dr. had recommended a lumpectomy and radiation, but they truly don't know until they remove the tumor and test the lymph nodes. My tumor was 2.5 and i had 6 pos. lymph nodes. So i had made the right decision...but i still wish i had them both removed for prevention.
I also don't trust mamograms as much as i do ultrasounds in detecting bc mine showed immediately in the ultrasound (which i insisted upon) and i was told right away..no waiting..that it was 99% bc.
Everyone is different so you will have to make the best decision for yourself. Keep us posted and let us know how it is going and what you decide. You will be in my thoughts and prayers.
God Bless
jackie0 -
Welcome, ajflight!
Hello, Janet. And welcome! I'm still new here, joined almost a week ago. Am so glad I did - and you will be, too! I am now approaching my 6 year anniversary for original diagnosis. My surgery was lumpectomy w/sentinel nodes (7 of 15 positive for cancer) removal, followed by both high dosage/"compressed" chemotherapy & 35 radiation treatments. Still taking meds. Prior to me, no family history, of any type of cancer. I am the first.
Sometimes I think that where you are now, so new to your own diagnosis, is the most difficult part of the journey. So much information to discover & learn, so very many questions, not enough hard & fast answers. (Someone I know once opined that we should all get some kind of a "breast cancer diploma" upon completion of treatments!) You have many, many complicated & important decisions to make. So, I suggest you take a deep breath (maybe 10!).
Very early on, I instructed my surgeon to "take the whole damned thing - take them both off." He resisted, explaining that mastectomy is much more "invasive" surgery vs. lumpectomy - and strongly believed & recommended that lumpectomy was the best way to go. For me, that is. Almost 6 years later, I'm still here - and, remain in remission/NED (no evidence of disease). Which brings me to a very important point to always remember while reading posts here - everyone's case is as unique as the individual patient. Please, never forget this.
Maybe consider a 2nd opinion, if that would help you to make the final surgical decision you're most comfortable with. Also, I'll warn you now - nothing will move fast "enough"... It is one step at a time, with lots of waiting in between steps. This cannot be avoided, as each step provides new information that will determine what's best for you before you take the next. I, too, was quite desperate to "get my life back" - basically, from the moment of diagnosis. This was my focus, my goal, throughout treatment. It's what kept me going. But, experience has taught me that we do not get our life back until long after all treatment (no matter the type) has ended AND the body has had a chance to completely heal. If you are experiencing true anxiety attacks, please inform your doctor and ask for help. Please do not be ashamed about this. It is not a sign of weakness, in any way.
This group of amazing folks, so willing & open to help, provide advice & tips, support & encourage - even to make you smile when you least expect to! - will be an invaluable resource as you continue along your own personal journey. I confidently promise you so.
With hopes & prayers your way...
Kind regards, Susan0 -
Thanks for the infotommaseena said:my decision
Janet,
Welcome to this wonderful site where you will get loads of information and support from others.
I was diagnosed with DCIS with invasion on 12/8/08 and was told that all I needed was a lumpectomy with lymph node biopsy--The doctor that I saw could not tell me where the invasion would be so I went for a second opinion and it was highly recommended by the second team that a mastectomy should be done--I decided to have a bilateral mastectomy because of a strong family history of breast cancer. I had the genetics testing for BRCA1 and BRCA2 which both came out negative--so that was good news.
I had my surgery on my 45th birthday with tissue expanders put in at the same time. My recovery was a breeze--others may not have had the same out come. The path report came back that I was negative on the hormones but I was HER2+ which is an aggressive type breast cancer--lymph nodes were negative as well--so I was stage 1. My treatment plan is as follows: chemo treatment Adromyocin/Cytoxan every other week for 4 treatments(I have one more to go) then Taxol with Herceptin(which targets the HER2+ gene) every week for 12 weeks and then Herceptin alone every 3 weeks for one year.
I will not need mammograms--only palpable exams by myself and doctor.
My tissue expanders will be taken out and replaced with permanent ones three months after I finish the Taxol--day surgery.
I would not have changed my mind. If I had gone with the lumpectomy with lymph node biopsy I would have had to have the mastectomy done anyway because of the HER2+--this is what my surgeon had told me when the path report came back.
My advice to you is to be comfortable with your decision and have confidence in your doctors and always have your questions answered. Write down any questions that might come up in between appointments so they can be answered when you see your provider again. Also bring someone with you because that person may hear something that you may have missed. Get support not only from family and friends but you have support from the ladies and gents and care givers on this site as well.
