newly diagnosed and completely overwhelmed

gingert

On 9/3/08 I was diagnosed with stage II gradeI invasive ductal carcinoma. Tumor was 2.1cm.
Yesterday I had a lumpectomy with sentinel node biopsy. I have a folllowup appt with the surgeon on 9/22 to find out if the margins were clear and whether nodes were positive or negative.
When the surgeon first told me it was cancer, my first instinct was to have a mastectomy; the surgeon talked me out of it saying he thought a lumpectomy would be good enough. I am now having second thoughts, I have been reading about rates of recurrence, and reduced odds of survival with a recurrence. I am far more worried about surviving to see my grandchildren grow up than what I look like. Does anyone have any thoughts or figures to help me figure this out? My breast counselor said most women in this situation feel the same way, and if it would give me more peace of mind that I should just go back and tell the surgeon I changed my mind and want the mastectomy......HELP
gingert

Derbygirl

Newly diagnosed
I was diagnosed in June with Stage 1 invasive bc and the mass was less than 1 cm. Sentinel node biopsy was negative. I chose to have a lumpectomy because the breast cancer surgeon told me and I read that a lumpectomy and radiation have the same results as mastectomy. After surgery you will see an oncologist for additional treatment (hormonal therapy, chemo, radiation) to reduce your risk of recurrence. Continue to research your options and make sure that you have a surgeon that you trust. It's a personal choice and don't let anyone talk you into one way or the other. Good luck.

gingert

Derbygirl said:

Newly diagnosed
I was diagnosed in June with Stage 1 invasive bc and the mass was less than 1 cm. Sentinel node biopsy was negative. I chose to have a lumpectomy because the breast cancer surgeon told me and I read that a lumpectomy and radiation have the same results as mastectomy. After surgery you will see an oncologist for additional treatment (hormonal therapy, chemo, radiation) to reduce your risk of recurrence. Continue to research your options and make sure that you have a surgeon that you trust. It's a personal choice and don't let anyone talk you into one way or the other. Good luck.

newly diagnosed
Thank you derbygirl. I really do trust my surgeon, but after reading about the odds of recurrence, I am just not sure that I want to live the rest of my life afraid it is coming back. I will continue researching, I have 10 days before I see the dr again. The breast counselor assured me also there was no 'expiration date" for me to change my mind on treatment. Thank you for your input!
gingert

Joycelouise

gingert said:

newly diagnosed
Thank you derbygirl. I really do trust my surgeon, but after reading about the odds of recurrence, I am just not sure that I want to live the rest of my life afraid it is coming back. I will continue researching, I have 10 days before I see the dr again. The breast counselor assured me also there was no 'expiration date" for me to change my mind on treatment. Thank you for your input!
gingert

There is so much to learn
There is so much to learn and digest. There are other factors in your DX that you will need to look at and your upcoming appt. with your surgeon will give you a chance to ask questions even as he educates you further. The problem with recurrance is that it can happen even after a mas., at the scar line. Eventually, you will come to the best decision, but there will never be a one hundred percent garauntee. But, of course, any "healthy" woman walking the streets does not have a garauntee either! Your surgeon will tell you things about your DX like whether or not you can benefit from certain drugs that are only used for specific characteristics of your tumor. There may be more safeguards than just surgery that will help you feel more in control of your health. You are very wise to continue searching and know that you can make the decision at any time. Be a little careful about the "survival" charts. They look so authoritative, but there are many factors not obvious in the information. Like newer treatments. The longer the projection is, the more out of date the treatment the women received all those years ago must necessarily be.
Be kind to yourself during this time. I believe that you will come to a balance. I have (for the most part!). This site has helped me beyond words. A warm welcome to you. Let us help. You can ask or write anything and know that someone here will understand perfectly, and the rest of us will understand pretty well! There are women here with an amazing grasp of the science who will help you and women here with an amazing talent for perspective, humor and encouragement. love, Joyce

