friend just Diagnoised Help!!!!

nobleanna007

Hi,

   I am in hopes one of you lovely women can help me with helping my friend. She was just diagnoised this past week so is kind of in shock. I told her since I know the boards so well due to my own diagnoisis I just don't know about this type. It has totally floored her since she has had mammos but as I have read thru some of these posts its a sneaky one. Can anyone give me some words of wisdom so I can try to help her understand.

              Thanks in advance I appreciate any feedback I can get.

                                   Bridget

                                             

marshakb

Bridget, I would say that it is usually less aggressive than IDC, usually HER2 negative.  There is more of a chance of it "mirroring" in the other breast so make sure she considers this.  I would suggest to her that she come on and read this particular forum.  We have some of the best researchers on the boards since ILC makes up about 20% of BC. 

Otherwise, you know what to do.  Hug her tight, let her know you understand, and will be there for her.  Hugs to your friend, Marsha 

nobleanna007

Thanks everyone,

      I really appreciate the feedback. I do know she has decided to have a bilateral like me. I think she just does not want to chance it coming back. And after reading through I think she is making a good choice. I am glad I am going to be able to be there for her.She is a tough young lady and I know she will be fine. I worry cause she has always had this tough side and sometimes its hard to figure out how she is really feeling. She is also in the process of getting a divorce and has 3 kids. I just worry! Can you tell I am the one who is the worrier in the friendship!!!! I will mention to her about these boards. Alot of people are fearful of them. But they sure did help me and still are.My sister is always like why do you go on them so much doesn't it scare you more or depress me. I am like know these women are wonderful and I can actually talk to someone who knows exactly how I feel!

                                             Thanks again!!!!!

caligrlof68

I didn't notice a lump either, just a slightly firmer area. After clean mammo my doc did US which showed "questionable" area. Biopsy was done....malignant! ILC  MRI showed 7cm area. How did it get so big before it decided to reveal itself?? After realizing what was going on...I took a good long look at myself in the mirror and noticed that nipple was slightly off. It was pointing up slightly. Hmmm how come I never noticed THAT before???  I am thankful...my cancer turned out to be the lazy "couch potato" type. It responded fantastically well to neo chemo. I am having a bilateral at the end of February and very much looking forward to getting it over with. 

I have been struggling with depression and thoughts of death since my diagnosis. I'm still battling the depression with meds, but I no longer have thoughts of death...afterall, how on Earth can a lazy "couch potato" cancer beat me?? No clue!!

 I am so glad I found this forum. I have learned so much from reading what all you ladies have to say. I also enjoy the comics and humorous posts I read.

Keep em coming!!

Stacy 

nobleanna007

Thanks Stacy for your imfo. I talked with my friend the other night and she said they have staged her at stage1. They also don't believe it has spread to her lympnodes can they tell by a simple biopsie or a MRI that it has not gone into the lymphnodes? It would be so great if this is true. She has already decided on a bilateral with immediate reconstruction with a tram flap she is hoping to stay a C but I think she will be lucky to be a B And I don't know if they do stacked tram with implants here. I would think that it would have been brought up to me if it was. I was just told I did not have enough stomache fat to do both. Well I do now!!!!! I am going out of State to have a Diep because our state does not offer this type of surgery. I hope she can get what she wants but we shall see. They have not mentioned any chemo to her just the surgery and Rads! So thats good for her. I just don't know enough about this type of BC so I wanted to try to give her some imfo. I noticed that this type is usually ER+ but not HER2 is that the case for this type?

                                    Thanks for any imfo you can give me!!!

                                                      Bridget

caligrlof68

The biopsy won't give information on lymph node status. The MRI does show enlarged lymph nodes, which will alert them that cancer could possibly be growing in that area. This could be confirmed with a sentinel node biopsy. If your friend needs Rads then I don't suggest immediate reconstruction as the radiation will affect her newly formed breasts in a negative way. The tissue can get hardened and change shape. My plastic surgeon today said that if one needs Rads it's best to wait one year before attempting reconstruction for best results. I hope this information helps your friend.

NinaK

I also was in the same boat.  I had a thickness on my right breast.  Mammogram showed nothing, ultrasound showed nothing, cat scan showed nothing, pet scan showed nothing but the needle biopsy showed ILC.  I also did neo-chemo (4 A/C, 4 taxol), bilateral mastectomy, 2 of 19 nodes involved, 28 rounds of radiation.  I've been on arimidex going on 5 years (I'm supposed to stop on May 13th, yay!).

 Since my cancer didn't show on any imaging tests, my onc. said there is very little to follow up on and to just go by how I feel and my general health.  Mind you, I'm doing well!  Yeah, sure, I do have some aches and pains, and yeah, well, I did gain some weight but I'm still here to b*tch about it all!.

 I didn't want reconstructive surgery because my course of treatment would have me under the knife twice and I didn't want to do that.  I'm fine with prosthetics and I'm fine with all of it almost behind me!

Chin up...think positive! 

nash

Wow, Nina--that's incredible that even the PET didn't show anything. How completely disconcerting. Did you have the CT and PET done after the biopsy/diagnosis (I'm curious if they couldn't even see the mass when they knew there was a malignancy there).

NinaK

Hi Nash and Starla.

First, I had a mammogram done and then an ultrasound (before diagnosis)...neither showed anything.  Then after diagnosis via needle biopsy, I had a cat scan and a pet scan and again, neither showed the mass.  And because the mass wasn't visible on any imaging tests, I was considered "inoperable".  Breast MRI wasn't offered; I suppose it wasn't an option then.

I did neoadjuvant chemo (4 AC, 4 Taxol) and saw my med. onc. weekly so he could feel the exterior "swelling" and determine if the mass was shrinking.  I did a lot of "visualization" exercises and envisioned the tumor the size of a peach pit andjust about every day, I'd visualize the peach pit shrinking.

By the end of my chemo, both my med. onc. and myself believed that the tumor was gone so anyone that says that chemo isn't effective with women who have ILC are mistaken.  Chemo saved my life.

After surgery, the pathology reports stated that there was no tumor or mass left in the breast; only residual tissue and the nodes that were removed showed 2/19 that had trace amt's. of cancer...only 2 tests showed these trace amt's. of many tests.  Btw, I had bilateral mastectomy by choice.

After surgery, I had 28 rounds of rad's...I opted not to have reconstructive surgery because of my course of treatment.  Since radiation was starting 6 weeks after surgery, it was suggested that I wait to do reconstructive surgery because the radiation may have caused problems if I had reconstruction done during surgery.  I'm fine with my prosthetics and I'm relieved that I didn't go for the reconstructive surgery (heard too many nightmare stories about it).

Luckily, I've tolerated arimidex well...very few side effects.  Well, let me say that the side effects haven't altered my life.

The only advise I can offer is to be your own best advocate, stay on treatment schedule no matter how crappy you may feel, and most importantly, stay positive!  I'd always tell myself if I felt crappy or down that tomorrow, I'd feel better and I did.

I sure hope this helps!

Nina