Positive thoughts and prayers will be with you through your journey.
Hugs,
Margo
Hi Margo,
Thanks so much for sharing your situation with me and hugs back to you too! Congrats on your positive test results on the nodes, hormones and genetics test! Whew! However, I'm confused...why did you need chemo if you had a bilateral and your lymph nodes were clean? I thought if you had a mastectomy, chemo wasn't necessary unless you had lymph node invasion. I'm new to this so I must have missed something because my doctor really didn't think chemo would be necessary in my case. He specifically told me no chemo, no radiation and no tamoxifin if I went with a bilateral. I've been reading about women with similar cancers and diagnosis but very different treatment plans. It's difficult to find a pattern. What determines whether you need chemo or not? Was it the HER2+?
My HER2 results were 1.5 and stated they were within the "normal limit" on the report. However, they did tell me they sent this to the lab for further investigation and determination, which is not common. I'm a little concerned since the test came back 1.5 and they felt they needed to review it again and complete additional testing. (I'm grasping at any little bit of good news I can get these days!) My ER (90%) and PR (21%) results came back within the "favorable" range but I'm not really sure what "favorable" is anymore. I will follow up with the doctor for these results tomorrow.
I'm pleased to hear you're happy with the decision you made. That's a huge help for me just knowing that you've chosen the best option for YOU, despite what your doctor recommended and you're content with that. I like my doctor but they are wrong from time to time and I want to be in control of my destiny based on my own educated decisions.
Margo, thanks again for your kindness and please keep me posted on your progress. I'm keeping you and the rest of the clan in my prayers.
Janet0 -
Are you my twin?ohilly said:your questions
I am very, very glad I had a mastectomy. Here's my story: I was diagnosed with stage I cancer in Jan. of 08. The doctors put a lot of pressure to have a lumpectomy, but I chose mastectomy because: 1.) basically I am a non-trusting person. Research results can change - I thought: what happens if they do more research and find out mastectomy DOES increase the survival rates? 2.) even if the survival rates are the same, the local recurrence incidence is slightly higher with lumpectomy and I don't want to have to go thru chemo ever again if I can help it Anyway, it turns out I was right, because AFTER I had the one breast removed, I was tested for BRCA and turned out to be BRCA 1 (another example of not trusting doctors: my breast surgeon said it was probably was not necessary for me to get this genetic test because 'BRCA is so rare, you probably don't have it). With BRCA it is more likely bc will go to the opposite breast, so I then had another prophylactic mastectomy on the other breast. It is also recommended to have a mastectomy with BRCA, so thank God I didn't give into the pressure to get a lumpectomy! No disrespect to the women who have lumpectomies - every has to make their own decision - but this decision was definitely right for me. If you feel in your gut you want a bilateral, don't allow others to sway you.
About the implant: I do have implants, and for a long time after my mastectomies I kept on asking questions about how I will be monitored. It turns out the standard of care after a mastectomy is just for the doctor to examine you by touch every 3 to 6 months. Apparently if bc does grow back after a mastectomy, it would do so near the skin and could best be detected by touch.
Best of luck,
Ohilly
Hi Ohilly,
I read your response outloud to my husband and he immediately asked me if you were my missing twin! Your first response is me to a tee! I have used the exact same reasoning in trying to explain how I feel to him and I agree with you wholeheartedly. I'm sorry you had to go through more surgery than necessary but I'm glad you took care of it.
Thanks for the info on the implants. I never realized all we would get was a touch exam going forward. I guess it makes sense but still never reassuring enough.
Thanks for your help. I appreciate you sharing your experience and wisdom with me. It just solidifies my "gut" feeling and helps me feel more confident in my decision.
Take care.
Janet0 -
Great info - thanks!Ltalcott said:second opinion
Janet,
This waiting time before surgery is agonizing.
A couple of things: they can't really tell the size of your tumor until they have completely removed it. My tumors were 1.4 and .5 cm. When I first read your post, I was thinking yours was 7 cm--but I guess it's .7 cm. (Seven would be pretty big--chemo would probably be recommended.)
Mortality with lumpectomy vs. mastectomy is the same, or so I was told. So your chances of living are the same. But the chances of recurrance--or of another instance of BC--are much higher with lumpectomy. I actually had two separate instances of BC at the same time. Several people here have had another instance--not recurrance--of BC after years and years.
With the mastectomy, you have very, very little breast tissue, so there is not much chance. And the breast tissue is very close to the skin, so you (or your doctor) could see it easily and quickly.
