Diagnosed this month and have no one to relate to with ILC

Hi Cris32, I know the confusion and fear you are going through right now.  So many unknowns.  I was diagnosed 11 months ago, 2 surgeries and radiation since then.  I was stage 2 as well, but grade 2.  ILC tends to be the better type of BC to have, because often it is less aggressive.  My right side had the cancer and on March 20th, I had a preventative on the other side.  I'm taking Tamoxifen for 5 years to lower my estrogen levels, as mine was estrogen/progesterone + as well.  I did not have Chemo as it would have only reduced my risk of recurrence by 2%.  After a lot of thought and taking with my doctors, I decided not to.  I'm sure other ladies can respond to give you the preoperative chemo perspective. 

Hang in there Chris32, I know how hard it is those first few months.  Once you have a plan and have some facts, it it does get easier.  Take deep breathes, one day at a time and hug those beautiful girls of yours....

-Sharon (aka butterflylady)

Hi Cris, I am sorry about your diagnosis. It must be a huge shock at your age.



You are not alone here as this is a very supportive community and some of us have ILC.



My tumour was stage 3 and I had lumpectomy, chemo, radiation and am now on hormone therapy.



We will help you through and answer any questions.



Keep posting!

Dear Cris32: 

I wanted to chime in so that you know that this is a good place to come to and that you have plenty of support. ILC isn't as common as IDC but the first thing my surgeon said to me is that it can be less aggressive and to feel hopeful. I've hung onto that. He himself had a bout of cancer and he's very open and honest, and not falsely optimistic, so I choose to believe him.

Your life is completely upside down now, and I remember people telling me when I was where you are now, that things will go back to normal. They were right. This July will be 3 years and there are actually days that pass when I no longer obsess about breast cancer. I am coming up to my yearly MRI and this is always a rough time for me (PTSD) but even with that, I like to think that I'm doing all that I can to stay healthy and that, God willing, I will be ok. 

There are so many good stories out there, it's important to not get stuck on the bad ones. Treatment keeps getting better, you've got a lot to live for. I didn't have chemo, but had a unimastectomy, no reconstruction yet, (maybe never - I like not feeling pressure to have more surgery right now.) I switched to femara after two years on tamoxifen and am feeling well.

Feel welcome here, ask anything you like, we are sisters in this. With love, Shari

Welcome Cris,

Sorry you have to go thorugh this so young...I can't imagine.  I did have aggresive tx as you can see, and did fine.

One thing I did throughout my dx/tx/etc was to get a copy of every report printed and every scan made and keep in a folder, beginning with my pathology report.  I might suggest you do that too.

Hang in there-we are here for you.

Claire

Cris, just think of the chemo as whomping on all your cancer cells.  I tried to "embrace" the tx, when it was dripping into me, as much as I could. I know it sounds weird, but the chemo drugs were my Special Forces-Green Berets-commandoes-counter-terrorist warriors.  Every time I had chemo I wrote in my journal "go in there and GET 'em"!  Being married to a retired Special Ops soldier might have had something to do with it  

All you have to do to get a copy of any report is to ask. You might have to show some ID to pick reports up, but they are yours--you hired the experts to prepare those reports just like you'd hire an accountant to do your taxes.  Remember--you are in charge of your treatment and health; no one will care more about your healthy future like you do.  Knowledge is power.

Hugs

Claire

cris - hugs

my onc nurse started a 3-ring binder for me on day one .... she put everything in it ... blood tests, chemo type & doses, etc ... that way if i had to see another doctor for some reason or go to ER then i could just grab it and there would be all the info they might want to see rather than relying on my poor old memory ... i recommend you start one for yourself too ...

and remember the chemo rule "drink lots and pee often" ....

Cris, I can't imagine what it must be like to be on your own with 4 kids. RESPECT! Do reach out to see if you can get friends to help or hire some help even. I found that it really was easier to have others clean, for example.

As for shrinking the tumor, you are less likely to have complete response in ILC, but mine shrunk from somewhere over 5CM down to a few milimeters.

Tell the onc nurse about the heart palpitations. In general, do not be afraid to give them a call.

The surgery. You do not need to do the recon right away. My surgeon actually asked me to wait a few years, and at the time I felt quite freaked out about it, but now I am so happy I had the extra time to think, investigate and also just experience what it is like to be boob-less. There are so many options for recon, so even if you go ahead with the immediate recon, I would urge you to visit the recon forum and get a sense of all the options.

Chris I know the feeling of feeling that your the only one who has ILC.   I have learned though that everyone is different, even if we all had the same cancer we would have different stories.  I wish sometimes too I had another friend that had ILC.  But I do know that I am not alone, cancer is cancer and even the options as far as treatments differ.

So for now try to see if you can find a Breast Cancer support group- mine has helped me tremendously with things I never ever thought I would face.

"I listened to my doctor and did not take the nausea meds until the nausea started." 

That is the opposite of what mine told me. She gave me a strict schedule of 3 different anti-emetics to take for several days after the chemo, and they also gave me emend during chemo. Her idea was to avoid having any nausea start at all. It worked.

Re nausea meds: they give you anti-nausea meds in your infusion--and I was told not to take any extra until at least the next day, since I already had a hefty dose from infusion day.  That was what one nurse told me. A doctor told me to take them as I needed them with no specifics about waiting till the next day.  Go figure--conflicting info!

At any rate, the Zofran didn't work so well, by mouth or infusion. I finally asked for an rx for promethazine (I found a few tablets in my med cabinet left over from a previous surgery--took them and htey worked better than the Zofran), and used that drug till the end of AC tx.  It worked about the best, but for me, nothing completely took away the nausea--it had to subside on its own, 3-4 days after each tx.

Taxol did not make me sick at all. I got back my appetite quickly.