Calling all TNs

Hello everyone. I am one of the old timers on this thread. I just popped in to leave a message of hope to the new members. I was diagnosed in 2011. In 2013, 9 months after my initial round of treatment, I relapsed. At that time, because of my quick relapse, they told me that realistically I probably had 2 1/2 to 3 years to live. I was terrified, as I was trying to outlive my elderly Mom.

Well, that was 7 years ago, and I’m still alive and kicking. Don’t ever lose hope. Many of us survive this disease for many years, and every day there are advances in treatment. Believe that you will survive

kathymn your story is wonderful -- thank you for sharing it! Bravo!

Here is my situation. Triple Negative plus BRCA2. Prior to the genetic test results my doctor recommended a lumpectomy with 5-6 months chemotherapy before and radiation after. I had gotten a 2nd opinion and they agreed. The 1st doctor had said there did not appear to be any spreading to the lymph nodes based on the MRI but would perform the sentinel biopsy anyway during surgery to be sure. The 2nd doctor agreed but also said if it were to spread it wouldn't necessarily go to the lymph nodes first, which contradicts the reading material they gave me. Anyway, all of that is probably moot due to the BRCA2. The 1st doctor said that result means high risks for breast and ovarian cancers plus melanoma, but the latter two can be dealt with after recovering from surgery with the removal of the ovaries and tubes. But treatment recommendation is bilateral mastectomy with optional reconstruction. If I were to have the lumpectomy instead there would any 80 percent chance of the cancer returning in that breast with the possibility of spreading to the other breast.

The survival rate I was given is 85 percent, but she didn't say how many years. A Google search tells me that survival rates are given in 5 year increments. Why is it calculated that way? Do they reassess every 5 years?

Thoughts on all of the above?

Sorry for the lengthy post.

In addition to using that tool that MountainMia has referenced, you can use this tool to evaluate your BRCA2 statistics:

http://brcatool.stanford.edu/brca.html

You can specify your type of monitoring and your age at diagnosis and age when you would have a BMX and ovary removal. It will give you the risks by age 70, with or without mastectomy and ovary removal.

The "predict "tool is more meaningful to evaluate your current situation with respect to size and lymph node involvement, and the brca one is more relevant for your long term planning. Since triple negative tumors will pretty much always be treated by chemo if they are larger than 0.5cm, there isn't really much for you to decide in the short term. The main decision you need to make is if you are going for the BMX given your BRCA2 or not. I have a friend who is BRCA 2 and triple negative without lymph node involvement and only had lumpectomy and radiation, with tight monitoring, one MRI per year and one mammogram per year. I feel from reading here, that most people decide for BMX though with BRCA2. But in the end it is your decision to make.

Good luck and you will get through this!

The stats get you part way but not all the way, because the single most important factor is response to chemo, which is hard to predict with TNBC due to the different subtypes of the TNBC as well as the differing immune systems of the patients.

Also important: survival for TNBC is VERY good for the women who get past 3-5 years with no recurrences. My MO told me he personally had never had a TNBC woman who recurred after having 3 years clear; recurrence is usually quick if it happens. So as daunting as TNBC can seem, there is the silver lining of getting to be "done," and pass out of the window of recurrence. Of course one can still get a new primary.

Congratulations, Santabarbarian. It's such a huge relief, isn't it? I passed my three year mark (from surgery) back in April.

Santabarbarian, hooray hooray!! That is such good news. And Trishyla, 3 years since surgery!!

I'm not sure everyone can understand the "birthdays" we experience. We get it here.

In mid-June I started time-restricted eating, aka intermittent fasting. For me that means that most days, I am fasting at least 13 and usually 15-16 hours. I'm generally done eating between 7:30-8pm every night (very rarely later) and have been skipping breakfast. Most days I wait until about 11:30 to eat some lunch. With summer it's easy to eat a lot more fruits and veg, so that's a bigger portion of my diet. And with generally eating less, especially at breakfast, I'm eating less of the simple carbs, or even whole grain carbs that I would normally have early in the day. Likely this is good for my triglycerides.

