The most normal spread of ILC? % recurrence in other breast?

Hi,

You do sound tired-which is normal.  I found that it took me a whle to really recover my energy from radiation... but it will come back, I promise.  Have you tried to take the letrozole at night? that seemed to help me  in the sleep and joint pain department--really changed how I felt.

As for your recurrence question--- I too have read that ILC can come back in the other breast.  At each oncology appointment (every 6 months) I ask my oncologist about this (Dana Farber) and she says that it is very unlikely.  I had a lumpectomy in 2008.  

I think everyone has different information on this-- and it is hard to find out the "real"information in the breast cancer world, because it changes so frequently.  

This may or may not be helpful, but I honestly found that it took me almost two years from the end of my treatment (lumpectomy, chemo and radiation) to feel like myself againg.  The good news, is that I do feel like myself, better than myself and I don't think about breast cancer most days (just this week because I have an oncology appointment!).  But once it is over, I don't think about it again until the next appointment.  You will get there.... it is just still early for you.....

Here is hoping for a better year this year!!!

No, why more deadly? I did NOT say that 70% of patients recur, I said that of those who DO recur, 70% of those recurrences are in the bones.

I am still confused about that 80% recurrence in the other breast. I remember much lower numbers for that. If it were 80%, the docs would be far more eager to do BMXs. I think there must have been some sort of crossed wires there.

What kind of follow-up care are you getting? 

Lily55, I sorry but I'm afraid what you're seeing is what cancermath says. But remember not everyone get it back. You had 7 nodes positive though. I know in my case chemo wa ssuggested for me, and I was node negative with a very small tumor.

There are many things you can do that isn't taken into account when Dr.s run these stats. I know my Onc. believes exercise is just as important as the meds. He encourages all his patients to take advantage of the free exercise classes the YMCA offeres cancer patients. The other peice is diet and suppliments.

Lily, learning to live a new normal beyond bc takes time.  For many of us, it took a good couple of years to get beyond the all encompassing daily fear you have now.  It's a process you have to go through -- examining all the stats, etc. -- and I don't think anyone can short circuit it for you.  But Kira is right.  We can't second guess the decisions we've made about tx, and we just have to move forward, so that we don't continue to be victims.

One thing that helped me a lot is coming to the realization that if I worried all the time about a recurrence and it never happened, then I would have wasted all those days I should have been happy.  And if, God forbid, it did happen, then I still would have wasted all those good days before it did.  So my advice is to read whatever stats you still need to read and absorb about your situation, but also realize that either you will have a recurrence or you won't -- and all the stats in the world won't make a bit of difference either way.

IMO, the best things we can do post-tx is to strengthen our bodies to hopefully prevent a recurrence, or to deal with one if it happens, in which case it was probably genetic and unavoidable if we've done everything we can in the way of getting healthy and strong.     (((Hugs)))  Deanna

Generic versions of medicine should be fine.

Tamoxifen is a generic.  I had anastrazole, which is a generic for arimidex ($400/month vs. $60/3-months).

Many gals here are generic.  The cold-flash/hot-flash means your estrogen is dropping...good thing.

I often wondered if I should have switched the AI's versus sticking to just one.

Julia Child had a mastectomy (left breast) and nothing more...no chemo, no rads, no drugs (none available at the time)....she died a month shy of 94.

Even IF you should get a recurrence in the other breast, that is considered either a primary or a local recurrence and your suvival does not change.

Give yourself permission to grieve and then time to heal....

I did yoga years before dx and I swear it helped me through the ordeal.  I was on no pain meds even immediately after surgery (my surgeon was very upset that I was not taking anything)....but I grieved and felt lost.  There are days when I look down and miss the breasts I had (I had beautiful D-cups that were very sexually responsive)...and then I try not to let it define me. 

My husband is kind and thoughtful and he even said I looked less matronally and younger!! 

You will look back in a year and feel differently...2 years, even more different....give yourself the time.

I still think something is majorly off with that 80%, but not sure what they told you. I suspect that they were telling you that you had 4X the normal chance of contralateral recurrence, not 4X the risk of BC generally. Where are you?

Here is what I found:

"Patients should continue to have regular breast physical examinations and mammography to detect either recurrence in the ipsilateral breast in those patients treated with breast-conserving surgery or a second primary cancer in the contralateral breast.[27] The risk of a primary breast cancer in the contralateral breast is approximately 1% per year.[28,29] Patient age younger than 55 years at the time of diagnosis or lobular tumor histology appear to increase this risk to 1.5%.[30] The development of a contralateral breast cancer is associated with an increased risk of distant recurrence.[31,32]" http://www.cancer.gov/cancertopics/pdq/treatment/breast/healthprofessional/page1#Section_8

So even if you are 4X the normal risk because of lack of chemo or whatever, that would make your risk 6%, not 80. That is a fair difference

Also, going by your stats in your siggy, I get different numbers out of cancermath, but not sure where the difference is. As far as I can see you would have gained major advantage from chemo, theoretically anyway.

Some data on outcome comparison between ILC and IDC



http://foodforbreastcancer.com/news/lobular-breast-cancer-has-less-favorable-prognosis-than-expected

Lilly, I was thinking about you today, hoping you're feeling a bit more optomistic than the day you started this thread.  I don't recall if it was mentioned above, but one thing that might be reassuring to you is something my BS now does (I had both IDC & ILC), which are bi-yearly breast MRI's.  Of course, none of us ever wants to contemplate a contralateral bc, but with regular MRI's, if they do happen, they can be picked up extremely early, which should be reassuring to you if your BS will order MRIs for you with some regularity.

Just wanted to share this thought, which I hope might ease your mind a bit.  (((Hugs)))  Deanna

Hi, Lily!  Hmmm... if you're not happy with your planned followup, is there a possibility you could find a new oncologist?  Just because you're finished with your active tx doesn't mean you have to keep an onc whose follow up protocol leaves you uncomfortable or worried.  Just an idea...     Deanna

Wow, that's horrible.  Are you in the US?  If so, there are laws and procedures that should give you access to what you're not getting.  I'm not up on them, but others on BCO have successfully fought insurance companies for access to out-of-network providers, and I'll be glad to help you find that info.

And something else you said above has also been on my mind...  "I would cope a lot better if I had a reconstruction as I am soooo miserable like this..."

Is that decision irrevocable for some reason?     Deanna

NoMoreMeh, that was my situation as well.