If you have such a small tumor, and no lymph node involvement (so no radiation recommended) you can do bilateral mast. and reconstruction at the same time. That's what I did--3/4/09. They did a frozen section on the sentinel lymph nodes to get quick results--had there been cancer in the nodes, the surgery would have changed in mid-stream.
I had DIEP reconstruction--they used my belly fat to build me new breasts. So I got a tummy-tuck and new breasts in one fell swoop.
Because it's my tissue in the breast cavity, it should never have to be re-done. Implants don't last forever, and must be replaced--every 10-15 years--which would be several times for you at 42!
I did not have the BRCA gene--test results just back. Mom had BC, aunt had ovarian. 80% of BCs are not genetic.
Best of luck on this journey--you have come to a great place for information!
Lisa
Hi Lisa,
Thank you for sharing your story and giving me so much information. I feel like I'm cramming for a test lately! My brain is on overload.
Your explanation of mortality vs. recurrance with the lumpectomy vs. bilateral was great. I've had that same exact reasoning in my head but haven't been able to explain it to my family the right way to make them understand my insistence on a bilateral mastectomy. How could your mortality be the same if you had no breast tissue for BC? I just couldn't comprehend these statistics when I read up on it -- I had the right thought, just the wrong terms.
Yes, short term, lumpectomy vs. mastectomy survival is the same but there's a huge difference between mortality and recurrence rates, at least to me there is. The risk for recurrence was the point I've been trying to convey. Why play with fire? I want to reduce my odds for any future issues as much as I possibly can and a bilateral is an aggressive approach to this. It's the absolute MOST I can possibly do to reduce my chance for recurrence at this point and hopefully avoid any other instances.
I didn't realize implants needed to be redone after a period of time which raises several other issues for me going forward. Thank you for mentioning that. I'm meeting with the plastic surgeon this week to discuss my options so I don't know what's available at this time except for saline or silicone. I hear the procedure you had done is quite painful, although I would love a tummy tuck! Two children in 18 months and an extra 30 pounds over the years -- I would certainly be willing to donate any extra belly fat to women who may opt for this procedure! How was it for you and what was the process and time frame? I'm not opposed to implants but I don't know much about them vs. DIEP procedure you refer to. I'm concerned my body won't accept a plastic object immediately following major surgery. I don't know any of the risks of implants yet since I've been absorbed with the bc diagnosis. Any thoughts or comments on that?
How are you doing since your surgery? Are you glad you made the choice you did? Would you change anything at this point?
Thank you for the great info and sharing your situation with me. I truly appreciate it!
Please keep me posted on your BRCA results. I'm praying for good results for you!
Janet0 -
one more thingajflight said:Are you my twin?
Hi Ohilly,
I read your response outloud to my husband and he immediately asked me if you were my missing twin! Your first response is me to a tee! I have used the exact same reasoning in trying to explain how I feel to him and I agree with you wholeheartedly. I'm sorry you had to go through more surgery than necessary but I'm glad you took care of it.
Thanks for the info on the implants. I never realized all we would get was a touch exam going forward. I guess it makes sense but still never reassuring enough.
Thanks for your help. I appreciate you sharing your experience and wisdom with me. It just solidifies my "gut" feeling and helps me feel more confident in my decision.
Take care.
Janet
Yes, I am your twin! As far as the follow-up, I initially had a hard time with just being 'palpated.' I discussed all kinds of scans and MRIs with my doctors, but after much research myself and talking to a multitude of doctors, I came to the conclusion that maybe I should just go along with the current standard of care: i.e., no scans. The way I try and be proactive is by searching for clinical trials on the web every week. There are several breast cancer sites I look at to do this: one is www.breastcancer.org and the other is Living Beyond Breast Cancer (I forgot the site, but you could google it). They list clinical trials all the time. I actually found my own clinical trial through my own research: you may be interested in this, too: they have found that Zometa is a new drug that is supposed to prevent recurrence. You should also your oncologist about this drug.
Good luck! I think your mind is really made up to do the bilateral. You just wanted some reassurance. Everyone feels differently, but I really didn't care about my breasts being removed. What upset me much more is the way my hair thinned from taking Femara.
Hugs,
Ohilly0 -
Pink IS Pricelessrjjj said:Welcome Janet
I am glad you found us here. The support and encouragement you will receive from our sisters (and brothers) in pink is priceless. You will never feel alone..we are here night or day.
