The Other "C" Word:

Tina,


Although I am not NED, I couldn’t resist the opportunity to post my comments. I have followed your story, as well as the stories of others who are NED, for some time. I have found your experiences to be fascinating and encouraging even though I may never be NED myself. That has not prevented me from feeling great joy for you. I have noticed that many people who are NED are HER2+. I have read about several people who have been off treatment for several years. That fact in itself is amazing in light of the fact that not so many years ago there were few effective treatments for that population.


So, here are my two cents. I choose to believe that many of you who have shown no evidence of disease for several years are, indeed, cured. Will some of you suffer a relapse at sometime in the future? Who knows. Nothing is certain. What is most striking to me is that it takes courage for a physician and patient to stop treatment in the face of NED. There are those unknown factors. Are you cured? How long is long enough to continue treatment before deciding it can be stopped? You and others like you, as well as your oncs, are true pioneers for others coming along. I realize that you will continue to be monitored, but it still takes a certain leap of faith to do what was unthinkable not long ago. I hope and pray that mbc never again appears in your life.


WOOHOO for you and others like you.


Hugs and prayers from, Lynne

So I haven’t been NED for long. I had a complete response to chemo save for a 7mm node that was moderately active at round 4. I assume my last two rounds kicked it , and if it isn’t, my mx and SLNB did (according to my MO) . I haven’t had a scan since December , but one coming up soon. Anyway , I wanted to pop on and say that my MO Is going for curative intent with me. Will it work ? I don’t know , but right now it’s promising .. so she’s believing i can be . She says so cautiously. I think it’s possible :

Tina, I agree with Lynne, everything I've read said HER2-positive cancers will be cured first and easiest, and I have no idea how many of you guys may be walking around already cured. ER-positive cancers are sneakier and can hang around dormant for decades, only to awaken and cause havoc. However, oligometastatic cure rate was estimated by MD Anderson at 25%, and that was five years ago. But with immuno and CAR-T and treatments on the horizon, we might also get there..

Great thread title, Tina!

I have taken an intermediate path: dose reduction. I haven't set down my meds just taking a low dose of 5 mg Tamoxifen. Now 11 years NED and on anti-estrogens I hope to go another 4 years on this dose. 

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3878717/

"The fact that dormant micrometastases stay in distant organs for many years suggests a long evolutionary process of these cells after their departure from the primary tumor. During this time, independent genetic and epigenetic traits may arise and drive the recurrences which will not be present the original primary tumors (59). Thus, it may be necessary to examine the metastases from patients with late relapses and compare them to the primary tumor and early metastases to decipher the genetic or epigenetic alterations that lead to late recurrences. Other factors may also confound the prediction of late recurrences. Some late recurrences may exceed the detection threshold, but are asymptomatic and undetected till the patients are deceased."

They are talking about early stage here but NED is NED, some relapses are early, some late. They also give an example of an ER+ woman with kidney stones who was found to have bone mets upon CT 22 years after primary diagnosis.

I do believe it is important to maintain strong bones, ie, maintain the balance of osteoclast differentiation (see Figure 2 in article), and do regular strength training for that. 

My onc wants to know at each visit whether my weight is stable (still yes) and whether I am exercising (still yes). I don't really talk about the future with my onc. But if I were to stop my meds at the 15 year mark, I would first want to do a CTC test, a DEXA scan for bone density, maybe a full body CT (which I haven't had now for 4 years), and Zometa infusion (which I haven't had for 6 years), just for one last osteoclast inhibiting drip. I probably should start discussing these things with my onc. Maybe throw in a gene sequencing test as a baseline for genetic or epigenetic alterations. By then my insurance would probably prefer I just continue with my cheap drug.

Thanks for letting me ramble.

Tina, great topic for discussion! I am into my 8th year of NEAD. My doctor has never mentioned the word cured and frankly, I haven't asked. I can take risks when it comes to some things in life, but I'm not ready to take one with breast cancer. I plan to stay on treatment forever, if necessary and view it as a chronic illness until such time as there is a proven cure or a sure fire way to determine that I am cured (or I have progression or pass away!). Not thrilled by my stiff joints and aching bones, but I function very normally most of the time and I'm ok with that.

So happy for you, Tina!

Lauriesh: I seldom see any Her2+ postings. I have recently been diagnosed with MBC and am Her2+. I start chemo next week. You give me hope that I might have have a mostly normal life for a bit.