gingert

Joyce,
Thank you for the
Joyce,
Thank you for the encouragement. I have been researching all morning, which has just given me more questions to ask. I am writing them all down, and when I see the dr on the 22nd he better be prepared! I will have a huge list for him by then
thanks again.
gingert

mgm42

Lumpectomy vs. Mastectomy
I was dx with Stage 1 invasive ductal carcinoma back in November, 2007. My tumor was 1.7 cm. I had a lumpectomy and my margins were clear and there was no node involvement. My surgeon told me that a lumpectomy along with radiation was as effective as a mastectomy. Hence my decision. That being said, I did go one step farther by having an Oncotype test done on my tumor tissue. It was done as part of a clinical trial (The TailoRx). That test revealed that I had a 26% chance of recurrence. Therefore, chemo therapy along with 5 years of Arimidex in addition to the radiation was recommended for me. By following this course of combined therpaies, my chances of recurrence were reduced to 15%. That drop of 11 percentage points is statistically significant. It puts me on par with all of the other women in the U.S. who haven't had breast cancer. If, someday, I should be in that 15% and have a recurrence, my option at that time will most likely be mastectomy. There are no guarantees. Joyce is 100% correct. Nothing in life carries any guarantees. Keep researching and I wish you all of the best. I know you are struggling to make the best decision for yourself. I'm sure you will - knowledge is your weapon - keep acquiring as much knowledge as you can. Flood your doctor with questions and don't leave her/his office until you get answers. That's what I did. Take care of yourself. Hang in there. Hugs, Marilynn

zahalene

It's all good
Ginger, all the advice you have received here is right on the money. These ladies are on top of the latest developments and know their stuff.
I would like to offer another slant, just so you have something for comparison.
I am a 22 year breast cancer survivor. I had one radical mastectomy in 1886 and another in 1988. Both followed by chemo and radiation. I want to reassure you about mastectomies in case that is what you decide upon. I have been 'breastless' (chose not to have recon) for a long time now and do not find it to be an issue at all as far as decreasing my quality of life in any way. Yes, I have some permanent damage but I have learned to deal with it just like I deal with my arthritis and other issues of being 'of a certain age' (60). Just don't fear mastectomies so much that you opt out of that avenue if it looks like the 'best medicine' in your case.

Eil4186

If there is only one tumor
If there is only one tumor in the breast, it does no good to remove perfectly healthy breast tissue along with the tumor. If the surgeon can get clear margins(even on a second try)and your nodes are ok, then many years of research shows that radiation/chemo will give you just as good a long term prognosis as a mastectomy. Period. When I was diagnosed I felt the same way----take it off! But my surgeon took the time to explain the research and thankfully helped me to see that I could safely keep my breast. I am so happy that I had the lumpectomy. I was very upset at the thought of losing part of my body. A mastectomy would have been devastating for me emotionally. Back in the day everyone had mast. but now it just is not always necessary and I have read that many women still have them because they are too frightened not to. It does not have to be that way.

survivor51

Another point
Hey Sweetie,
I had cancer in both breast and had a double mastectomy March 07. Didn't need radiation since nothing was left to radiate. I did have chemo and will be on arimidex for 5 years. If the margins come back and you decide to go further, I have had reconstruction and I might add that my new girls are magnificiant. Having reconstruction is a personal decision but for me it has been great to not look in the mirror and remember. My husband even stated that they feel like my old ones. I'll have the nipple reconstruction in a few weeks. For me, it has been a great decision. The chemo was not as bad as when my mom had chemo. They have improved with the method so much and yes my hair came back beautiful and curly. I never have to curl it or anything. I shake and go. Even with a mastectomy, you will wonder....will it come back...but with time, it get better and you just don't dwell on it. This is a roller coaster ride and you will have ups and downs. Keep writing on the message board and remember, there are no dumb questions. All questions help all of us either by informing us or giving us a chance to help others which always comes back to help ourselves. Take care and remember we are here. Angela