The only regret i have is that i didn't have a bilateral. I had a left mastectomy I asked the Dr. at the last minute before surgery if i could have bilateral (just for fear it would return sometime in the right breast) he said it was to late. and we would keep a close watch on it. The same Dr. had recommended a lumpectomy and radiation, but they truly don't know until they remove the tumor and test the lymph nodes. My tumor was 2.5 and i had 6 pos. lymph nodes. So i had made the right decision...but i still wish i had them both removed for prevention.
I also don't trust mamograms as much as i do ultrasounds in detecting bc mine showed immediately in the ultrasound (which i insisted upon) and i was told right away..no waiting..that it was 99% bc.
Everyone is different so you will have to make the best decision for yourself. Keep us posted and let us know how it is going and what you decide. You will be in my thoughts and prayers.
God Bless
jackie
Hi Jackie,
Thank you for taking the time to share your experience and feelings with me. I'm sorry you weren't able to change your surgery to a bilateral but it must be comforting knowing you made the right decision. Your insistence on the ultrasound was absolutely priceless and heroic -- you're your own best advocate! I just don't understand why an ultrasound isn't the standard for breast exams? Is it the cost? Until this week, I had no idea how many women are out there with malignant tumors that are never caught on a mammogram.
Your good thoughts, prayers and willingness to write is comforting. I feel a little better each time learn more information from this site and meet someone new. I look foward to keeping in touch with all my new friends here.
Thanks again for your kindness.
Janet0 -
Welcome to you too!Christmas Girl said:Welcome, ajflight!
Hello, Janet. And welcome! I'm still new here, joined almost a week ago. Am so glad I did - and you will be, too! I am now approaching my 6 year anniversary for original diagnosis. My surgery was lumpectomy w/sentinel nodes (7 of 15 positive for cancer) removal, followed by both high dosage/"compressed" chemotherapy & 35 radiation treatments. Still taking meds. Prior to me, no family history, of any type of cancer. I am the first.
Sometimes I think that where you are now, so new to your own diagnosis, is the most difficult part of the journey. So much information to discover & learn, so very many questions, not enough hard & fast answers. (Someone I know once opined that we should all get some kind of a "breast cancer diploma" upon completion of treatments!) You have many, many complicated & important decisions to make. So, I suggest you take a deep breath (maybe 10!).
Very early on, I instructed my surgeon to "take the whole damned thing - take them both off." He resisted, explaining that mastectomy is much more "invasive" surgery vs. lumpectomy - and strongly believed & recommended that lumpectomy was the best way to go. For me, that is. Almost 6 years later, I'm still here - and, remain in remission/NED (no evidence of disease). Which brings me to a very important point to always remember while reading posts here - everyone's case is as unique as the individual patient. Please, never forget this.
Maybe consider a 2nd opinion, if that would help you to make the final surgical decision you're most comfortable with. Also, I'll warn you now - nothing will move fast "enough"... It is one step at a time, with lots of waiting in between steps. This cannot be avoided, as each step provides new information that will determine what's best for you before you take the next. I, too, was quite desperate to "get my life back" - basically, from the moment of diagnosis. This was my focus, my goal, throughout treatment. It's what kept me going. But, experience has taught me that we do not get our life back until long after all treatment (no matter the type) has ended AND the body has had a chance to completely heal. If you are experiencing true anxiety attacks, please inform your doctor and ask for help. Please do not be ashamed about this. It is not a sign of weakness, in any way.
This group of amazing folks, so willing & open to help, provide advice & tips, support & encourage - even to make you smile when you least expect to! - will be an invaluable resource as you continue along your own personal journey. I confidently promise you so.
With hopes & prayers your way...
Kind regards, Susan
Hi Susan,
I am glad to be here (in a twisted way, you know!) The more responses I get, the more confident I feel. I'm grateful for that. Congratulations on your anniversary too - what a journey you've been on! Your success is encouraging to people in my stage right now. I felt I was issued a death sentence when I found out. Now, I realize it's just a life sentence and I have control over most of it. It's still a huge life change but it's just that ... a change. Thank you for sharing your thoughts and experience with me.
I'm very pleased to see you're happy with your decision for the lumpectomy. Many women I've spoken with here or friends or mothers of friends, have gone the bilateral route and been satisified in almost all instances, for whatever reason they had -- which differs from one end of the spectrum to the other. I was glad to see you were happy with your decision and never looked back. I appreciate your fortitude and I'm glad you took the time to write.