I have 3 goals for the time-restricted eating:

1) Lose a little weight. I am healthy BMI but had put on the 3 pounds that made me uncomfortable, and then there is the other 5 pounds that was always the "I wish I could lose 5 pounds." So far I've lost the first 3. If I could lose 3 more that would put me into pretty happy territory.

2) Manage my glucose/insulin levels. My glucose generally ranges just under 100, so again in healthy territory. But I have a lot of type 2 diabetes in my dad's side of the family, even for those not overweight, so need to make sure I take control of this. And elevated glucose and insulin are shown to be related to higher incidence of and mortality of cancers, including breast cancer. Which takes me to goal #3.

3) Reduce my risk of recurrence and new primaries. Obviously, it's easy to see changes in my weight with a decent scale, and it's not too hard to get my blood checked a couple of times a year to check my A1C. But I won't know if I'm successful with this goal until nothing bad happens.

I have a follow-up ultrasound scheduled in early August but no other appt until November, assuming the US is all okay. (That's another thing "patients" get: studying the calendar for scheduled appointments.) I plan to stick with the time-restricted eating at least until that November appt.

Congrats trishyla!!!!! Always grateful to hear such positive news.

Congratulations ladies, cancerversarys are great. You are so right Mia, other people don’t understand in the same way that we do. I announced my cancerversary at dinner to my family last time, thinking they would be happy, but it just reminded them about something they don’t think about any more, and don’t want to think about. They just didn’t get it at all.

I lost a fair bit of weight after treatment as a way of reducing recurrence risk. As I don’t smoke or drink much and already took plenty of exercise it was the only thing I could really do. It has been creeping back on over the last year and I’m trying hard to cut out carbs now, with some success

My mammogram has been cancelled as it is a non-essential procedure and the hospital is reducing these due to COVID infection risk. To me it sort of seems essential.

Thanks, everyone. It's really nice to have the support of all you wonderful ladies (and men) on this site. You get it in ways our friends and families simply can't.

Just as a further reminder that you can beat triple negative, I belong to a support group in real life led by a woman who is more than 20 years out from her diagnosis. She's a wonderful person who gives me hope.

Be well and stay safe!

Trish

Hopping on to say Hello to all on this thread and to let you know that no matter how long since my last post, I still think of this thread as my lifeline when I was first diagnosed - it will always hold a very special place in my heart. It's 11 1/2 years for me last February. My prayers and thoughts are with each and every one of you. Stay strong and never ever lose hope. Hugs and serenity to all of you.

Linda

Hi Linda, I know your name! Congrats on your milestones, and similar to you, I've reached my 8.5 year victory in early July. I echo what Linda said. Much love and prayers to everyone on here.

hey all,

I haven't been back in a couple years but I wanted to check in and give a little hope for those just starting their treatments. I looked to this group for hope and information when I was going through treatment.

I was just 30 years old with a 4 month old baby at home when I was diagnosed with stage 2 TN. I had no family history and was extremely healthy and active. I did 8 rounds of taxol that was stopped because they believed it wasn't working... moved on to 4 rounds of AC. Then a Bilateral Mastectomy. I was geared up for a clinical trial having chemo and radiation together because they were afraid my intial treatment had failed. I remember being terrified... feeling like I was going to die at 30 and my daughter would never even know me....

Then things changed.... my results from my surgery were a PCR!! The best news a TN can get... I got to skip the rads and extra chemo.... I was so thankful but so scared. Thinking I needed to do more. I hated treatment but I was afraid to leave. To be honest finishing can be as hard as active treatment....

Fast forward to now... On July 23, 2020 I will celebrate 5 years since my last chemo treatment! On top of that I went on to have my second baby in December of 2017... I was told chemo had left me infertile but it didn't! Noah was 9 lbs and is a healthy 2.5 year old boy how!

Cancer is scary and you hear so many sad stories but survivors are out there! They just don't come back as much. It's scary for me to check these sites. That fear never left for me but I'm still here and I feel healthy and strong. Hang in there 💛

Thank you to all TNs that keep posting and sharing their life., this means a great to me to know there is hope.

Congratulations LillieRose!!