Just diagnosed

CultivateGratitude

Morning, I was just diagnosed with ILC on June 20. I am lucky that my tumor was small .7-1.5 cm and is T1N0M0. I have meet with my surgeon, general practitioner, plastic surgeon, and radiation oncologist. Tomorrow, I meet with the chemo doc and the surgeon again. I will need to have made my decision between a lumpectomy and a double mastectomy. While I know the decision is mine, I am curious what others have done in this situation. Any advice would be appreciate. Thanks! Beth

Moderators

CultivateGratitude while you wait for more members to respond, you may want to check out the main breastcancer.org site on information about Mastectomy vs. Lumpectomy.  

We hope this helps!

dlb823

CultivateGratitude, if you use the Search feature to the left and put in Lumpectomy vs. Mastectomy, it will pull up a recent thread by that name where several women weighed in on their choices, as well as an excellently laid-out rationale by BCO member, Beesie, that should be extremely helpful.  I'll bump that thread for you now, so that you can also find it under Active Topics, also to the left.

Good luck!  I personally chose a unilateral mx w/immediate Diep recon after starting off with a lumpectomy.  My best advice from my experience is to be sure you have a highly experienced breast (only) surgeon and a good MRI before deciding on which surgery is right for you.  My bio page explains more.   (((Hugs))), and glad you've found BCO, although I'm sorry you have reason to be here.      Deanna

Tinanicu

I was diagnosed with LCIS and DCIS and opted for a double mastectomy. My main reason was that I was young and was told at the time that I  had a 30% rate of recurrence. I have 2 young children with autism that need me to be around as long as possible to care for them. Also, I did not want radiation (comes with lumpectomy), tamoxifen, or a unilateral mastectomy because I felt reconstruction would be difficult to "match up" the two breasts and if I lost or gained weight, it would not be equal since I opted for implants.  Later, I found out that I also carry the BRCA2 mutation. That solidified my decision even further. After the mastectomy, pathology showed 1mm ILC as well. But, unfortunately, I have to take tamoxifen due to the ILC. I think it is a very personal decision honestly, and my situation was fairly easy to decide for the aforementioned reasons.

BTW, a mastectomy is no cake walk. I have a high tolerance for pain, and it has been a challenge. The reconstruction takes its toll too. Not sure about the lumpectomy route.

Good luck!

gavinsgrandma

Hi Beth, glad to meet you but sorry it was here, I was DX with ILC on 5/31/13 and I am having BLM with reconstruction this Thursday not an easy choice but you do need to do your own research and come up with a desion that feels right for you!!! ILC is a sneaky cancer and has a tendency to be B/L and it is hard to detect on mammo. I just want this monster out and I am comfortable with my choice in order to eliminate any chance of reoccurrence. Please keep us posted so that we can follow your journey.



Shary🌻

Anonymous

Cultivate, welcome to the club no one wants to join.

I had it all as you can see from my status and tx. below. Add tamoxifen to the mix as of a year ago, too.  I wanted everything I could get from my medical team to tx it, since I remember someone posting on this discussion board long ago that oftentimes you only get one chance. My body is strong and I knew I could handle it all.  I have very dense breasts and didn't want to worry about another tumor hiding in my breast tissue as mine did (ILC has a tendency to hide from scans), even after 5 "clear" regular mammos over 5 years. As well, positive nodes made a big difference in my choice of agressive treatment as well.

I am relieved I can look back and say I did everything that was offered to me to protect myself.  Ultimately, you weigh your options, gather credible information, examine your gut and march forward.

Claire

IllinoisNancy

I would recommend a BLM with immediate reconstruction.  Don't make the same mistake that I did with a lumpectomy and radiation only to need more surgery within a couple of years.  It is very hard to heal after skin has been radiated.  ILC is sneaky no matter what the size.  I wish I could go back to 2006 and do things over again.  Good luck with your decision!

