ILC - The Odd One Out?

I just started yesterday and chose to take it in the am. Figured I would be awake to monitor SEs that way. Not sure if that is correct, but was my reasoning. 

Smrlvr, I take it around 10:30 at night.  I chose then because I NEVER forget to take my sleep aid, so I knew I'd remember if I kept them together.  However, since I started it, I've been waking up around 3:30 am every night.  That's EVERY NIGHT!!!!!!!  I hate to change the time I take it because 10:30 really is the only dependable time of day for me, but I really miss a good night's sleep.  Sigh......

smrlvr, I have been taking Tamoxifen for about six weeks now since finishing six months of chemo.  I started out taking it last thing at night when going to bed but, due to hot flushes while sleeping, have changed my routine to first thing in the morning. 

After my primary dx 19 yrs ago, at 48, I was put on Tamoxifen while on the cusp of menopause and, while enduring all the normal hot flushes of that time of life, I nearly quit taking it because it made me feel quite panicky during the day while out and about.  This s.e. almost led me to refusing it this time around (67) but talked myself into it 'cause I need as many options as possible at this time.

It hasn't been as bad as the first time, for which I'm thankful, but my tolerance for whatever txs they come up with has suffered considerably in the last six years.

I hope you find it tolerable as everyone is different and we all have varying levels of tolerance for these meds.

Sheila.

Thank you ladies for welcoming me. I had my lumpectomy and node biopsy this morning so now waiting for results. It was so much easier than the core biopsy. I slept for hours and feel pretty pain free now, just tired and wobbly due I think due to the Oxycodone. I hope to stop those after tonight

 I am trying to find out as much as I can about ILC and one thing that I have read is that most are PR+ when they are ER+. My initial biopsy was ER+ (80%) and PR- (0) and I am post menopausal so I will ask more  questions on hormone treatments rather than just Tamoxifen on its own as for every idea in the literature there seems to be a different one. 

Kind of off topic but I had to share - I was lying in bed this afternoon after getting home and I have a bird feeder at my bedroom window that I enjoy even though the woodpeckers wake me up early! Suddenly a  bird that I had never seen before in two years of birdwatching appeared which is always exciting. It looked a little like a robin but it had a lot of white on it.  I looked it up and it was called a Rose Breasted Grosbeak. Maybe a coincidence but it just made me feel very peaceful.

I strongly agree with Momine about using an aromatase inhibitor such as Femara (Letrazole).  I wouldn't worry about the PR-.  There's no drug for PR+ anyway.  Best wishes for your continued quick recovery.  

I don't start taking it until my rads are finished in July.  Doctor told me better if I can take at night.  Seems like it affects everyone quite differently.  Good Luck!

has this thread gone very quiet as I can't see any updates since may 11th ??

Is anyone out there ?? 

Had my first annual mammo and U/S since Dx. All looks clear )))

bc101, I have also been told no scans until I report symptoms.  My MO -- whom I love -- told me very honestly that studies consistently show that there is no significant difference in outcome if something is caught by a scan before we can feel it, or if it's caught because we report a symptom.  She said that, bottom line, there's no additional benefit to finding something via a scan rather than a symptom, so long as we're being vigilant watching for symptoms.  I hate this, but I understand it.  Something happened to me this week that made me REALLY understand it and be okay with it.

My next door neighbor, a quirky guy who lives all alone and trusts very few people, told me yesterday that he has pancreatic cancer and will live only a few weeks more.   He just found out last week when he had an MRI for back pain.  Now, I have noticed for over a year that he was losing weight and didn't look well.  But, we aren't close enough for me to say, "Hey, Mike, you don't look so good.  You should see a doctor."   So, yesterday, I thought to myself, should I have said something months ago?  Say I had said something which led him to find out last fall that he had pancreatic cancer.  That would mean he would have been dying of cancer for the last six months instead of living blissfully ignorant.  

I'm not saying that finding something on a scan for us is the (immediate) death sentence that pancreatic cancer is.  I love it when my MO tells me the story of her patient that had a spot on her pelvis 8 years ago that they zapped, and she's been fine since.  I'm just saying that I understand that it's better to feel like your living without cancer than with it.  

Having said all that, I should tell you I've had my first post-treatment lab work, and the anxiety waiting for the results was overwhelming!  I'm grateful to have lots of Ativan left!

bc101,  I, too, was (and still sort of are) skeptical about the ASCO standard of no scans  unless you have a clinical symptom. It seems so counter-intuitive when we've been inundated with the warnings that early detection saves lives.  I've asked every oncologist, radiologist and breast cancer surgeon I've been to and they all agree with the ASCO standard.  I've been told that regular scans do not improve long term progress.  It's frustrating.  

My docs will not even do blood tests or labs. When asked, the RN said they'd do scans if I'm really just stressed out to the point where I can't sleep. I'm there now. So, maybe I'll ask again at my five month checkup which is coming up in June. I've read that most cancers are found "in between doctor visits." Ok, but there were a lot of things that were messed up with my diagnostics and treatment in the beginning. I think I could make a case based on that. I asked the RN where ILC usually goes if it recurs and she said "it could go anywhere." 

Just wondering, for those out there with saline implants - can you feel your chest wall? I still have TE's and I can't really feel the chest wall with these pillows on my chest. They were placed over the muscle vs. under. I was told by one RN that I'd just have to "press a little harder" when doing SBE's. Yikes. 

How many of you out there do monthly SBE's?

BTW, congrats on being 8 years out, Karen! And thanks for hanging around on this thread. It gives me hope!

Hi.

I do a mammogram every December and an MRI every may/June. I had to fight for the MRI w my insurance co but won rather easily when my surgeon wrote a letter explaining that it was needed to detect ILC. 

My drs do not believe in other scans unless symptoms appear and I'm totally with them on this. Mets cause symptoms and not sure that finding mets very early changes the course of treatment. Feel free to correct me on this if I am wrong. If I am right, then who needs the anxiety of years of unnecessary scans not to mention the radiation and cost. 

sgreenarch, my MO said the same thing -- "Mets cause symptoms and not sure that finding mets very early changes the course of treatment."  She also said that finding anything earlier by way of a scan rather than a symptom doesn't change the outcome either. 

A friend just found out he has pancreatic cancer and has weeks to live.  If he'd found out he had this a year ago, he would have been dying of pancreatic cancer for the past year instead of living his life.  I think sometimes ignorance is bliss.  

bc101, I think that's exactly what they mean, but all of this is assuming that we're being hyper-vigilant about reporting unusual aches and pains.  My MO said the same thing about a two week rule as someone posted earlier.  

Enjoy your garden!  I'm heading to Home Depot to get supplies to paint my kitchen.

Diane...node involvement automatically means MX??? 

Deb, it was never done, because I was planning to do it, but then I got a new job. New job was supposed to last 2 months. 6 months later, I am still there.