Long Term ILC Survivors?

I have had the surgery (lumpectomy) and radiation with boost.  My cancer was small abou 1/3 inch  and I had no lymph nodes involved. It was ILC and was ER negative and PR positive.  I am unable to find what is the usual hormonal treatment for this type of cancer.  I loved my surgeon and all the people at radiation therapy but just do not like the medical oncologist they sent me to..he is big into clinical sudies and when I told him that he could keep the tumor for research but I didn't want to be in his clinical studies, he had his assisant call me 8 times and try to talk me into it..I finally just said NO..Now my surgeon wants me to go back to him, while he has never called me with th result of the other tests nor sent me anything else about just standard treatment. He told me the day I saw him that HE would be the one deciding wahjt treatment I would get and I did not like his attitude. I am trying to get info on what sort of hormonal treatments for ER - and PR +,stage 1, ILC  , after the surgery and radaition are now finished, so when I HAVE to see him, I can be informed and not be bullied.  Can anyone help me?

Hi lobular sisters,

Just a word of encouragment  for ILC ladies,  I'm officially 4 yrs past diagnosis/treatments & have one more year on Arimidex. (I'd like to take it indefinitely, the med has worked quite well to prevent a recurrence & its been 4 years!!)

I'm feeling great & wish all Lobular's a positive outcome, which is quite likely since ILC's, especially the classic type, often carry a very good long term diagnosis.

I'm now also 4 yrs from dx, Stage 3 ILC. I'm still on Arimidex...must be working...YEAH!

All the best to everyone,

Trish

Hi,

I was dxd with ductal cancer, three years ago, and with lobular cancer 9 months ago.  8cm tumor in one breast with 19/19 nodes involved.  2 smaller tumors in other (previously ductal cancer removed) breast no nodes removed as they were already done three years ago. 

Im almost ten months out of dxd, no recurrences yet, have had docetaxol chemo, rads to chest wall of left breast, no rads to right as had already been radiated three years ago.  Am having Zoladex injections to supress ovaries and take Femara. So far so good.

It is so great to hear your stories. I have recently been diagnised with invasive lobular and I am scared to death. Surgery is set for December 13. I am having a mastectomy with tram flap reconstruction. I had an MRI done to show size and it came back with an 8 cm mass. I was shocked. I had no symptoms at all. Abnormal mammo in March along with my mom who ended up with invasive ductal. Ultrasound for me showed nothing so I went back this October and because now there is history sent for biopsy which showed cancer. Pathology report said a grade 1 so how did this grow so big. How long have I had it? I don't know if I will ever know for sure. I'm scared of spreading with tumor so big. MRI showed no sign but they won't know until surgery. I heard MRI can show a larger tumor than actually is there. I hope. May God bless you all and I'm hoping to be writing as a survivor too someday. Thanks to all for input.

Bean,

MRI's are very sensitive.. show up Everything.  This is why they are not recommended in place of mamography for the general population. However they do give a doctor additional information when dealing with an actual cancer. 

My experience has been that mammograms and UltraSound aren't always the most useful.   Having had a ductal diagnosis 8 years ago, of course my yearly mammograms & physical checkups were religious.

Thankfully last Feb I had a radiologist with real sharp eyes, who spotted "something hard to see" on a mamogram,which didn't show up on Ultrasound.  Did the usual wait 6 month routine and went back.

The "hard to see something" proved to be an invasive lobular second primary...which is stage 1,etc etc.  However because of the lobular, an MRI was done of both breasts.  Lucky me, a 3rd primary (ductal stage 1) in the other breast that never showed all this time on mammogram, or US.

I think I am getting the hint, and after the chemo will consider the bilateral.  (I would appreciate hearing from anyone out there with bilateral experiences)

Indeed Bean, you will be joining the conversation as a survivor, and you will be helpful to those following behind you I am sure. 

Keep us posted on how you are doing, we want to know, and help however we can.

DakotaP

Hi, Jennifer--welcome. You're lucky to have Dr. Cristofanilli as your onc--he's one of the only ILC specialists in the US.

I went through the neoadjuvant vs. adjuvant chemo debate, also. My surgeon strongly felt that a lot of what was showing on my MRI was LCIS, and she was right (half of the 5 cm on MRI was ILC and half was LCIS).  She strongly felt adjuvant chemo was the way to go in my situation for two reasons. The first reason was to get correct staging. My MRI showed muscle involvement, which turned out to be the LCIS, not the ILC, growing into the muscle. The surgeon said that made the difference between being Stage IIA and being Stage IIIB. The second reason was that she didn't want to have to do what could end up being unnecessary radiation. She said that with neoadjuvant chemo, I would've automatically ended up with axillary node radiation and chest wall radiation. My SNB ended up being negative, so the axillary radiation would have been unnecessary. The chest wall radiation is still up in the air until I meet with the rad onc next month.

So, in my case, doing adjuvant chemo was the way to go. However, if your tumor truly is 7 cm, then neoadjuvant is probably wise if you are interested in trying for a lumpectomy. Also, it allows the onc to see if the tumor responds to chemo.

You said they think a lot of the 7 cm that shows on MRI for you may actually be LCIS, which makes your case closer to my situation. If your ILC tumors are really 9 mm and 4 mm, neoadjuvant chemo wouldn't make sense.

Pleomorphic ILC is a subtype of ILC that is considered more aggressive than classical ILC. Not all labs identify the ILC subtypes, but I know that MD Anderson does. In fact, a couple of the pathologists there seem to be the only ones in the country right now with an active clinical interest in pleomorphic ILC. So your subtype should show on your path report when you get it if you have your surgery done at MD Anderson. 

Hope that helps a bit. 

Thanks for the update, Dakota! Wow--that's a lot to deal with. Is your new primary triple negative as well?

I'm getting towards the end of chemo--just had my 5th of 6 chemo rounds last week, so it's an official "sitting in the recliner and drooling" weekend. Will start rads after the holidays. My Stage IV BC mom is not doing well, so that's been a big source of concern. Thank goodness for this board, or else I might just lose my mind. 

Well hello there! just saw your other reply! I did ask my onc about spread and he said that with lobular its not as great a risk as other breast cancers ~ he was very reassuring, so like you I would like to see some data, would be interested to see what you find out.

thanks for your reply Sherri.

Rosemary

Hi Kathleen -

My chemo was not fun, but certainly not as bad as I thought it would be.   I didn't have any days where I couldn't get out of bed or anything.  With AC, my biggest complaint was throat sores that made eating difficult.  I also had constipation and hemorroids.  This all cleared up very quickly after it was over and you quickly forget.  With Taxol, I had bad leg pain for about 3 days each cycle.  Other than that, I felt great on Taxol.

I had a mastectomy, but was not a candidate for tram flap so I had expanders inserted.  I felt back to normal in about 2 weeks and went back to work after 3.  I have a friend who had tram flap and she said it was a really long recovery - about 6 weeks.  She doesn't work, but she remembers not being able to pick up her toddler and walking around "gingerly" for a long time.  You may be ok, since your job is probably not too physical, but if you are on your feet a lot, 3 weeks may be too soon.  But, I'm no expert on tram flap.  You may want to go to the reconstruction section on the board.  I'm sure you will get more feedback from those who have gone through that.

Best of luck to you.  Let me know if you need anything.