Calling all TNs

Jianchi -- don't worry about the post of the article -- there was good news there -- money is being spent specifically for TN research and that is GOOD. I went to my GYN last week for the first time since surgery. He even said that doctors still are just shaking their head over TN, but that research is going on and soon something is going to surface that will provide a targeted therapy.

I didn't realize that Michelle had initially turned down chemo. I went back to her blog site. I looked back to 2010 when she was first diagnosed and she partly based her decision of no chemo on an online tool she had found that told her chemo would only add a few years to her life expectancy. Here is what she wrote:

"The result is that there is a 22.6% death rate from cancer within 15 years. Having no chemo treatment shortens my 24 year life expectancy to 20 years. If I proceed with the CMF chemo protocol, it buys back 229 days. Hmmm.... and that doesn't count any impact from the chemo, like leukemia. I would go through chemo hell for 229 days...doesn't sound like much of a deal to me."

I tried the tool out myself and it told me it would add 2.5 years to my life expectancy if I chose to do chemo. But its a bit confusing (because it said without, it would cut life expectancy by 5 years) and it has several ways to look at it. It also showed that without therapy I would have 77% chance of being alive and cancer free in 10 years vs. 85% with chemo. The tool my doctor used showed (for my specific age and diagnosis) that without chemo I had a 52% chance of being alive and cancer free in 10 years and with chemo that chance increased to 73%. Either way, looking at the percentages shows improved life expectancy with treatment but I definitely like 85% better than 73%. Anyway, we never know whether it will work for us or not, so it comes down to a personal choice.

slowloris I understand how you feel because I took it as hard as you about our wonderful vivacious Michele and feel very depressed. I didn't know Naan so well but each and every passing is a blow. Mainly because we get to know these people so well usually and we love them because they are our sisters but we are unable to stop this happening although I wish we or someone could. It does cause depression but you still have a life to live and the ladies that pass would like you to go on and live this life. It's hard to go on hearing about these ladies and also with worrying about how we are doing but it helps to surround yourself with things that you love or things that you love doing be it exercise, immersing yourself in good books, playing with your grand kids or a hobby you might like doing. The girls would hate it if we gave up because of something we have no control over. Thinking of you and sending a huge big hug.

LovinMyMom your mum was a wonderful lady who was willing to give anything a go. She was always happy and in for anything that came her way in the way of travel and so enjoyed her trip to Paris. She was also excited about getting her RV. She did love her travelling and she adored her Rick and her family. You must be so proud to have had your LUV as we were all so proud to have known her. I pray every day for a cure for this dreaded disease. Michelle is flying with the angels now and free from cancer at last. I just loved her so much and she will always be in my heart as she will yours. Love to you and your family always.

Thank you so much Kathy!! My thoughts are with her family at this time.

Navymom-Thank you as well.

Greetings ladies! I am just so thankful to be able to log in and be connected with a wonderful group of women!  Life is a gift enjoy it!!!

SB and NavyMom, thank you for your input. I think the reason they decided against chemo or radiation was because the IDC was small. There were three areas of IDC within the DCIS measuring 0.1, 0.1 and <.1mm. I'm still very worried that it's going to come back. And I don't even know how they will know if it does come back. I am seriously thinking of getting a second opinion.

Thanks again!

P.S. I'm an Air Force veteran. I service 4 years active duty and 2 years reserve. My nephew just separated from the Army after service 6 years and 3 tours to Afghanistan and Irac.

Tif - my followups were every three months for 2 years and then every six months from that point. I remember being so shocked after chemo and rads for the onc to say I'll see you in three months. It seemed such a huge amount of time after seeing medical staff so frequently during tx.

I was an English teacher for 25 years, and I loved to teach writing skills. With Michelle's passing, I'm reminded of the power of words on paper (or screen). So many of us have expressed the sadness of losing a person few of us have ever met face to face. Michelle was such a special person. I'm so glad I got to know her, even if just on paper.

Grateful for BreastCancerOrganization for helping so many people get through our cancer challenges. Jan

Special Hugs and Peace to LovinmyMom.

Thank you Titan for some great news!!!

5th Sib, thank you for your post about Luv and I'd like to add to it.

I had to come back to address something that was discussed here on the board.

Someone mentioned that Michelle had started out at such a low Stage at diagnosis but progressed so

quickly. Someone else mentioned that she hadn't taken chemo.

I don't want to scare or worry anyone but in the interest of honesty about this disease, I want to present the truth and reality.

Michelle and I both started at a similar stage. I had a long discussion with her about why she didn't do chemo the first time. (Don't hold me to the exact percentile because I've forgotten, but I know for sure that there was only a 5% difference in the options she was offered). She did her research at her first diagnosis and found that because she was early stage that

if she didn't take chemo she had a 70% chance of no reoccurrence and if she took chemo she had a 75% chance of no reoccurrence. Because of the effects of her diabetes, she decided that the damaging effects of chemo were not worth it for a 5% less chance of reoccurrence.

Now the flip side of this is that despite being at similar stage as Michelle I went for the the whole enchilada, chemo and radiation. My reoccurrence came only 6 months after I completed treatment.

What I'm trying to tell you (as Cocker says so well) it's a crapshoot. The majority of us with this disease will go on to live long NED lives. A certain subset of us (due to more aggressive tumors, age at diagnosis, chemo resistance or any multitude of undiscovered factors) are doomed from the start. This may sound like cruel information but it is the reality of the disease.

Michelle and I had a long chat about letting go with "what If's". I learned from her first decision, made different choices and made out no better than she did.

I just wasn't comfortable with people second guessing Michelle's choices or leaving with false reassurance without knowing the facts of the situation.

adagio - thank you for your reply. I am glad that acupuncture has been working so well for you. My acupuncturist also works with many cancer patients. I was also told that going during chemo will help boost the immunity. I will begin chemo next week and will be on AC+T as you did. Hope I can get through it smoothly. Wish you all the best!

Thank you my dear Kathy. I am so glad to see your post. It broke my heart that our little lady who had so much compassion for everyone, was so full of knowledge and helped us so much, was so very caring, was happy and so contented with her life, who just wanted to live and had so much time for all of us, to be taken like she was. I pray that she didn't suffer with pain and that God is taking really good care of her.

With the topic of chemo or no chemo. For me personally I believe that what is in store for us is what we will get and nothing or nobody is going to change that. All the worry and anguish is so pointless and won't help us at all, yet I still worry because I must be the worlds greatest worrier. Only one knows when its our time so that's why we should live for today because we don't know what is around the corner, hopefully many more years to come.

Keep posting Kath cause I miss you and all the ladies on here.

Kathy: Not cruel information at all... your post, so sensitively written, does a great service to the members of this community and honours our dear Luv's choices and journey. Thank you for that. Thank you too for your friendship and support of Luv and carrying our best wishes to her in her final days.

Tazzy guess what day it is here, the day before Friday yay. That really made me laugh. My pulse is working fine!