Invasive Lobular Carcinoma

My cancer was lobular; and
My cancer was lobular; and was, as New Flower says, difficult to detect. I was first staged at 2, but after surgery that was changed to 3A. 4 1/2 years have passed since I was first diagnosed.

The cancer journey IS into unknown, scary territory, so take a deep breath and take it one step at a time. The stages are treatable and there are many of us here to help you along the way. Please keep coming and asking questions. xoxoxox Lynn

Invasive lobular
Had this also. Stage two no node involvement, hopefully the same for you. Mastectomy one side as they thought more activity in the breast after MRI, other than initial area. Had mastectomy when the questionable second sight tested turned out was false alarm.

Oh no they look it away for no reason. Turns out lucky I did as ................

Whilst having procedure as big busted, plastic surgeon reduced good side, told me they didn't make implants the right size for me! SO any ops on the breast material taken away is tested.

The reduction material tested for a large amount of pre cancer cells plus a small active area. Turns out if hadn't had initial mastectomy the other one would not have shown up for years. Both sides same cancer type, Estrogen positive, no node involvement.

Had second mastectomy one month later, remember this one doesn't show up on mamos most of the time and sorry to say often appears in other breast. Hate to cause you worry, but I am very pleased all was taken away and hoping the Tamoxifen deals with anything lurking. I had chemo only and we can all help you through that, don't scare yourself.. I'm further down the line but doing well, good luck. Hear to chat, vent, advise whatever you need, this sight is excellent and helps no end with anything that crops up.

trsmith0104 said:

Can I ask what type of
Can I ask what type of surgery you had? I am meeting with the surgeon now on 8/8/12 to discuss my options. Although I am sure there are many, I am always interested in what other people have chosen. Also - my cancer has not been staged yet because it is unknown whether or not it is in the lymphnodes. Once they determine this is when I assume they can appropriately stage and determine type of surgery and treatments to suggest. Also, sorry for the questions but did you go through both chemo and radiation? I am sorry for all the questions, and this sounds kind of bad but I am glad there are others out there like me because it helps me to not feel as alone......

You can ask
any question you want! No questions are off limits as far as I am concerned. I was small breasted so a lumpectomy was not a possibility for me. I opted, however to have both breasts removed even though I did not have cancer in the other one. There were many factors that figured into my decision: 1) very strong history of breast cancer in my family, 2) dense and difficult to diagnose breasts, 3) less likelihood of recurrence, 4) aestetically it would be easier to look more "normal" in clothes, and finally 5) peace of mind.

I think it is relatively normal that your cancer doesn't get staged until after your surgery. That is what happened to me. They weren't sure of node involvement so it wasn't until after my surgery and the pathology report came back that I was staged at 2A.

Since I had a double mastectomy, I didn't need radiation, but I did have chemo. Chemo itself was about a 4 month process.

Please know that you are not alone in this.

Best,
Clementine

RozHopkins said:

Invasive lobular
Had this also. Stage two no node involvement, hopefully the same for you. Mastectomy one side as they thought more activity in the breast after MRI, other than initial area. Had mastectomy when the questionable second sight tested turned out was false alarm.

Oh no they look it away for no reason. Turns out lucky I did as ................

Whilst having procedure as big busted, plastic surgeon reduced good side, told me they didn't make implants the right size for me! SO any ops on the breast material taken away is tested.

The reduction material tested for a large amount of pre cancer cells plus a small active area. Turns out if hadn't had initial mastectomy the other one would not have shown up for years. Both sides same cancer type, Estrogen positive, no node involvement.

Had second mastectomy one month later, remember this one doesn't show up on mamos most of the time and sorry to say often appears in other breast. Hate to cause you worry, but I am very pleased all was taken away and hoping the Tamoxifen deals with anything lurking. I had chemo only and we can all help you through that, don't scare yourself.. I'm further down the line but doing well, good luck. Hear to chat, vent, advise whatever you need, this sight is excellent and helps no end with anything that crops up.

