Share with others who have ER-/PR-/HER2- breast cancer.
Posted on: Mar 5, 2012 11:59AM
I am making myself crazy, as to what decision to make. I am 33 (34 in 6 days) and was just diagnosed on February 15, 2012 and need some advice. I have TN IDC that is approximately 1.9 cm. The MRI shows that there are some small tumors around the original one. I don't know if lymph nodes are clear as I have not had surgery yet. Any suggestions on Lumpectomy or Mastectomy? Thank you all :)
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Mar 6, 2012 07:00AM Luah wrote:
See what your breast surgeon recommends - and get a second opinion if you want. Lx and Mx have been shown to be equivalent in long-term suvival. With Lx you will need radiation for sure. With Mx, maybe not... depends on tunour size, location, node status, etc. I think there is some very good information right on this site - check the nav bar at the very top. You might also search the discussion boards too, as many have faced this trying decision and posted about it.
Mar 6, 2012 11:00AM mitymuffin wrote:Djay, can you get genetic testing? I think at your age, the genetic testing is particularly relevant and may influence whether you have a masectomy or lumpectomy.
Mar 6, 2012 06:46PM Titan wrote:
djay..there is so much information on this site..but at the same time you may be overwhelmed by all of it......I'm alot older than you (49 at diagnosis)..but I chose a lumpectomy and am very happy with it...there are so many factors involved...w a masectomy you have the longer recovery time plus the recon..with a lumpectomy you are pretty much good to go shortly after...
You just want to be sure that with a lump that you get excellent margins...and it also depends on how much they have to take out...you may not be pleased with it cosmetically... your breast surgeon will give you a good idea...trust them....
Mar 9, 2012 08:08PM meandmimi wrote:
I'm in the same boat...and our circumstances are similar...I'm older, 46, was diagnosed this past November. They did an MRI that showed 2 enlarged mynph nodes, so I had a lymph node biopsy that showed they were positive for cancer cells. For that reason, they had me do chemo first. Had ultra sound last week that shows very good results. Tumor is gone! Anyway, I am about to get surgery and have been having the same debate. I was also going to recommend the genetic testing. I had it done and should have results Monday. That will help decide for sure. But, even if it is negative, I am leaning toward double mx with recon...because I have small breasts, dense breasts and fear the amount of tissue removed would be significant, plus radiation would be recon very difficult if I needed to do that later. I really don;t want to go through the mx and recon, but it may be the better of the two choices for me. Good luck with your choice. When do you have surgery? Mine is scheduled for the 21st.
Mar 10, 2012 02:16PM djay0270 wrote:
I did have the Genetic Testing done and I was supposed to get the results back on Friday, which did not happen because my Insurance Company did not approve until Tuesday, and the test takes about 2 weeks, so now I have to wait another 2 weeks. I do have a scheduled date of April 10th for a double mastectomy, with reconstruction at the same time. I think my fear of the mastectomy is that they can't get all the breast tissue out, which is impossible, so if I do get the cancer back then there is not much tissue left and it will go elsewhwere faster. (Does that make sense) maybe Im just thinking crazy? If the testing comes back positive then I will definitly do the double mx., but if it comes back negative, I don't know what to do. I also have small dense breasts. I wonder why my doctor didnt order an MRI of my nodes? I had one of my breasts. Did you have a PET Scan? My insurance company would not approve mine to be done. (Go figure) I bet they would if it were their mother or sister !!
Mar 12, 2012 07:54PM Be_Positive wrote:
My situation is very similar to yours. I was diagnosed at age 33 on December 5th, 2011 with stage 3 TN breast cancer. My tumour was 3.5 cm with possible lymph node involvement, but they weren't able to tell for sure as I am having chemo first. I am currently halfway done chemo, then BMX with reconstruction, then radiation.
I briefly met with my surgeon and she recommended having both breasts removed and I agreed. I realize that it can come back somewhere else in my body or even in the small amount of remaining tissue, but I will feel much better having both removed. It will reduce my worry and will also make reconstruction easier. My surgeon also told me that having cancer in one breast ups your risk to have cancer in the other breast if it is not removed. Due to my young age, I feel that having both removed is best for me.
Hope this helps! Feel free to message me if you have other questions or just want to talk.
Mar 19, 2012 10:26AM waxgirl2000 wrote:
Wow. I'm so glad I found this forum, and this thread. I am in the same boat! I just had a lx a week ago, and now considering a double mx bc I had unclear margins. I am triple negative and even though there isn't a lot of data to support a double mx, and bc I'm BRCA-, I'm thinking its overkill to have the double mx. But for my peace of mind...it would be worth it, and knowing I did everything I could makes a difference too. With triple neg, it has a very high recurrance rate, and my surgeon is more concerned with that, than anything in my breast happening again.
