Miracle 6 months after diagnosis

Thank you LORI. I agree it is tough work. I am not good regarding regular exercise. We live on a farm so I do have to work twice a day in the barn. But I don't normally go out and exercise for 1/2 hr every day. I know they say to do that though.

Lori - thank you! I feel elated. I feel like it's a new lease on life. And I'm going to keep up my healthier eating habits and exercise! I may PM you for some advice along the way.

Marijen - only when they were removed. Surgeon wanted to do a full axillary node dissection after that but was very honest about a 40% risk of lymphedema. I declined based on these studies I found, and the fact that I knew I would be undergoing radiation and tamoxifen treatment. Plus, manage with nutrition and exercise as well, which is my way of doing what I can to prevent recurrence. The radiologist treated my nodes as well during radiation therapy, and while there was a 15% risk of lymphedema with that, I was OK with that level risk (like I said, every decision is made based on your own personal risk benefit scenario). You can't get your nodes back if they are surgically removed. You can always strengthen what's still there. Today, I am playing tennis, swimming, dancing and doing weights and yoga as I did not get lymphedema, and I'm cancer-free! So I have no regrets on the decision I made.

At the end of the day, I think we all just need to make the decision that is right for us personally, just be educated about it, and feel good going in, and take it one day at a time from there. And also respect other people's decisions, even if they are different from ours.

Anyways, here are some of the studies that I found (and shared with my medical team) which ultimately helped with my decision to not do the full axillary node dissection.

If you want a quick 30-second read, this one sums it up best:

https://www.everydayhealth.com/breast-cancer/treatment/breast-cancer-you-really-need-your-lymph-nodes-removed/

"Half of the women in the study had only a few lymph nodes removed (sentinel lymph node dissection) from under the underarm, while the other half had a large number of lymph nodes removed, a procedure known as axillary lymph node dissection. But after 10 years of follow-up, both groups had similar rates of disease recurrence and survival."

The actual studies I found at the time:

https://jamanetwork.com/journals/jama/article-abstract/2653737

"These findings do not support the use of axillary lymph node dissection when metastases are found with sentinel lymph node sampling in women with cT1-2M0 breast cancer."

"At a median follow-up of 9.3 years (interquartile range, 6.93-10.34 years), the 10-year overall survival was 86.3% in the SLND alone group and 83.6% in the ALND group (HR, 0.85 [1-sided 95% CI, 0-1.16]; noninferiority P = .02). The 10-year disease-free survival was 80.2% in the SLND alone group and 78.2% in the ALND group (HR, 0.85 [95% CI, 0.62-1.17]; P = .32)."

(higher survival and disease-free survival in the SLND - aka Sentinel Node Dissection - groups!)

"Ten years of follow-up confirm that women with 1 or 2 positive sentinel nodes and clinical T1 or T2 tumors undergoing lumpectomy with whole-breast irradiation and systemic therapy experience no worse local control, disease-free survival, or overall survival with elimination of ALND. Application of these findings in clinical practice has the potential to avoid the morbidity of ALND without diminution of survival outcomes in 61% to 83% of women with these characteristics.^19,26 The routine use of ALND for all patients with positive sentinel nodes is no longer justified based on these 10-year overall survival results."

https://www.ncbi.nlm.nih.gov/pubmed/21304082

"Among patients with limited SLN metastatic breast cancer treated with breast conservation and systemic therapy, the use of SLND alone compared with ALND did not result in inferior survival."

Now what's interesting is this study JUST came out on BreastCancer.org echoing basically the same thing, but this data wasn't available to me when I made my decision.

https://www.breastcancer.org/research-news/outcome-same-for-early-bc-tx-w-node-rx-or-sx

This echoes why I strongly believe you have to do your own research, which includes but is not limited to talking to your medical team, and then make the best decision for yourself.

marijen - To answer your question, yes, they did a full CT scan as well after they discovered the positive nodes. Luckily everything came out clear, but I have to say, the diagnostics and waiting game was probably the hardest part of this journey for me. The not knowing was actually more difficult than having answers and having an action plan. So, while it was a nerve-wrecking thing getting a full MRI and CT scan, in hindsight I'm glad for those extra tests and diagnostics as it strengthened my chosen path, and also I got more support from my oncologist and radiologist on my choices with all the clear scans too. Not a bad idea to maybe do a new topic on ALND vs. sentinel and share my learnings / experience! When I have time... feel free to PM me if you have more questions. I'm feeling very, very good about my decision today as I just got a clear mammogram and clean bill of health from the hospital! I know it's a long-term fight and journey, but today, just over a year after this all began, is good.

What did you do by the way in terms of treatment and diagnosis etc.? There's nothing listed in your profile...

purplehair - welcome back, and hope you are doing well in the path you've chosen!

pipers_dream - totally agree, I think we should all just support one another on these forums vs. judge, and learn from people's different experiences and different paths they've chosen. Like I've said again and again, I think the important thing is to do your research, understand your own personal risk/benefit scenario, make your decision for yourself accordingly. I support both those who choose an alternative path and those who choose all the traditional treatments and those who are somewhere in-between (I'm part of the latter group). If anything, I would say just be fully, fully informed vs. blindly following a path. And if you are informed and OK with the risks and benefits of the path you've chosen, that is the best, move forward feeling confident that you can do it!

I just want all of us to get through this with as little side effects as possible, whatever path we choose, and still have a chance to feel like ourselves.

PebblesV, whilst I decided to take the conventional route I completely agree with your comment regarding being fully informed. Women absolutely must research before they commit to any particular path. Do not rely on doctors alone, they are not without there own prejudices. Chemotherapy can have serious and permanent side effects. It can also kill, as I know realise. Had my cancer, (triple negative metaplastic) been less aggressive I would have chosen surgery alone. If my cancer returns, would I go through chemotherapy again? I don't know for sure, but probably not.

Good luck to everyone here who has chosen an alternative route.

Gill