Your points about taking it one step at a time mimic my family's concerns and thought pattern. They feel I've made a decision before getting all the pertinent information I need to make that decision! Very valid point but I don't know the outcome of some of these tests are going to change my thought process. After speaking with a few of you, it's only reaffirmed my "gut" feeling that a bilateral mastectomy is the best option for me long term -- physically and mentally.
Thanks for all your prayers and good wishes. I'm already getting the support I so desperately needed.
Take care and God bless!
Janet0 -
new tooajflight said:Welcome to you too!
Hi Susan,
I am glad to be here (in a twisted way, you know!) The more responses I get, the more confident I feel. I'm grateful for that. Congratulations on your anniversary too - what a journey you've been on! Your success is encouraging to people in my stage right now. I felt I was issued a death sentence when I found out. Now, I realize it's just a life sentence and I have control over most of it. It's still a huge life change but it's just that ... a change. Thank you for sharing your thoughts and experience with me.
I'm very pleased to see you're happy with your decision for the lumpectomy. Many women I've spoken with here or friends or mothers of friends, have gone the bilateral route and been satisified in almost all instances, for whatever reason they had -- which differs from one end of the spectrum to the other. I was glad to see you were happy with your decision and never looked back. I appreciate your fortitude and I'm glad you took the time to write.
Your points about taking it one step at a time mimic my family's concerns and thought pattern. They feel I've made a decision before getting all the pertinent information I need to make that decision! Very valid point but I don't know the outcome of some of these tests are going to change my thought process. After speaking with a few of you, it's only reaffirmed my "gut" feeling that a bilateral mastectomy is the best option for me long term -- physically and mentally.
Thanks for all your prayers and good wishes. I'm already getting the support I so desperately needed.
Take care and God bless!
Janet
Hi All,
I am new too, but I have posted a few times recently. Thanks to you all! I have never once regretted my decision to have bilateral mastectomies with reconstruction (implants). Although I had them done at two different times. I will be brief, but originally I had a mastectomy by choice ( I was told I could also have a lumpectomy- it was my choice). BUT the surgery/pathology uncovered 5 additional cancers in 3 other quadrants that did not show up on digital mammo or MRI. My largest tumor was 2.5cm. I also had 21 nodes removed; 3 of which were positive. I decided after chemotherapy to have a prophylactic mastectomy on the other side due to fear of adequately monitoring the breast in the future. Other info-Stage 2B, ER+, PR-, HER-, Chemo- AC and Taxol dose dense, tamoxifen and Zometa twice yearly. I am a 2 year 4 month survivor and a mother of 4 (3 teen boys and a 21 yr old daughter)! I was premenopausal- 48yrs old at DX. I think my toughest times were the initial decision on the type of surgery and the year after treatment stopped!! I look forward to getting to know you'll better
!Good luck to you,
Susie0 -
Hi Janet!
I had a lumpectomy in January of this year. I have had 24 radiation treatments with 13 to go. My oncologist gave me several choices, but, the ultimate decision was mine. My oncologist's main recommendation however, was a lumpectomy, followed by radiation, followed by tamoxifen. I will try to take tamoxifen for 5 years. I say "try" because if I have some of the crappy side effects that some here have..I will stop it. It wouldn't be worth it to me. My bc was found on a mammogram. It was microcalcifications which meant something was up. I then had more intense mammograms, an ultrasound, an ultrasound guided core biopsy and a MRI. It showed a small cancer in my breast so I was scheduled for surgery. My pathology report showed a small tumor .8 cm tumor, my margins were clean and no node involvement. I had dcis and idc. You and/or your doctor's cannot tell you specifically what your treatment will be until after your surgery and the pathology report is in. With that...you can decide and make whatever choice is best for YOU! I chose the lumpectomy as my breasts are important to me and I didn't want to lose them and I didn't want to have bad scars. Please, anyone that has had a mastectomy, don't be hurt or offended at that..It is just the way I feel and I am very happy with my choice. Be sure and do your research...ask questions and take someone with you if you can to listen to what the doctor's say and write it down or take a tape recorder. This is YOUR body, YOUR life and it will ultimately be YOUR choice. I wish you the best of luck!0 -
The reason for chemo is I had DCIS with invasion and that is why the chemo before the Herceptin. My HER2+ was 3+. My tumor size was 1.6cm at the time of the mastectomy. At the time of the Stereotactic biopsy the tumor size was 2.7cm so they took 1.1cm out with the biopsy. If you path report is hormone driven and tumor size then you may not need the chemo or rads. I am glad yours was not HER2+ out of the normal range. HER2+ is a protein gene and an aggressive type cancer if it is out of the normal levels.ajflight said:Thanks for the info
Hi Margo,
Thanks so much for sharing your situation with me and hugs back to you too! Congrats on your positive test results on the nodes, hormones and genetics test! Whew! However, I'm confused...why did you need chemo if you had a bilateral and your lymph nodes were clean? I thought if you had a mastectomy, chemo wasn't necessary unless you had lymph node invasion. I'm new to this so I must have missed something because my doctor really didn't think chemo would be necessary in my case. He specifically told me no chemo, no radiation and no tamoxifin if I went with a bilateral. I've been reading about women with similar cancers and diagnosis but very different treatment plans. It's difficult to find a pattern. What determines whether you need chemo or not? Was it the HER2+?
