Need to hear from SURVIVORS!!!!

Warrior2014

I need to feel positive energy from long-term survivors of Stage 3 ILC.  Chemo almost completely annihilated my primary tumor, and if that's all that I was dealing with, my final pathological staging would have been a Stage 1.  However, my lymph nodes were only "beat up" by the chemo, and 17 nodes were positive upon final pathology; so, I remained a Stage 3 after surgery.  The tissue expanders are from HELL, and I feel like I have an XXS metal girdle on 24/7; it's awful beyond words.  

If you've really focused on integrative or alternative methods, and you're more than five years out, I truly would love to hear from you.  What have you done (or not done) that you think has made a difference???  If you had expanders from Hell and got significant relief when you had your reconstruction, I would love to hear from you too.

I have a LOT to live for, and MUCH left on this earth to do!!!!  

My thanks, fellow warriors!!!  Wishes for good health to you all.

Racy

Hi Warrior2014, tomorrow is the fourth aniversary of my diagnosis with stage 2 ILC. I had a lumpectomy, TAC chemo, rads and now take Femara. I believe the TAC and Femara are proven to be very effective with ILC.

As far as complementary therapies, although I aim to be diligent about healthy habits, I don't always succeed. But here are a few simple things that I have adopted and believe can help: 

1. drinking green tea (several cups per day);

2. daily low dose aspirin;

3. daily vitamin D tablet.

4. focus on being as lean as possible (most important, according to my onc);

5. exercise.

If I didn't eat a lot of foods containing Omega 3, I would take a supplement of that.

Best wishes to you.

Warrior2014

Thank you, SO much, for taking the time to respond.  I truly appreciate your thoughts.  My best to you.

Holeinone

Warrior2014, I am 10 months post chemo, 15 months from dx of stage 3, stinkin lobular breast cancer. 

The post above from Racy was all good. That is my regimen also plus a few others, Tumeric, probiotics. I take Arimidex daily & yesterday had my 2nd infusion of Zometa to help prevent bone metasis. 

It's all a nightmare in my view, but we have to keep moving, find joy & keep in mind that it could be worse....

Warrior2014

Hi.  Thank you.  Are you having any side effects with the Arimidex?

Holeinone

I have some bone & joint pain. But, I am 59 years old. I am very active, play golf & tennis, walk for miles. I try to keep a more structured sleep schedule now. 

The constant worry about the lymph nodes ( mine were matted & bursting out with cancer ) & the fear of metatastic cancer is still with me, all day every day. My stragety is to keep busy. I want to be in denial, but my head won't go there.....lol...

sgreenarch

Hi. I would add a few more suggestions:

1. Eat organic produce and dairy when possible.

2. Try not to eat too much dairy.

3. I loved this book, 'AntiCancer,' by Dr. david Servain Schreiber. Think everyone could benefit from it.

4. Do all that is within your control (many of the suggestions for improving diet, lifestyle, as well as complying with traditional medical course that youve chosen) to prevent recurrence, then try to focus on living what God willing, will be the rest of your long life. There are a whole lot of survivors out there. It will get easier.

vlnrph

I can also suggest the AntiCancer book (it's for sale at the boutique my clinic runs which also supplies scarves, hats, greeting cards, etc.) I plan to use his DVD at our local support group meeting since some people absorb information better from an audio/visual perspective than by reading.

As far as survivorship, like racy above, I was stage ll but am going on 4 years. You might want to post your appeal on the forum specific to that diagnosis although those gals may be mostly IDC...

vbishop

One year out, only a stage one, but responding about tissue expanders.  I felt like I had a steel cage...or the metal spiked bra Madonna used to wear.  Anyway, all that goes away with the exchange surgery...which is a piece of cake.  No drains (at least for me - don't know if others have had to have drains), showering in three days, out walking the following day.  Night and day - there is no comparison.

For what its worth, many ILC women are stage III because it's such a sneaky sucker and hard to find.  Suggestions you received so far are spot on. 

Good luck.

Warrior2014

Oh, good to hear!!!  Thank you so much for taking the time to reach out to me about this.  The TE's are from HELL, and any positive response I get about relief upon final reconstruction is wonderful news!!!!  My best to you.

KSil

Hi Warrior,

My tissue expanders were horrible, but after my exchange surgery I feel great. Reconstruction is a long road, but I am nearing the end. I am optimistic about having a long future ahead of me.

Karen

momand2kids

Stage 2- 6 years out--- these are the things that I was doing (most) and then kept doing after dx with some new activities/attitudes added 

Exercise (which I was doing before) almost every day--walking, running, swimming, elliptical training--whatever I can fit in whenever-- always try to have 10,000 steps

fruits/veggies

regular sleep cycle

religiously took femara/lupron combination, then just femara

Reconnected with my faith (loosely, but it was a good thing)

Religiously went to every follow up appointment, mammogram, MRI

Got a dog (my kids wanted him forever, I finally said "what the hell"). you know who is taking care of him

Kept my journal habit going (from when I was 10)

Went to therapy to work out the feelings  I had about bc

Say yes to anything that is social-- reunions, get togethers (before I would sometimes be "too busy")  no more- Love to be around people

Told those in my life who were important just how important they were

Changed my focus in terms of my career--- it is important, but I leave at 5 now.... and I don't bring work home with me.

Laugh alot-- listen to comedy in the car- listen to my kids-- 

go to lots of movies--love the movies

Believe that I am completely cured and that I did everything possible to make that happen

Don't waste one minute of time thinking about cancer.... it got almost a year of my life--fair enough, but no more. 

Warrior2014

Thank you, Karen, for the positive story!!!!

All my best to you for health. 

Warrior

Warrior2014

Thank you, Mom and 2 kids, for taking the time to share your experience.

All my best to you for health.

Warrior

paige-allyson

It's been 7 1/2 years since my initial diagnosis. So far so good ☺️

I stopped drinking alcohol, exercised like crazy, and followed a mostly plant based diet. There's been a bit of drift over the years in terms of healthy habits. 

My expanders bothered me at times- implants were a big improvement.

Things will get better for you I expect. It's hard to deal with this stuff- especially early on.

Warrior2014

Hi, Paige-Allyson!

Congratulations on your HEALTH!  I appreciate you writing to me, and giving me hope.  It's such a valuable commodity right now, as you clearly know.  Thank you for addressing the sub-issues, too!!!  Please keep in touch.  

Best wishes for continued health!!!

Warrior

jenni__ca

doing great here !

Warrior2014

Hi, Jenni!

Thank you for responding!  Congrats and best wishes for continued good health!!!!

Warrior