My mom was just diagnosed with ILC: Chemo or not?

I can totally understand your fear for your mom, but we need more info. What is her age? What does she want to do? Very important questions!

That's really something your mom needs to discuss with her doctor.  Has she gotten a second opinion from another oncologist?  That might help her come to terms with whatever decision she makes.  And if the two doctors have polar opposite views on the subject, get a 3rd opinion.  

Most of the people posting on here are not doctors, and are really not qualified to evaluate what treatments your mother should have.  Any posters on here who are doctors would probably never even attempt to answer your question because it would be completely irresponsible of them to do so without extensive review of her medical records, and examining her.  So, while people can tell you personal experiences and views, they can't really tell you what is in the best medical interest of your mother.

I can tell you that any memory effects were extremely temporary - if you ask me, it feels more like when you're totally exhausted, so tired you can't even remember your name (I hope you understand what I'm saying, I never did actually forget my own name), rather than some awful memory loss to be feared.  It goes away as soon as you stop chemo.  Your results may vary.

Yes, she will lose her hair, and have to wear a wig for a while.  But, my hair grew back.  It's long enoug to put in a normal pony tail, it's about 1/3 of the way down my back - not as long as it was, yet, but it will be.  I've actually had it trimmed several times to even out the layers.  Chemo curls suck, but a relaxer can overcome that.  I never had white fuzz that I've read about on here, it came back the same very dark brown it's always been.  Again, your mom's results may vary, and since she's older than I am, her gray to color ratio may be different - obviously if she already has gray hair, my results in terms of the color coming right back will be different for her. 

I can't tell you what percentage of women get leukemia from chemo.  My blood counts were always good, so it never came up in coversaton.  I don't think it's a huge number, though, but that is certainly something you and your mother can discuss with her doctor.

The only safe advice I can give you would be to get a 2nd opinion, and then do your risk/reward analysis.  Good luck!!

First, I'm so sorry you and your mom are going through this.  Second, I might advise to stay away from Dr. Google for a while. The risks of chemo are there, yes, but as with any drug, insurance requires that they list every POSSIBLE side effect, even if only a few people out of millions suffered them.

You can see my dx/tx below.  I did lose my hair, but for about 5 months only. By the time I was done with taxol, it was growing back enough that I felt comfortable getting rid of the wig.  I loved my chemo curls because I never had curly hair before! I lost weight on chemo.  It was all a real PIA, but passed more quickly than I thought it would when I started.

Because of my positive nodes and the knowledge that ILC is harder to detect, I opted for everything my body could handle.  And I have had no long-lasting side effects from all the chemo and rads I  got .I'm 54.  I'm all for second opinions, but my suggestion is not to wait long to get one.  The sooner there is a tx plan in place, the sooner you and your mom will have this scary time behind you.

Hugs,

Claire In AZ

some great advice above ....

as to the disabled question (everyone is different comment really applies here) ... i had 6 months of chemo - every other week - i took medical leave because my job didn't lend itself to the many periodic breaks i would have had to take to get to the various medical appts - i got tired but never nauseated, went out to restaurants, friends homes, etc  in fact i gained 15 pounds - i had a bit of trouble with my sense of balance so my husband held my hand while we walked our 1-2 miles at night which helped me fall asleep faster - rather than nap in the afternoon we would watch a movie - one piece of advice is when my hair started to fall out i decided to try to wash it out (ack !!!! what a mess in the shower - there i was dripping wet, trying to clean up the huge hair mess, crying, etc ... not a pretty sight) ... highly recommend getting a shorter hair cut before chemo and then think about getting it clipped (not shaved to avoid small cuts) off when it starts to fall out ... while i was on chemo we built a large raised-bed veggie garden, got my chemo and hopped in the car and we drove 1200 miles to visit my parents for christmas, drove back 1200 miles to get chemo on time .... so if she decides to do chemo have her talk with her oncology nurse about the practical everyday preparations so she can be prepared ....

best of luck to her ... i was 53 when diagnosed ....

Chelsea, I have reiad on here that you do have to wait some to color your hair - but I think since your mom is a hairdresser, she might even know the answer better than anyone else!!  I think people used temporary dye sooner than 6 months.  To be honest, I wore my wig for like 6 months after, until my hair was below my ears and I had bangs, so even if I had to dye it, it would've been the recommended 6 months anyway.   I think the waiting has to do with your hair when it first grows back is a bit more brittle and delicate than before, but after 6 months, the new growth is stronger. 

