Newly diagnosed with ILC

Sasha--so sorry to hear about your sister. (And by the way, don't ever tell anyone you're 61 again--you look incredible!). Regarding ILC vs. IDC, in addition to what was said above, I think you've already seen some of the differences between you and your sister's diagnoses. ILC is more likely to be HER2neu negative. It apparently is slow growing and may have been growing for awhile. It grows quite differently, sort of like an octopus, with its tentacles going in between the normal cells. Some people describe it as growing in sheets or in a single file line. However, despite its differences it is essentially treated the same. I know of no different treatment because of the origin in the lobes versus the ducts. I wish they would look at it differently to see if there needs to be a different treatment. Some people think that it is slightly less responsive to chemo, but I guess that could be the the ER/PR+ aspect of it as well. Also, ILC only represents 7-15% of all breast cancer. Many ILC women choose BMX because of the difficulty of detecting an occurrence. Well that is ILC in a nutshell, in no particular order. I think that once your sister gets into treatment, it will be much like yours minus the Herceptin, and you will be of great help to her.

Mary & Toomuch: the surgery went well. Her tumor was 1 cm, clear margins and if she understood correctly nodes are ok. She's still in a lot of discomfort. I healed much quicker. But not saying too much. I'm going with her to see her dr next week. First check up after surgery. I'm afraid to ask about the MRI. My sister is so vulnerable now and is prone to panic. I'm hoping to have more info. Any advice as what to ask in specific. This is very different from my diagnosis.

Thx so much.

Thx mary.

levassel - I had both LCIS and ILC. I had a small tumor with positive nodes. I initially had a lumpectomy, chemo and radiation and then 5 months after radiation, I opted to have a BMX and immediate flap reconstruction. I had large positive nodes with extracapsular extension so even if I had a mastectomy initially, I would have had radiation. The incidence of recurrance with MX and Lumpectomy are not statistically significant so it's really a personal decision. I have a strong FH of BC and had 5 previous excisional biopsies and I was tired of monitoring my breasts and waiting for cancer so I opted for the BMX. I'm happy with the decision that I made. I think what's most important is that you're comfortable with your decision and if you decide against MX that you're comfortable with the surveillance plan that your BS or MO plan to put in place for you.

4sewwhat, exactly the same, except I had both hyperplasia and actual LCIS in lefty, although lefty was supposed to be a prophy. I was also 47 at DX.

I found my huge lump myself too. Mammos every year since I was 35. Few ultra sounds and call backs for dense tissue in there too. 2/12 found golf ball size lump. Mammo, US and 3 docs all said I was fine come back in a year. Now they say is has probably been there 8-10 years.

Sorry to hear your recovery has been slow. I have been very lucky in that respect. I did both sides, but not at same time because I was nursing a recently broken ankle at the time and did not feel I could be down both arms and one leg!!! With the second surgery (prophy after chemo) I actually came home the same day. With both I was up and going and driving 4-5 days later. It is so different for us all. I did have expanders at the time of MX.

Your surgeon did his job and got it all! Chemo and rads are like the exterminator coming in to make sure there is no place for those bugs to hide!!! I had some larger nodes too and 22 of those suckers. I chose to believe they worked their little asses off and did the job well, not letting anything slip by and that is why there were so many of them working for me!

Chemo and rads were far scarier in my head than they were in real life. I hope you find the same! I am 20/33 rads today. Just got home. 4 weeks now but seems like i just started. You will get through this and it will go faster than you think!

Hugs & Prayers!

hi everyone. We're waiting for the oncotype for my sister. It's been almost 5 weeks, so the mo can determine if she needs chemo or not. He indicated that he didn't think so, but needed the numbers to be certain. However. If she needs chemo it was a mild chemo( I didn't get the info). She wouldn't lose her hair. Anyone know what it might be??

Thx

Hi all,

I am facing ILC,4 cm, Stage2b-3, Grade 3 ER+/PR+ 100% I will start with chemo in the next week or so. I have my second meeting with my onco on Sunday. The chemo will be high dosage Adriamycin, with surgery, radiation and hormone treatment. Anyone else have high dose Andriamycin>? and what advice can you give me that will help with the side effects?

Just came home from hospital today after 2nd surgery yesterday! Still trying to wrap my head around the fact that I have cancer and now I have a fight that I don't want. My life had just stabilized and for the first time in so many years I started dreaming about normal things like being able to afford a vacation, maybe fly to see my children in the different states that they are in. Someday buy a house.

I broke down last night in the recovery room. The pain was so bad and then there was bleeding that they had to stop which caused more pain but the resident doctor didn't seem to think my pain should be so bad. I lost it and told him when he goes and has his tits cut off and comes back and has more surgery within the month, then he could tell me how he thinks my pain should be. I am a strong woman, I tried hard not to cry and not to lose it but he has not walked a mile in my shoes. Fortunately the nurse kept pushing the pain medicine button and eventually he was done.

It's hard to deal with rigid or ignorant people when I am trying so hard to be strong. I have to cry...don't I?

Flutterbye,

I hope you are resting at home and able to start the healing process. Our diagnoses is almost the same. I also worry constantly that the Pet. Scan did not pick something up, as the mammo, which I got yearly did not see my Lobular tumor. I think we all have that in common. I had a lumpectomy, most ladies get mastectomy with lobular, so I also worry about that decision. My surgeon advised the lumpectomy which I thought was ok, never dreaming I would have so many nodes involved. Had chemo # 7 yesterday.

We all have no choice but "being strong, tough & sometimes suffering in silence". I am tired of it all, I want my old carefree, happy life back but is not going to happen, at least not for awhile. Wishing all in this group an peacefull weekend.

Hello Sushen,

I had the same treatment as you, only the chemo was 14 days ( 2 weeks) apart. They call it dose dense. I really thought Adriamcyin was a legal form of torture. Mine though also had another chemo drug mixed in called cytocin...But, I have read some of the ladies breeze right through it, no big deal. I was bedridden for about 4-5 days after my infusion. Then got my strength back for a week and did it again. My surgeon & oncologist told me working would be difficult, unless you can write your own schedule. I work at a intermediate school, so I took a leave of absence. I have had 7 treatments, 1 to go. The one thing I needed was a stool softener, Miralax. Also oncologists said to take Omeprazole, it is a acid reducer for the stomach ache, which I still have but not all the time.

Taxol is not as bad as Adriamcyin, but does cause bone pain & muscle ache. I certainly hope I did not scare you, just my experience. As horrible as this all is, it is nice to reach out to women from different areas & countries. I live in Idaho, USA...let us all know how you are doing & good luck...

I was diagnosed with stage 1 Invasive lobular Carcinoma and LCIS in my left breast on Nov. 7. Since then I have had a biopsy and MRI, to perhaps discover the extent of the spread before going under the knife. The results from the MRI showed another contrast area under the existing tumor [which measured a bit under 2 cm} and the doctor mentioned that it could be a hematoma? THe day of the biopsy they did another mammogram just moments after they finished taking samples. I was wondering if the pressure of going under the paddles could have caused the possible hematoma? I had excessive bruising but didn't think too much of it at the time. Now the same area that was so bruised is sore to pressure. THey want to go back in and do another biopsy on the area I suspect to be hematoma, but I am a bit freaked out about more poking right there, and what might happen if they puncture it? any help out there?