My HER2 results were 1.5 and stated they were within the "normal limit" on the report. However, they did tell me they sent this to the lab for further investigation and determination, which is not common. I'm a little concerned since the test came back 1.5 and they felt they needed to review it again and complete additional testing. (I'm grasping at any little bit of good news I can get these days!) My ER (90%) and PR (21%) results came back within the "favorable" range but I'm not really sure what "favorable" is anymore. I will follow up with the doctor for these results tomorrow.
I'm pleased to hear you're happy with the decision you made. That's a huge help for me just knowing that you've chosen the best option for YOU, despite what your doctor recommended and you're content with that. I like my doctor but they are wrong from time to time and I want to be in control of my destiny based on my own educated decisions.
Margo, thanks again for your kindness and please keep me posted on your progress. I'm keeping you and the rest of the clan in my prayers.
Janet
Implants: Both type have to be replaced every 15 years-this is what my plastic surgeon told me. Saline implants are harder or firmer then silicone ones which are softer feeling. I don't know this personally since I only have the tissue expanders and I know these are being filled with saline and they are hard.
Wishing you the best in your decision.
Hugs,
Margo0 -
Hi Janet ...Kristin N said:Hi Janet!
I had a lumpectomy in January of this year. I have had 24 radiation treatments with 13 to go. My oncologist gave me several choices, but, the ultimate decision was mine. My oncologist's main recommendation however, was a lumpectomy, followed by radiation, followed by tamoxifen. I will try to take tamoxifen for 5 years. I say "try" because if I have some of the crappy side effects that some here have..I will stop it. It wouldn't be worth it to me. My bc was found on a mammogram. It was microcalcifications which meant something was up. I then had more intense mammograms, an ultrasound, an ultrasound guided core biopsy and a MRI. It showed a small cancer in my breast so I was scheduled for surgery. My pathology report showed a small tumor .8 cm tumor, my margins were clean and no node involvement. I had dcis and idc. You and/or your doctor's cannot tell you specifically what your treatment will be until after your surgery and the pathology report is in. With that...you can decide and make whatever choice is best for YOU! I chose the lumpectomy as my breasts are important to me and I didn't want to lose them and I didn't want to have bad scars. Please, anyone that has had a mastectomy, don't be hurt or offended at that..It is just the way I feel and I am very happy with my choice. Be sure and do your research...ask questions and take someone with you if you can to listen to what the doctor's say and write it down or take a tape recorder. This is YOUR body, YOUR life and it will ultimately be YOUR choice. I wish you the best of luck!
I totally agree with everyone else ... every case/situation is different and we all have to make our own decisions how to handle things. What is right for one person may not be right for another. You just have to get as much information as possible ... listen to and trust your doctor ... and move forward. I had a lumpectomy in January. The tumor was less than 1cm and the nodes were clear. A mastectomy was never mentioned. I trusted my doctor(s) and still do. They believed this was the best for my individual case and I am totally comfortable with that decision. The lumpectomy was a "breeze." The lab results came back HER2+ so I am now in the middle of chemo ... taxol and herceptin for 8-12 weeks ... followed by daily radiation for 6 weeks and by herceptin every 3 weeks for a year ... followed by tamoxifen for 5 years.
I consider myself one of the lucky ones because I have NEVER felt sick. Not for one minute. If I didn't have a few scars ... and a port "installed" ... I would never know anything was going on... other than a few "minor" side effects from the chemo. But ... I think I can handle ANY side effect ... as long as there's no nausea.
Good luck ... and no matter what you decide ... try not to second-guess yourself. Don't do the "what-ifs" ... since it will be using up energy you need to move forward. If you are experiencing panic attacks ... tell your doctor. I did. And he gave me a prescription for xanax ... and it has helped a lot!
hugs.
teena0 -
no regretsajflight said:Great info - thanks!