Joycelouise

survivor51 said:

Another point
Hey Sweetie,
I had cancer in both breast and had a double mastectomy March 07. Didn't need radiation since nothing was left to radiate. I did have chemo and will be on arimidex for 5 years. If the margins come back and you decide to go further, I have had reconstruction and I might add that my new girls are magnificiant. Having reconstruction is a personal decision but for me it has been great to not look in the mirror and remember. My husband even stated that they feel like my old ones. I'll have the nipple reconstruction in a few weeks. For me, it has been a great decision. The chemo was not as bad as when my mom had chemo. They have improved with the method so much and yes my hair came back beautiful and curly. I never have to curl it or anything. I shake and go. Even with a mastectomy, you will wonder....will it come back...but with time, it get better and you just don't dwell on it. This is a roller coaster ride and you will have ups and downs. Keep writing on the message board and remember, there are no dumb questions. All questions help all of us either by informing us or giving us a chance to help others which always comes back to help ourselves. Take care and remember we are here. Angela

Just one comment. Though
Just one comment. Though often radiation can be avoided with a mas., I had a mas. and still had radiation (stage 2, 2 nodes, pretty big tumor). They radiated at four sites, the breast bone, the breast, under the arm and the lymph nodes in the neck. At the end they did just the scar for a week. It was all precautionary and I was glad they did it. Some of the aggresive treatment I have opted for was not as much for insurance as peace of mind. When I get worried I review all the things that I have done to prevent recurrance. There is one downside, however. Some treatments also carry a risk, so that must be weighed too.
Wow, such a lot to think about, huh? It may seem overwhelming at first, but really and truly, day by day, one gets through this and out the other end. I wish you the courage to face this and also the courage to turn away from it - sometimes you just need to give yourself a recess! love, Joyce

phoenixrising

Hi Gingert
This whole process is indeed very overwhelming. I second guessed every move I made. I still wonder about some of them. My tumor was 2.2cm Stage 2B Grade 3 with 3/6 sentinels positive.

I was offered a lumpectomy with rads but decided on the mastectomy to avoid the rads.

It was my gut feeling to have the whole thing removed. Time will tell if that meant anything or not. I have read and heard in many reputable places that the lumpectomy with rads gives the same success rate as a mastectomy. This is good news and I have not read anything up to date that claims a mastectomy success rate is higher than lump/rads. Check the dates on your info.

Try not to agonize about your past decisions. It will drive you crazy with worry. Soon you'll know more and perhaps breathe a little easier. Good luck to you.