For me, chemo was do-able, and definitely not disabling.  I went to the gym, and did everything I needed to do.  But, it's a really personal experience, so I can't tell you how your mom will react.  What I can tell you is that it could become a self-fulfilling prophecy, so I hope if your mom does decide on chemo that she realizes that she won't feel perfect, but won't focus on it.  The anti-nausea medicines they have these days are remarkable, you feel barely even queasy.  Just keep hydrating and everything will be fine.  I walked around with my bottle of water and bottle of Vitamin Water Zero, and did just fine.

Hi, I did chemo, live alone, didn't work and found it doable. The worst part was the hair loss and waiting for it to regrow. Please check out the Cold Caps thread here for options to keep hair.



I agree to get a second opinion and the Oncotype test if your Mom is eligible.



There is plenty of advice on this site about how to get through chemo.



Keep in touch.

I hated being bald more than anything else about chemo, including all the other side effects!  We are defined by our hair, so many of us, right?  Anyway, my happy ending to my chemo story is that I did cut my hair short (it was below my shoulders, straight and highlighted blond for many years) before it began to fall out completely.  I had NEVER had my hair short before, ever. 

I received so many compliments on my short 'do that I was amazed.  People I didn't know very well even told me I looked younger, that it opened up my face, that I looked really good.  When my hair started growing back, I decided to keep it short (I'd paste a photo but I can't figure out how to do that!)I did highlight it when it was about 2" long. I have a really great stylist who's a close friend, and he's a magician.

I don't have to curl it, blow it dry, or even wash it every day.  I love the freedom and "lightness" of super-short. I thought it wouldn't be feminine enough, but I wear a bit more girly stuff (earrings, blouses) now and I love the whole look.  Don't be afraid of change. Sometimes there are silver linings in very dark clouds.

If someone can tell me how to attach a photo, I'll post one.

I looked into the cold caps thing back in Nov 11 when I started chemo but found them to be really expensive.  Have they come down in price  any?

I second what everyone has said about chemo being doable, though I was very tired. However, I must have had a different chemo regimen than is being proposed for your mom because I had treatments every 2 weeks, for a total of 8. The regimen was called AC/T. With 3 weeks between treatments, I think your mom will be feeling good a lot of the time. However, if she is a hairdresser and has to do a lot of standing, that is probably not going to be very workable.



I did not use cold caps. There would have been no way to keep them cold where I was treated, and they are expensive. I ended up loving my wig. I was able to color my hair about 3 months after final chemo.



With a positive lymph node, I don't think you're going to be able to get a test like the Oncotype to help with the decision on chemo.



I have no lasting side effects from chemo whatsoever (that I know of...knock wood!).



It sounds like your mom's situation is very treatable and that things are going well already (i.e., the good margins). I wish you well in your decision on chemo.

mine and my sister's hair came back same as they were before chemo ..... and i was sooooo hoping for auburn ....   peach fuzz here too to start out ... at first mine was a bit thicker in back than the top front but that evened out over time ...

I just want to add ... Regarding the leukemia risk -

I had Taxotere and Cytoxan 4 times, 3 weeks apart.  When I asked my oncologist about the increased risk of leukemia she put it in perspective.  Her risk of getting leukemia is 1/2 percent as she's never had chemotherapy.  Mine is double hers - one percent.  I am able to live with that risk!

Your mom's oncologist will be able to interpret exactly what the risks of chemotherapy are so she can better understand them.

Prayers for both you and your mom.

Chelsea - bless your heart what a good and loving daughter you are. Your mother is lucky to have you. As others have said none of us are doctors and our opinions/advice would be just that - our own personal experiences. Still our experiences will at least give you an idea what others have gone through when faced with a similar dx. Doesnt mean your mother will/or wont. I did not have chemo but I did have RADS - 33 of them. They were not bad at all except for a little burning and fatigue. The Oncotype test actually spared me from chemo because the results were good and my number was low. I have Stage 2, Grade 1 with a micromet in the SN. My sister, however, has ILC. She had a MX but no chemo and no rads. She currently takes Arimidex and I take Tamoxifen. There are no right or wrong answers given it is your mother's life but what I will say is in this game of Russian roulette that we play with bc I would throw everything I could at the beast. No matter which way your mother goes there will be SEs. Some worse than others. Maybe you and your mother should consider a second opinion just to be sure. No crime in that and a lot of women on this forum have done just that. We are here to help in any way we can. BC is not a death sentence anymore. Diane

Chelsea, I did cold caps - I posted above on May 19. It was well worth it for me and it contributed to my feeling of normalcy throughout treatment.