Nancy

momand2kids

Hi

I wanted to weigh in on lumpectomies... I had ILC-- my surgeon told me I could have a mastectomy but that she did not see any medical reason to do that.... I decided to have the lumpectomy and figure out what we were dealing with..... I ended up with the lumpectomy, no nodes, 4 rounds of chemo because of an oncotype score in the gray range and radiation.  It was the right decision for me and I feel like I did everything I could to eradicate it.  There are never any guarantees about any of this, so you have to do what feels right.  If mine had been more aggressive or there were other reasons to do so, I would have had an mx...but at the time, it did not feel necessary.  I am almost 5 years out, feel great and am happy with that decision.  Do search under Beesie's name--she has a wonderful thread about this....

good luck

vlnrph

Keep in mind that ILC lesions usually appear smaller on scans (even MRI) than they really are due to their "Indian file" growth pattern and it can be hard to get clean margins. The quadrant/location of the incision will also be a consideration - for my inner upper spot, a good cosmetic result would have been difficult to achieve. The deciding factor was the discovery of an IDC tumor under my arm making mastectomy the best option.

summergal

Hi - just a question (I am stage 1, ER+/PR+, HER2- for ILC on LB and IDC on RB as of DX 6/21/13) - some of you mentioned having made your surgical decision based on postive lymph involvement.  But how do you know if you have positive LN if they are testing them at the same time as your surgery, as my dr. has told me they will do with me?  Were you able to have yours tested before your lumpectomy or mastectomy so that you could use that information to help you make your decision?  Thanks. 

sgreenarch

Dear Beth,

Just want to tell you first that I really like your name, cultivate gratitude. If you've already got it together enough to make that your handle, you'll be fine:) Getting your head in a good place will help you a great deal.

My advice would be to get a number of opinions and find drs you feel you can really talk to and trust. You'll be faced with some decisions that are grey, could be ok either way, and in many ways these are the hardest decisions. A lot depends on your personal make up and tolerance for risk, pain, etc.

My ILC was found on a routine mammogram. Tumor was less than 2 cm so I had the choice between lumpectomy w radiation and mastectomy w no radiation. My husband is a plastic surgeon and he and a colleague, a breast surgeon, told me not to react instinctively (rip the entire enemy breast off with my bare hands that minute.) That though it's counter intuitive, survival rates (not the same as recurrence rates) are the same lumpectomy w rads vs mastectomy. That there is validity to trying to keep a breast. I heard them but deep down still wanted that mastectomy, though I didn't voice this, keeping all options open for my own consideration. An MRI two days later found a second tiny tumor, far from the first, and this made breast conservation much more challenging (would have been left w Swiss cheese, very deformed breast.) I had the unimx (by the way, post op path showed exactly what pre op imaging predicted. I am telling you this because some women are against lumpectomies worrying that there's more in there than can be seen on MRIs. I didn't have this experience.) A mastectomy isn't easy to get used to, (though i found the actual surgical procedure not difficult) but I'm grateful for not having to have had rads. I haven't yet done reconstruction (a bit ironic given that it's hubby's business.) thank god, he's loving and accepting, and I just needed to take a break from medical procedures and think straight for a bit. May yet do it, maybe not. I'm actually ok w prostheses; I swim a lot and was worried that each surgical option might compromise this, or just might not like any recon options enough to go through w it. Anyway, sorry to ramble. Hope this is helpful. Hang in,

Shari

mary625

Summergal: I had a big ole 2 cm lymph node that was palpable at diagnosis, so I knew that I was having all my lymph nodes out from the get-go. They biopsied it by needle and it was of course cancer. I guess the only good side of it was that I knew what the extent of my surgery was going to be before I went in.

melmcbee

Summergal, I had a bmx with a sentinel node bx. If this is the test that you are talking about let me explain that my "frozen section" that was tested while I was having surgery came back negative for cancer. They closed me up and the final pathology came back Positive for cancer. Lobular also doesnt test well on this test. I had to go. back a month later and get an axillary dissection and the final path from that was 8 positive nodes out of 15. The one thing I have learned is no matter how much planning you put in you may still have surprises.

Good luck. and let us know how it goes.



Cultivate, I chose bmx cause my tumors were too big for lumpexctomy and I didnt trust mammos to follow the other breast. I still had to have chemo and radiation. Healing hugsand please let us know how you are doing