hugs and prayers
jan

cabbott

Mastectomy vs. Lumpectomy
If your spot of cancer was in one discrete spot, a lumpectomy plus radiation is statistically the same as having a mastectomy. Actually, when I looked at the research, it amazed me to find that lumpectomy plus radiation was a tiny bit SUPERIOR to mastectomy though the researchers cautioned that the difference was not statistically significant. I had cancer in at least two spots with nasty margins after a lumpectomy and biopsy of the two spots and I'm built small. For me a mastectomy was the best choice. But after reading the research, I understood that it was solely because of having cancer in more than one spot and not being able to do two lumpectomies in a cosmetically acceptable fashion with my tiny breast that was the issue. Survival was never the issue. Removing healthy tissue will not prolong your survival. If you have a lumpectomy and a tiny bit of cancer in another part of your breast is missed by surgery and radiation, you can always go back for another surgery. If you are large breasted and the spot is far enough from the first one, it may even be possible to do another lumpectomy with radiation! Cancer in the breast rarely affects your survival. You would have to ignore the lump for years and years for it to grow large enough to kill you. This rarely happens in the United States. It is when it travels to other parts of your body and sets up camp in critical organs that your survival is affected. The sentinel node operation gives the doctors an idea of how aggressive your cancer is and what they should recommend after surgery. If they believe the cancer is aggressive based on positive nodes at the time of the operation or micrometasteses in the nodes found after the operation, they will recommend chemo. Sometimes other signs point to the need for chemo (large tumor size, triple negative status, stuff like that). But while more aggressive cancer may need more aggressive medicines or chemo, that doesn't point to the need for more aggressive surgery. An unnecessary mastectomy is sort of like removing any other healthy tissue in your body in hopes that it would help. You wouldn't consider having a foot removed that was perfectly healthy just to keep a spot in your breast from developing! The surgeon checks the margins on all sides of the tissue removed to make sure that it is all healthy. Getting a clean margin is very important because it means that the rest of the breast is unlikely to have any cancer left in it. Radiation helps take care of any stray cells that might be lurking around. Rest assured that discrete lumps can almost always be removed successfully with a lumpectomy. If you follow that with radiation you are as safe as you would have been with a mastectomy. We are all worried about the beast coming back whether we have a lumpectomy or mastectomy. The doctor asked me once if I was doing breast checks. I nodded yes but knew that the real answer was "daily!" Finally at year 4 I made myself go back to once a month. Now I'm coming up on year 6. At year one there was no way you could have told me that I would make it for even two years. I was a wreck. Talking to other survivors and reading the research helped. You can go back and have a mastectomy if it helps you sleep, but rest assured that a lumpectomy plus radiation will be as good as a mastectomy. The research on that much is conclusive.

gingert

I want to thank all of you
I want to thank all of you for your support and help, you have all been so much help! Yesterday I researched most of the day, and read and reread all of your posts. I got to the point yesterday afternoon when I finally just had to turn off the computer and take a break. That and I had to admit I wasn't super mom, and was wiped out from surgery, and ended up taking a long nap. So this morning I feel a little better, like I have some options after reading everything you wonderful ladies have sharerd. I just can't tell you how much I appreciate you all. I will continue to research this week, and add to my list of questions for the surgeon, when I see him again on the 22nd I plan to be better prepared than I was last week. I feel like at least with the lumpectomy the tumor is out and gone and I have some time to take a deep breath and make decisions. Thank you all so much! gingert

ohilly

gingert said:

I want to thank all of you
I want to thank all of you for your support and help, you have all been so much help! Yesterday I researched most of the day, and read and reread all of your posts. I got to the point yesterday afternoon when I finally just had to turn off the computer and take a break. That and I had to admit I wasn't super mom, and was wiped out from surgery, and ended up taking a long nap. So this morning I feel a little better, like I have some options after reading everything you wonderful ladies have sharerd. I just can't tell you how much I appreciate you all. I will continue to research this week, and add to my list of questions for the surgeon, when I see him again on the 22nd I plan to be better prepared than I was last week. I feel like at least with the lumpectomy the tumor is out and gone and I have some time to take a deep breath and make decisions. Thank you all so much! gingert

my thoughts
I was diagnosed with Stage I invasive intraductal back in January (I have since found out I am BRCA 1 and will have a preventive mastectomy on the other breast next week: I already had a mastectomy on my cancerous breast). The facts are that the survival rates are not different with a mastectomy vs. a lumpectomy: however, I will tell you what biased me in favor of getting the mastectomy. First of all, although the SURVIVAL rates are not different, it is also true that there is a slightly higher chance of getting a local recurrence with the lumpectomy. Keep in mind that what can kill you is not a local recurrence, but the cancer spreading to other organs. However, if it comes back locally, do you really want to go thru all the chemo, radiation, losing your hair, etc. all over again? Also, I am by nature a non-trusting person: although the current research may show that the survival rates are the same, there are many examples in medicine of new research reversing the prior knowledge. It just makes logical sense to me that the less breast tissue you have, the less chance you have of getting cancer in your body and having it spread. I, personally, am very glad I had a mastectomy and have no regrets. I had immediate lat flap reconstruction, and honestly, it is not that bad. I found that there is tremendous pressure from doctors who do not want to 'mutilate' women to have a lumpectomy, but it's not them who has to live with the fear of cancer returning.

