ILC - The Odd One Out?

614...I started walking during chemo...DH got me to walk even on days that I was not feeling good....Over the years, I've started walking more and more. Now my goal is 15K steps/day....I don't make it quite every day, but generally I get at least 12K. I love walking outside and walk 3 times/day. Not sure if it helps with weight, but it helps with my mood. And sex drive...what is that!!!! Mine went south and hasn't come back!!

Dear Karen and Bec:  I have gained 15 pounds since being medically induced into menopause in October 2014.  It sucks.  I love walking and it will help my overall health.  As you said, I don't know whether it will help with weight, but it will tone.  I do plan to eat smaller portions and to drink more water.  That should help with weight.  It is so hard though, because I seem to be hungrier since menopause.  I am laughing at the sex comment. In a way, I am lucky.  My boyfriend started having health issues shortly after I finished my bc tx.  His sex drive has diminished too.  We are both on the same page now so there is no problem for us.  It sucks to lose sex drive though.  I am so glad that I still have a libido (although greatly diminished) and that I am lubricated.  I am off for the summer too so the time spent walking is easy now.  When I go back to school, it will be an effort to find the time.  I work 2 and 1/2 hours round trip away from home and I work approximately 13 hours days (including the commute).  Good luck to you guys.

614- Right there with you with the weight gain since starting Femara and then switching to Arimidex since the joint pain is less on Arimidex. I have walked regularly for years and so I do not think it helps much with weight loss (although, totally necessary for my osteoporosis, mental and emotional well-being). I eat organically and 80% veggies and fruits and good fats, organically raised meats for the rest. I do know my metabolism has slowed so that any treats I eat go straight to my gut and thighs. Any attempt at limiting calories results in even more fatigue than normal and an even slower metabolism. That being said, I want to be comfortable in my clothes so will add more walking later in the day and eliminate the treats for a while. It's tough when my friends eat anything, but organic and often push sweets.

As for menstrual cycles, mine were every 31 days every month no matter what until I got pregnant for the first time at 28. After that, I was regular at 28 days. However, DES was not a factor in my case. I believe my lobular was probably kicked off by the radars I worked around in the Navy and the ridiculously strong amount of estrogen that was in the original birth control pills back in the 70's. I also believe that the more they learn about the cancer cell development, the more accurately they will be able to trace back its origins, time-wise.

Here's to all of us finding strength, peaceful sleep and our senses of humor thru all of this.

Sue

I agree. I was diagnosed in Toronto, Canada, September 2014 having had mammograms annually for twenty years prior. My tumor was huge and during radical mastectomy I had 14 positive lymph nodes removed. Tiny lesions were found on my bones during CT scan; I had a private PET scan done and was told that the lesions are metabolically inactive. I was put on Letrozole (Femera) and Pamidronate every three months. I've had some bad food interactions with the Letrozole, but otherwise feel fine on it although the food interaction thing is a real challenge because suddenly all vegetables and fruits are not my friends. My friends and family want to see me go off the Letrozole because of the bad reactions and I've been warned that extended use of Pamidronate can cause secondary cancers. There is so little information about lobular cancer out there and my oncologist, while head of her department, sees me, I think, as a bit of a trouble maker for her. I am 67 years old and otherwise I feel quite well.

614...I too was a premie...7 months (about 9 weeks early). My hormones were out of wack years ago, I had a leuteal phase deficiency and had to take progesterone to sustain my pregnancies...this was diagnosed after 2 miscarriages...in all I had 4 miscarriages (possibly a 5th very early) and I have 3 children. I took the pill in the mid to late 70's and then around age 45 for 3 months to deal with peri-menopause symptoms, but the pill was worse. My youngest daughter was born just before I turned 42.

I just chalk up having breast cancer to having boobs (well I no longer do)!!! No real family history.....there is some on my grandfather's side but not close relatives so I don't really consider it a factor.

Bec and 614 what do you do in the schools? I'm a School Psychologist and love my summers!

karen1956 and 614, I'm an adult ed teacher -- high school equivalency test prep and LOTS of life counseling. It's super rewarding because the students all want to be there for this second chance, but it's hard because all the problems that kept them from completing high school the first time are still there. Having cancer got me off my butt from being a paraeducator for 8 years to pursuing my teaching credential. I should have it completed by the end of July. It's funny what you think you can't or shouldn't do all your life, and then cancer turns that upside down. Cancer is a sucky messenger, but I got the message and am living my bucket list -- happy days!

I agree.  Cancer sucks but I have made many new friendships and I became part of the dragon boat team for breast cancer survivors as a direct result of bc.  That is a positive outcome. 

I used to work in an alternative high school at night when I lived in NY.  Now I work in a school with very needy students.  I like working with the "at-risk" population.

Dear Nanka:  My team is planning to go to Italy in 2018. Dragon Boating is hard but a lot of fun.  I'm glad that I am on the team.  It is a breast cancer survivor team called Team SOS (Save Our Sisters).  The other people who paddle on the boat are on Team Blazing Paddles.  Our captain is awesome. I can't afford to go  to Italy but I will be with them in spirit.  I am not good (overwhelmingly unathletic) but everyone makes me feel like I am awesome.  It is a great feeling.  Maybe we will meet sometime??  That would be nice.

Pleomorphic ILC sucks.  I am always worried about a recurrence.  I feel extraordinarily lucky that I was diagnosed early.

Dear Nanka/Michelle:  I agree, Dragon Boating is awewsome.  The story of how it started for breast cancer survivors is so interesting.  I found out about Dragon Boating from the person in my breast cancer support group who organized the team.  I only raced once because I am not good so I let the others race.  I go to practices whenever I can.  It is amazing.  I certainly understand about finances.  I am a single parent with 2 kids - one in college and one who will be a senior in high school next year.  Money is very tight, especially with all of the medical bills.  It is good to see 10 - 30 year survivors.  It would be nice to meet you someday.

Sherri

I worry about my kids too.

I worry about my daughter because she had a benign 3cm X 4cm fibroadenoma removed when she was 17.  Given her history, and my history, plus the fact that I have a VUS (Variable of Unknown Significance) possibly for the colon, that was found in my genetic testing, I am hoping that my kids will be ok.

I am so sorry for the loss of your brother.  Good luck with your results.

thanks all!

Hi Linda, you are so close to me (well relatively)! I am in Manitoba, Canada, just 2 hours north of the border. If ever you come up, make sure to look up our Chemo Savvy team! You may get a chance to paddle with them at practice...that would be so exciting! We've been to competitions in Bemidji...small world, eh?

Hi,

I was dx with IDC until after surgery. The diagnosis is ILC. They found 2 more small tumors in my left breast and LCIS in both breasts. Also microcalcifications. I had my bmx on 8/8 and have severe nerve pain (burning hot needles) across my chest.

I'm 46 5' 2" 112 lbs. Don't smoke, eat well, do yoga. I do have family history. Had my child at age 38. I have my first appointment with an Oncologist on 9/15. I'm not sure if chemo will be recommended, probably tomoxafin.

Thanks for reading my intro...and for starting this thread!

Gaea