Hi Lisa,
Thank you for sharing your story and giving me so much information. I feel like I'm cramming for a test lately! My brain is on overload.
Your explanation of mortality vs. recurrance with the lumpectomy vs. bilateral was great. I've had that same exact reasoning in my head but haven't been able to explain it to my family the right way to make them understand my insistence on a bilateral mastectomy. How could your mortality be the same if you had no breast tissue for BC? I just couldn't comprehend these statistics when I read up on it -- I had the right thought, just the wrong terms.
Yes, short term, lumpectomy vs. mastectomy survival is the same but there's a huge difference between mortality and recurrence rates, at least to me there is. The risk for recurrence was the point I've been trying to convey. Why play with fire? I want to reduce my odds for any future issues as much as I possibly can and a bilateral is an aggressive approach to this. It's the absolute MOST I can possibly do to reduce my chance for recurrence at this point and hopefully avoid any other instances.
I didn't realize implants needed to be redone after a period of time which raises several other issues for me going forward. Thank you for mentioning that. I'm meeting with the plastic surgeon this week to discuss my options so I don't know what's available at this time except for saline or silicone. I hear the procedure you had done is quite painful, although I would love a tummy tuck! Two children in 18 months and an extra 30 pounds over the years -- I would certainly be willing to donate any extra belly fat to women who may opt for this procedure! How was it for you and what was the process and time frame? I'm not opposed to implants but I don't know much about them vs. DIEP procedure you refer to. I'm concerned my body won't accept a plastic object immediately following major surgery. I don't know any of the risks of implants yet since I've been absorbed with the bc diagnosis. Any thoughts or comments on that?
How are you doing since your surgery? Are you glad you made the choice you did? Would you change anything at this point?
Thank you for the great info and sharing your situation with me. I truly appreciate it!
Please keep me posted on your BRCA results. I'm praying for good results for you!
Janet
I'm glad I've made the decisions and had the surgery I did. One reason not to do the DIEP is that it is much more complicated surgery--I was in surgery for 17 hours! You have a team of surgeons, and you want a team that knows what they are doing.
Also, if there is a chance you could need radiation, they don't like to do the DIEP before the radiation because of the potential damage to the newly made "breasts." I was told I would probably not need radiation because of the small tumor size and because they could not feel my lymph nodes ( 3 or more positive nodes and I would need radiation.)
Something else that you should ask about: there is an Oncotype DX test that gives you a recurrance score. Under 11 and chemo doesn't help, very low chance of recurrance. Over 24, chemo will really help. Between 12-23, you have to make the chemo decision on your own. My Oncotype DX score on the left (bigger tumor--1.4 cm) was a 9, which makes that decision easy. I should get back the score on the right later this afternoon. The Oncotype DX is for women with small tumors, no lymph node involvement, and hormone positive tumors. (But it's no good if your score is in the middle.)
The DIEP surgery was certainly not pain-free, but the recovery is easier than the other type of reconstructions using muscle or back tissue. Not easier than implants, I guess. I am almost seven weeks out of surgery, and this is the start of my second week back at work half-time.
There are several other threads on DIEP and Oncotype DX on this discussion board. Search them out.
Lisa0 -
More two-cents worth...
Hi Janet,
I enjoyed reading all the posts here this morning. There's so much information on this board, and so many great people, that it's really hard to keep up! Welcome to you.
I was diagnosed with DCIS in situ 3/13/09 (Friday the 13th, ha, ha) in the left breast. I found the lump myself, right before I was due for my yearly mammogram.
The tumor that I found, and that they biopsied, is 5 cm, but several other suspicious areas were found subsequently on an MRI. So a great deal of my left breast tissue is involved, and after my "team" (radiologists and breast oncology surgeon) discussed the facts, they suggested a mastectomy with reconstruction on the left side.
Additionally, because of older saline implants (a bad, post-divorce decision 16 yrs. ago), very dense breast tissue, and a suspicious mass that I can feel on the right side, after again discussing the options with my lady docs, I am having a dbl. mastectomy with reconstruction on May 6th. (The right side mass does not appear "highly" suspicious right now, according to the radiologist, and if I were interested in conserving that breast, they would biopsy it, but I'd just as soon they take them both and make me symmetrical, at least! She agreed that that's exactly what she would do if she were in my position.)