My second affected breast
My second affected breast was lobular. treatment depends on type, receptor status, size , nodes, oncotype(potential test). I had mastectomy, chemo and rads. and am on tamoxifen. i am also getting propholactic zometa, althought the stucy has not been conclusive.

trsmith0104 said:

As you have explained you
As you have explained you had a double mastectomy. Are you planning to have reconstructive surgery later (after chemo and radiation)? I am a big baby when it comes to pain. I have read that the regular mastectomy (is there such a thing?) is not extremely painful. It is when you add the expanders or the implants after the actual removal of the breast tissue is what causes the discomfort and problems. Keep in mind this is all research that I have read. I get more nervous as the days tick away. It's been almost 2 weeks since I have been told I have cancer and I am just now able to get in to see a surgeon. Good thing it's not an emergency or something.....

Tonia

Hi Tonia,
I got expanders put in during my mastectomies surgery and then after chemo had reconstructive surgery. The pain from the mastectomies was really minimal. I don't know if that is because of the pain meds they give you but I can't say that I felt very uncomfortable at all. I had essentially no pain at all from the expanders. When I got filled (every 2 weeks) for that afternoon I would feel tightness but by the next morning it would be gone. I never even felt the need to take a tylenol from the tightness. I will say that the feeling of the expanders in my body was weird. They felt hard and unyielding, however not painful. A few weeks following the completion of chemo, I had the exchange surgery to remove the expanders and replace them with my permanent implants. For that surgery, I was in the hospital in the morning and home before lunch. The implants were more comfortable than the expanders in that they moved and were soft. That weird feeling was gone. I completely understand getting more and more nervous. I wish I could call your surgeon up and have him see you asap! On the good side, the fact that you didn't get an appointment right away could mean that they don't view this as a super serious situation. Nevertheless, I'm with you. Get to the surgery and get it out immediately!

Best, Clementine

trsmith0104 said:

I have been leaning towards
I have been leaning towards this option but am nervous about the implant part. I have read horror stories, etc. Talking to people like you who have been through this makes it feel easier for me even though it probably won't be. Maybe I feel more at peace with it (if that is the right choice of words)?

I completely understand
feeling nervous. At the beginning, I was a wreck. I had someone who had been through it to talk to and that really helped me a lot. I'll be around if you have any questions or just want some moral support. Feel free to Private Message me if you prefer that as well. I'll be thinking of you and I hope that everything works out for the best.

All the Best,
Clementine.

trsmith0104 said:

The meeting with the surgeon
The meeting with the surgeon was interesting. She indicated that because my tumor was small that I only needed a lumpectomy. It is still unknown whether lymphnodes are affected (level 1 is suspect) so they are removing the lymphnodes to be safe. With both of these measures in mind, I am trying to tell myself that they will get all the cancer. I know that cancer is tricky and I also know they test your margins to see where everything is at. My surgery is the 17th. Very nervous....I keep telling myself they will get all the cancer.

I want to wish you good luck
I want to wish you good luck with your surgery. Praying for clean margins and clean nodes.


Hugs, Debby

Sorry to hear of your diagnosis but
You have come to the right place for support! I was diagnosed 8 years ago with invasive lobular breast cancer, stage 3A. I was 44 years old. I had a mastectomy and chemo and radiation and then I had herceptin. It is very scary waiting to find out about treatment. The chemo was not fun but not anywhere near as bad as I dreamed it would be. The mastectomy surgery was also not very painful. Once you get a treatment plan you will feel much better. I always tell people to get a second opinion on everything. And yes this cancer is very treatable. I am living proof! Blessings, Teri

Hi Tonia, I'm 40, bilateral
Hi Tonia, I'm 40, bilateral with latissamus flap immediate reconstruction. Just want you to know I'm here for ?'s as well. Please let us know how you are doing when you get the chance. In the meantime, take good care of yourself and get plenty of rest.
Miles of Love,
~Kari