I am scheduled to start radiation soon, when my incisions heal. I had significant tumors in my axilla, but after chemo (which ended about a month or so ago), they went away! The path report confirmed neg nodes, but in the breast they still ended up removing a 2cm mass, which neither the onc. or surgeon could feel. We thought I was going to have a complete pathologic repsonse, but alas....With the margins clear less than 1mm....I'm not feeling too good about "just letting radiation get the rest."
Can anyone respond to this? I am also driving myself crazy....using up a lot of my day researching answers that I might only find within myself....even if there isn't "scientific data" validating me to do this.
Mar 19, 2012 02:25PM Luah wrote:
My advice would be to talk to your surgeon about whether the margin can be improved - either with a re-excision or a MX. I had a very close 1 mm margin too, but it was almost at the chest wall, and even a Mx wouldn't have made a difference.
Surgeons (actually all of us) are less concerned with stuff happening in the breast than distant recurrence ... because as my surgeon said: No one dies of cancer in the breast. True. The question is, whether or not a Mx or a BMX would reduce your risk...
Has your onc said anything about additional chemo? Sometimes that's an option when there hasn't been a complete pCR in the neoadjuvent setting. However, many of us have surgery first, then chemo, and have no way of knowing whether the chemo "got" it all or not - and that's the end of our treatment anyway. So no right or wrong here.
I know what's it like to research something to death - at some point, line up your questions, and go talk to your docs and see what they say. At the end of the day, you have to feel comfortable with whatever you decide.
Apr 22, 2012 06:31AM - edited Apr 22, 2012 06:32AM by Clowngirl
I am having a double mastectomy. I am TN 2A 2, invasive papilloma, 3.4 cm and infiltration present.
Because they want to do radiation I am not a candidate for implants. So they want to do a 7 hour operation move fat from my belly into my breast area and it involves moving an artery from there into my breast area to give it a blood supply. I'm scared. How many have had this? How many of you have decided to not get reconstruction? I am so confused.
Apr 22, 2012 07:09PM BikerLee wrote:
Just a few thoughts.
One - can you have chemo before surgery? Then, you will be able to tell whether your tumor responded to the chemotherapy. This is becoming more and more common - chemo first - surgery second.
Two - flat's pretty awesome.... Reconstruction is an option... but so is going and staying flat.
I understand what you're saying about the double... but htink of it as much much less breat tissue that can "go wrong" - so to speak... Does that help?
My story - TNBC diagnosis July... August chemo... Feb double mastectomy... No regrets on the surgery choice.... Happily - complete pathological response. I was also in a clinical trial called ISPY2.
Good luck - this is a difficult time, and I wish you peace around whatever decision you make.
Apr 24, 2012 11:03AM Karen3 wrote:
I have just had a bilateral mast as I had another BC diagnosis in the opposite breast less than two years from the removal of my first invasive TN tumour. Studies show that if you have BRCA1 (many BRCA1 mutations are TN) then you have a much higher - 25% chance - of a contralateral breast cancer. I have a BRCA1 mutation of 'unknown significance' but my Onc is treating me now as full BRCA1. I am also taking part in the BRCA studies in the UK. Is there any chance you can have the gene test?
I thought Bikerlee made a good point too about neoadjuvant chemo (chemo before surgery). In my case, I had nil response to chemo and had a lumpectomy on 4th jan 2010 for my first tumour. Maybe at that point I should have had a bilateral mast. But also remember that even if you have a lumpectomy now - you can always request to have a mastectomy or bilateral mast at a later date.
It's a difficult decision. Also, although women with one BC are a risk from another diagnosis in the opposite breast - the odds are pretty low. Unless you have a BRCA1 mutation, the chances are that your other breast will be fine.
Hope some of this helps you! All the best in your decision.
Apr 26, 2012 05:09AM djay0270 wrote:
It's been a while since I posted, so here I go.... I went in April 10th for a double mastectomy, with the advice of my surgeon. He said, he recommended that because of my age and type of cancer it is. No Lymph Node involvement. At the time of surgery they placed expanders for reconstruction. I think they are worse than the surgery. And after thinking long and hard about it, I know it was the right decision for me. The bone scan came back with something abnormal in my right arm, which has to be biopsied. The radiologist cannot rule out cancer and he also can't say it is. They don't know. My doctors don't seem to concerned with it though. They say lets get through this part first. Has anyone every heard of metastasis without lymph node involvement? I will now have to go back in today for another surgery to remove some dead skin from both sides (can't be as bad as the mastectomy right??) I will start chemo in a few weeks. I am not looking forward to that, but if it saves my life than that is whats important ! I feel a little better about the whole situation. I stopped feeling sorry for myself the minute I thought about innocent children dealing with cancer everyday !!!
