ILC - The Odd One Out?

RobinLK

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. 

4sewwhat

When I first started taking Tammy I did it aroung 3 pm.  My mornings are crazy and I also was taking a lot of vitamins and stuff in the am.  I took it for several weeks before my surgery and chemo started.  When I went back on it after rads I started taking it at night before bed.  Not for any particular reason, I just keep it on my nightstand!  I have not noticed a difference either way and have no SEs to speak of. Mild hot flash episodes would be about it, but I have had those since chemo, so who knows!

I hope you girls don't notice you are taking it either!

Bec65

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......

Pattysmiles

I instituted taking my tamoxifen, along with all my vitamins, in the. am.  I use a different glass for my water glass for meds and then I leave it on the table.  If I have ANY doubt as to wether or not I took my med/vitamin I look to see if my glass is out.  It has worked like a charm for me.

I can't say anything about side effects being better or worse as I have not tried changing  my routine.

Pat

AussieSheila

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.

Nocompromises2013

hi smrlvr

There is a good tamoxifen thread 

I have been on it over 6mo now. I take it b4 I do teeth at night. Easier to remember ?  Haven't found it to be too bad at all )

lyzzysmom

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.

Momine

Lyssysmom, I am glad you are feeling pretty well so fast. As for hormonal treatment, you should definitely consider an AI since you are in menopause. A big study a few years ago found that AIs are more effective than tamox in lobular cancer.

mary625

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.  

Dianarose

I have been reading this thread for a few days. Every time I ask my MO a direct question about ILC he says we just don't known. Frustrating. I just read that with ILC they can't be sure if they truly get clean margins because they usually not in a lump but single file and all over the place. Very scary. I had a MRI biopsy that was IDC and a few weeks later another spot in a lower area was biopsies and it was negative. Surgeon called and said if I wanted I could just do another lumpectomy. Given my work schedule that is what I chose. The morning of surgery it took 2 hours for her to get the dam wire in my boob. I couldn't even feel it by then. When I woke up I felt for them mamosite  and when they were not there I knew I was in trouble. Every bit of tissue had ILC in it an there was no such thing as clean margins. None of the ILC showed up on any of the scans. If it was not for the IDC they would of said I was fine because the second biopsy was negative. They just happened to biopsy the only spot that didn't have cancer. Needless to say I was back in surgery 2 weeks later. They did do an onco type Dx and I scored a 6. They didn't understand that one. Still did chemo because of the 17 positive nodes. I think they should have had me skip the dam chemo and put me on Aromasin right away. When I did my tissue expander exchange I had my ovaries out an sure enough it was in one of them. I had had 2 ct scans and a pet scan and was told ovaries looked fine. After surgery the surgeon came out and told my family the ovaries looked pristine and no sign of any problems. The nurse told me I might have saved my own life by insisting they take my ovaries when they told me it wasn't needed. It is all crazy. 

aquarian23

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!

sgreenarch

Hi, I found that taking it at night was better. I have had hot flashes on and off, both on tamoxifen and on femara, and taking it at night means I sleep through them (mostly.) Don't be nervous. I've found all of the SE's to be manageable. Main thing is attitude. I have come to love these little pills and see them as one of the tools in my fight against BC, along with eating well and exercising. 

Nocompromises2013

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

Hi nocompromise - congrats on your all clear!

Speaking of follow-ups, is anyone else here been told no scans unless you have symptoms? This is according to ASCO standards, but I am very nervous about this. Early on, I had one BC say that he does not believe in PET scans or even MRIs. For follow ups though, I feel they should make an exception with ILC and do the scans. As you all know, lobular cancer is hard to feel and hard to find with any imaging. And it seems like it would even harder to find with reconstruction. My TE's and implants are over the muscle, so I am concerned about being able to do self exams. I'll never forget what my ILC felt like - it wasn't a lump and it wasn't very obvious. Then again, scans aren't always the see-all, end-all. I just read Dianarose's post - wow! I think sometimes it's just plain luck.

Bec65

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!

Nocompromises2013

thnx bc101 - pretty relieved !!

I think you have a fair point scanning with ILC !!

Marie715

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.  

karen1956

bc101....My onc only does scans if the patient is symptomatic (or if a patient asks)...I'm okay with it..really rather not be scanned and deal with the anxiety unless a reason.....he does tumor markers and labs prior to each visit, a thorough Q/A and exam.  I am 8 years out from Dx...he also uses the 2 week rule of thumb for pain.....

bc101

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!

karen1956

bc101.....Thanks.  I don't do bse, but I do "feel" my implants....they are silicone....not sure that I can feel under the implant, but I don't give it much thought.  I think mine are under the muscles....

sgreenarch

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. 

bc101

Oh, when I say scans I guess I mean imaging. I'd feel a lot better getting at least an MRI like you do once a year. I'm considering trying to argue for it because of having had ILC. Thanks for the tip.

Bec65

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

Maybe so, but that just doesn't make sense to me for some reason. Maybe what they mean is finding it earlier won't change the course of the disease??? I'm thinking that mets to bones and other places found early can be treated early. IDK, whatever....I'm going out in my garden to enjoy the sunshine. Happy Memorial Day weekend everyone!!! Don't forget the 30 SPF!

Bec65

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.

edwards750

I had the Oncotype test done. I had a micromet on my SN but my ONC said it was so small my BC was considered node-negative so she ordered the test. So glad she did. It saved me from chemo. Btw I had a lumpectomy and 33 RADS treatments. My score was low, an 11. So it's not a slam dunk if you have any kind of node involvement it automatically means a MX. There are many factors that determine what surgery you have, Diane 

Rosiesride

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

Deblc

I see at the beginning of this thread it was suggested that a survey be set up so we could input our personal info. Anyone knows if this was ever done?

Momine

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.

Deblc

Momine : OK..thought it was a good idea but it must be lots of work to get it done