Irishsurvivor

Hi am in Wisconsin also and a survivor
can we exchange emails?

I am so sorry to hear of your diagnosis. Cancer sucks but don't give up. If you can - search for the most experienced surgeon & oncologist & research what treatments have been effective,if you don't feel up to this maybe a family member/friend can do this for you. I started my journey 12/10 in Duluth, MN, but wanted a second opinion & more experienced surgeon & oncologist so went to Mayo Clinic MN. Had experienced & knowledgeable
surgeons & doctors there. The past year was a real challenge. I had a separate type of cancer in each breast,including Her 2 positive in 1 breast, double mastectomies,chemo for 6 mos.,blood clot in 1 leg, multiple blood clots in both lungs,various infections, radiation M-F for 6 wks & a total hysterectomy. It was a bear of a time,but now I am doing so much better & enjoying life,again.
I wish you the best & bushels of hugs.

So sorry to hear of you having breast cancer 3 times and of the loss of your husband. It sounds like you are a brave woman. When did you have your mastectomy? I have the same memory problems, for me it is Chemo Brain,which can be a real side effect of chemo. My oncologist suggested doing crossword puzzles & memory games to improve my brain function. I wonder if your having neuropathy (numbness) in your hands & feet,which can be a side effect of chemo. Have you tried Gabapentin for the numbness/burning in your feet, it is helpful for some people & it may make you tired which may help you to sleep better at night. I wish you well.

I'm so sorry for your diagnosis. I agree with the recommendations written by the people below. Good luck!

What is triple negative & DCIS? How do you not worry thinking okay I didn't have breast cancer in 1 breast, I had it in both breasts & each was different?
Hope your having a good day!

Before I asked about PET scans as my oncologist said now doctors don't do PET scans until there is symptoms of possible metastatic cancer. I am not sure if I'm comfortable with not having a PET scan done, just to be sure. Did you have a PET scan?

Chemo is cummulative,so not unusual to have new side effects while almost done with chemo. But,it depends on what your side effects are. I'll have my last Herceptin 3/16/12. My chemo ended 6/11, radiation ended 8/11, 7/11 started Exemestane pill to stop estrogen production. Since 7/11 have joint pain & swelling & bone pain,but my oncologist says is due to chemo effects & Exemestane. Best to keep your oncologist updated on any side effects, so he/she can determine if is normal or needs any further testing,etc. Hope you are feeling better!

I am glad you doing good & happy about having a double mastectomy. I had a double mastectomy 1/4/11,was best decision for me! I've been told phantom breast & nipple sensations are not uncommon after mastectomies & I do get these at times.
Positive healing thoughts are being sent to you!

You asked why I elected to have a hysterectomy. It was because of the association with breast & ovarian cancers & in the past I took Danocrine for endometriosis & it has uterine cancer as a possible side effect, plus uterine & ovarian cancers are difficult to catch. Also, my friend died of ovarian cancer, that by the time it was diagnosed was in her pancreas & liver. I was BRCA 1 & 2 negative so my oncologist said I didn't need a hysterectomy,I wasn't comfortable with this. The surgeon at Mayo Clinic agreed with removing my ovaries, due to our strong family history of breast cancer, but firmly argued I did not need my uterus removed. I insisted on having my ovaries, uterus, & cervix removed for the above reasons & for peace of mind. I am so glad I had this done. For me I needed to do this, but it is an individual decision for each woman. As for my double mastectomy scars I now call them life lines instead, because the mastectomies were a life saving surgery for me. I'm glad to hear you're doing well! I am doing good, tire easily but this is getting better.

Thanks for your response! Not that I want anyone to go thru this, but it's nice to know I'm not alone with double mastectomy. Did you have to adjust to new body image? If so, how? Had invasive ductal cancer stage II left breast with 2 positive lymph nodes & right breast had stage I invasive ductal cancer,Her 2 Positive. Did 16 rounds chemo,30 rads. 12/8/12 elected for total hysterectomy. Doing Herceptin infusion every 3 wks for 1 yr for HER 2 Positive,this should be done 3/15/12,then can get port out of my chest!
Hope your doing well.

Double mastectomy was the best thing I did! Knew of stage II invasive ductal cancer in left breast,surgeon said have lumpectomy. Had strong feeling I needed double mastectomy,so went for it. Was a bit nervous,told myself this was my life saving surgery,I had to do this, & put myself in God's hands. After my surgeon said I was lucky I listened to my intuition,they found a Stage I invasive ductal cancer that was HER 2 Positive in right breast,that multiple mammograms & MRI's just before surgery didn't pick up! Had moderate post after surgery,2 drains for 1 1/2 wks, was careful moving my torso or caused pain by drains. Slept semi sitting up -2 pillows behind my back,Moon Pillow under each armpit,a pillow under each forearm about a mo. First wk I dragged, 2nd wk was little better. Felt like a new women after drains out - could move better with much less pain! Personally, I thought going thru 16 rounds of chemo was alot harder & more painful. Use the pain meds they give you & let the nurses & doctors know what you need. Good luck with your surgery! I'm sending you positive healing thoughts!

Welcome. Thank you for taking the time to register and share your journey. I know we have several people on the network with breast cancer experience so when you are ready please do not hesitate to reach out to them.

I saw that you were interested in searching for people with very specific cancer types. You can use the search mechanism on the left hand side of the "People" page. That should help you to narrow it down closer to what you are seeking.

If you need anything (e.g., emotional support, help finding support/care resources, insights as to what to expect), please be sure to ask the network for help. You can do this by clicking on the "Ask Network" link on your logged in home page or the "Questions" link at the top of this page. When you post needs/questions using our question feature, we route your question to everyone in the network who might be able to help. Also, know you can use the "Update" feature on the site to keep anyone who might be following you on WhatNext up to date.

I look forward to reading how you progress. Our thoughts are with you on your journey.

- David, Founder, WhatNext