Apr 26, 2012 06:15AM Luah wrote:
Djay: Unfortunately mets can occur without detection of lymph node involvement. However, an abnormality on a bone scan can be many, many other things, so please try not to worry until you have more information.
Apr 30, 2012 08:52AM tallguysmom wrote:I too am going crazy with trying to decide what to do. I felt everything happened so fast for me, I didn't feel I had a good enough time to grasp a double mastectomy. This all happened within 2 or 3 weeks. I found a lump, had the mammo, had biopsy 2 days later, and was told I had BC. I didn't have time to breathe. I am now finishing up on my chemo after my lumpectomy on Nov. 1 2011. I have until May 16 to choose double mastectomy or radiation. I am leaning toward the double mastectomy. I was just wondering if anyone has any advice on what to do to help this decision any easier to make? No breast cancer in my family and my mother and all females in my family have passed away. Please help me.
May 1, 2012 03:02AM Moderators wrote:
tallguysmom, there is an article on the main Breastcancer.org site called Mastectomy vs. Lumpectomy that goes through the reasons for choosing one or the other. Until more members post with their experiences, that might be a good place to help organize your options.
May 22, 2012 11:00AM deb57 wrote:
Im just curious to why if you dont have cancer in the other breast and your not genetic pos. you have a BMX? I was told there is a small risk it would come in the second breast. One is better than none? I know it is all different per person but with the reconstruction for the one breast and or prothesis it seems to me it would be more traumatic to loose both. Im just asking because I was thinking that why remove more than necessary/? Maybe convince me to have a BMX and Im missiing something here..Bless all of you for the sadness and decisions we have to make...to save our lives.
May 22, 2012 03:23PM - edited May 22, 2012 03:32PM by Jen78
I leaned toward a BMX from day 1. I was 33 years old and wanted to do the most aggressive things possible to beat this. After talking to my surgeon, the most important thing for my peace of mind was removing that lump and I had surgery 4 days after getting my dx.
I decided to start with a lumpectomy knowing that I could always go back and have more surgery. The lumpectomy was successful - smallish lump, good margins, negative lymph nodes. I started chemo and about halfway through, decided that the BMX felt right to me. Everyone who examined my breasts couldn't believe I found my own lump because of how dense my breasts were. That made me scared that if it were to come back on the other side, I might not get lucky enough to catch it early again. Personally, I just couldn't handle the worry that went along with that possibility. 6 weeks after completing chemo, I went in and had a nipple and skin sparing BMX with lat flap reconstruction. I'm 7 weeks out from that now and even though I've had some bumps in the road with my recovery, I don't regret the BMX for a second. It's given me more peace of mind than I had otherwise.
Statistically, my outcome was likely to be the same regardless of what choice I made, but for my own personal comfort, the BMX was right for me. I think everyone has to weigh their options and know what will make them feel best. It's a crappy decision to have to make, but I think that once you do, you'll feel good about it because you'll have your plan in place and you'll feel in control.
I was BRCA -, no family history.
Jun 3, 2012 12:41PM kane744 wrote:
Four years ago, i had cancer in the right breast and opted for lumpectomy, chemo, rads, even though BS advised for mastectomy. Here I am in the present, recently diagnosed in my other breast. Same type cancer, same TN. Now am having bilateral mastectomy. I know we're not supposed to do the woulda, shoulda, coulda dance, but I did. Had I had it to do all over again, I'd have fed my girls to the fish! I am confident I can fight this battle again but sure wish I didn't have to!! Good luck making this terrible decision.
Jun 4, 2012 06:17AM Luah wrote:
Kane, sorry you have to do this crap all over again. If you don't mind sharing, why did your first BS recommend a Mx? He/she didn't say a BMx, right?
Jun 4, 2012 03:38PM kane744 wrote:
Luah, at some point during the first cancer, I asked my BS what he would advise his wife to do in my situation. He said to have BMX and that although it is my decision and lumpectomy is one of my options, BMX would be another option to consider. I didn't consider it then because I wanted to save my breast. Now it will happen and I truthfully just want it over with. Perhaps if I were younger, I would have considered recon, but I just want to heal as quickly as possible, get through my treatment, and on with the rest of my life. Today I went to the local post mastectomy store to get my post surgery cami. She showed me all the various foobs available and it was amazing. I'll want to go down a couple cup sizes for lightness and can honestly see myself going flat quite a bit. I'm from the "burn your bra" generation!
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