One of the reasons for my decision is that my surgeon told me that by getting rid of the breast tissue on the right side, I will not need to take any anti-estrogen meds. Also, for me, at 53, with a 27-yr-old daughter who has MS, my two adorable grandkids, and a 10-yr-old daughter at home (adopted from China 10 yrs. ago), I didn't want to have to worry about any more than I absolutely have to, and I wanted the least chance of re-occurence. My husband is totally supportive of my decision, as are pretty much all of the women I know, both breast cancer survivors and non-.
I love my plastic surgeon, who has a wonderful reputation in breast reconstruction. (I feel lucky to have an all-woman team to go through this with!) She will be doing my reconstruction with silicone implants placed under the pectoral muscles at the same time as the skin-conserving mastectomies. She claims that I don't have enough body fat to use for recon...I beg to differ, trust me!!! But she's the expert.
So here I am, with a little over two weeks to go. Since my surgery is May 6th, you and I will be going through this pretty much at the same time!! I am hoping for a smooth recovery and no big surprises on the final pathology report, but whatever happens I plan to don my pink armour and soldier on through this.
I look forward to hearing what your final decisions are. Whatever they may be, they will be YOUR decisions and right for YOU. One thing I have learned so far, for sure, is that when it comes to making decisions for your own body, you can listen to all the advice, read all the literature, and talk to all the doctors you want...but ultimately it is you that has to make that decision. And once you make it, be confident!
Big hugs,
Debi0 -
Hi Janet, Welcome and I am
Hi Janet, Welcome and I am glad you found us. I hope we can be helpful to you during this time.
I was diagnosed at 42 with a 1.5cm tumor, er/pr+, her2-, clear margins, clear nodes, stage 1, invasive ductal bc.
I am the 4th women in my family with bc, but I tested negative for BRCA1 and 2.
I had a lumpectomy, chemo(4 AC and 4 T), and radiation. That was 3 years ago and I am doing FINE:0) Like you, at first my knee-jerk reaction was to have both breasts removed but THANK GOD my surgeon educated me on the stats comparing mastectomy vs lumpectomy. I definitely did not want to lose my breast and I am super glad that I did not have the mastectomy.
Unless you have a very aggressive cancer and/or multi cancerous areas in one breast, it is my understanding that a lumpectomy is just as good as mastectomy.
So here I am with a strong family history and it was very appropriate for me to have a lumpectomy. I have no regrets what so ever. Think things through very carefully. You have to do what is comfortable. Keep in mind though, it serves absolutely no purpose to remove PERFECTLY HEALTHY BREAST TISSUE along with the tumor.0 -
No anti-estrogen..???Eil4186 said:Hi Janet, Welcome and I am
Hi Janet, Welcome and I am glad you found us. I hope we can be helpful to you during this time.
I was diagnosed at 42 with a 1.5cm tumor, er/pr+, her2-, clear margins, clear nodes, stage 1, invasive ductal bc.
I am the 4th women in my family with bc, but I tested negative for BRCA1 and 2.
I had a lumpectomy, chemo(4 AC and 4 T), and radiation. That was 3 years ago and I am doing FINE:0) Like you, at first my knee-jerk reaction was to have both breasts removed but THANK GOD my surgeon educated me on the stats comparing mastectomy vs lumpectomy. I definitely did not want to lose my breast and I am super glad that I did not have the mastectomy.
Unless you have a very aggressive cancer and/or multi cancerous areas in one breast, it is my understanding that a lumpectomy is just as good as mastectomy.
So here I am with a strong family history and it was very appropriate for me to have a lumpectomy. I have no regrets what so ever. Think things through very carefully. You have to do what is comfortable. Keep in mind though, it serves absolutely no purpose to remove PERFECTLY HEALTHY BREAST TISSUE along with the tumor.
Janet,
I find it interesting that you were told you wouldn't have to take anti-estrogen meds if you had bi-lateral mastectomies. Why ? I had bilateral mastectomies (due to multiple quadrant tumors on the R and abnormal lesions on the L- both sides extremely dense and unreadable on scans) and I am on Tamoxifen- I am ER+.
Does anyone have an answer to this???
Cheers, Susie0 -
Hi Susiesusieraph said:No anti-estrogen..???
Janet,
I find it interesting that you were told you wouldn't have to take anti-estrogen meds if you had bi-lateral mastectomies. Why ? I had bilateral mastectomies (due to multiple quadrant tumors on the R and abnormal lesions on the L- both sides extremely dense and unreadable on scans) and I am on Tamoxifen- I am ER+.
Does anyone have an answer to this???
Cheers, Susie
From what i know if you test estrogen pos. they give you anti-estrogen meds.
have a good day.
Jackie0
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