Good luck with whatever decision you make,

Sincerely,

Ohilly

kew

It's a tough call...
I was at the stage you were at last February and went with the lumpectomy. I was stage 1 with a random cancer cell in one lymph node, so we treated it aggressively (also due to my relatively young age of 48). So I had 8 treatments of chemotherapy and 33 radiation treatments.

What surprised me through it all was how much say I got to have. I didn't want to decide whether I needed a full mastectomy or a lumpectomy. I wanted them to tell me what I needed. And so much new information is thrown at you so quickly. I wish I had the genetic testing done prior to any diagnosis, that would have had an impact on my decisions. So I'm going to have ethat testing done now so that I may have a better idea of what to do if this ever returns.

Taking a nap definitely does NOT make you a bad mom. You are stressed over this frightening diagnosis, your body is recovering from surgery and anesthesia. If you're tired, rest!!! When your friends ask what they can do, tell them something. (Make a meal, clean your bathroom, watch a movie with you). They really want to help and you're denying them if you don't let them do something!!!

My advice, if it was me, is to not rush back into another surgery if your margins are good. Do the adjuvant therapy. Then go for the genetic testing before you make any more decisions.

You are overwhelmed. But you can do this. This is a real chance to "grow your faith." And it's a chance to realize how we women are so good at loving and taking care of each other. Bosom buddies...

dbs1673

no right answer
I agree that there is so much to think about. I have had 3 years of surgical biopsies that have shown atypia hyperplasia. For me that meant the "not now" cancer but left me to think then "when". My mother had breast cancer. She would not agree to the BRCA 1-2 testing but I did it on my own. It came back negative and I took tamaxifin for 3 years. My "when" came in May only after my Dr appealed the insurance company twice to allow me an MRI. There were more biopsies on both breasts with DCIS in the right. I am/was built with small breasts. The Dr said with my size and shape he'd recommend the mast. I already had a number of scars. The thought of continuing to deal with the "when" on my other breast was too great so I had a double mast in June. I had expanders put in at the time of the surgery. I thought that would be all but the final pathology had small margins so radiation is needed. My decisions were made on the fact that none of this is a dress rehearsal..it's the real thing; let's get it right. I do not want to live with regrets and while the recovery leaves me feeling depressed, the decisions I made do not. I know I made the right choices for me, I know you'll make the right choices for you.

macygirl

I was diagnosised in July
I was diagnosised in July while breastfeeding my 10 month old. It turns your world upside down! I feel like I have become a cancer expert. I think the most difficult part was everyone telling you what you should do. My advice, listen to your doctor - get a second opinion if you want - but do whats right for you. I had a lumpectomy and they could not guarantee clear margins since the tumor was larger than they thought. I ended up having a mastecomy which showed I had a second tumor that went undetected (probably due to my breast being so dense). You can't change the fact that you have breast cancer - all you can do is take it one day at a time. Even though breast cancer really sucks - it has already taught me that I should not take life for granted. I just started chemo on Wednesday - and I know I have a long way to go with no guarantees. I was also told to take your medications - this was (and still is hard) because I am not a pill popper. And, please when people offer to help you - let them!!! Be strong, lean on those that love you when you need to, and lets get through this one day at a time - together!!

gingert

update
I want to thank everyone for their help and encouragement. My surgeon called me yesterday, he got the pathology results and didn't want me to have to wait til our appt next Monday. Some good news... the nodes were clear! However he said could not get a clear margin, it goes right into the skin. So he will meet with me Monday, and set me up with the oncologists for chemo and radiation. I feel like I just won the lottery..just knowing the nodes were clear was such a relief. So now, I am going to focus on getting through this one day at a time! Thank you all so much,
gingert