Kicked out of BC Clinic because I hit 10 years

Can you contact your old MO and ask him/her to refer you to a new MO?

Meggy:

That sounds very strange and that they just cancelled your apoointment like that might constitute patient abandonment and violate patient abandonment laws. I would take this up with the center's office manager or director.

It actually doesn't seem strange at all. I'm surprised they kept her as long as they did. According to her stats, she's triple negative. You are considered "cured" after five years disease free. Your recurrence rate basically drops to exactly the same as any other woman your age who has not had breast cancer. So any cancer would be considered a new primary.

I agree with Alice. You should go to your primary care doctor for tests. It's much more likely to be a thyroid issue than your triple negative cancer coming back. You really should consider yourself cured of the original cancer.

Best wishes.

Trish

Meggy there may be a differentiation between people who get a strong response to chemo, and those who don't. Also what stage you are when treated. Among people w pCR, very few (almost zero) have recurrences after 5 years. Pretty much the same risk as general population. My MO told me he'd never seen a recurrence of TNBC beyond 3 years out.

I sympathize w not wanting to leave your med facility and hope you can work up the chain of command till you find someone sympathetic to keeping you there...

Dear Members,

We have been following this discussion and we have asked some of our professional advisors to offer guidance around some of the facts mentioned. Namely we want to fact check the following:

1. Whether or not a TNBC recurrence is automatically stage IV
2. Whether any new TNBC tumor (recurrence or not) would be considered a new primary
3. How is breast cancer recurrence risk for TNBC after 5 years and after 10 years compared to average woman's risk

The Mods

I am confused. I am not triple negative, but never heard about any recurrences ever automatically becoming Stage IV. Unless I am missing something, and I often do as of late, I am equally shocked that the mods are even looking into this. I have mixed feelings about being kicked out of cancer care. When I was, twice, only show my BC stats, I have never been so relieved! I hate going there. Canada is diligent about getting patients out asap. But I also understand the feeling of vulnerability, especially if you are not feeling well and strong. My RO assured me that any time I wanted to contact him, I could. He stated that very few patients want to come back unless they absolutely have to. But I did like that connection. Unless he leaves or retires. But I could get referred back by my primary care physician anytime. Perhaps in the States it is not so easy or perhaps insurance is affected. But after 10 years, although we are never cured, you have done so well! They may be suggesting that your odds now of recurring as so low, that this level of monitoring is no longer necessary. But I hope you can find a level of care that is caring and reassuring. And has the expertise that is needed. Wish we could just go to the zoo instead and release that monkey that we all have on our back. Take care

TB90-- the difference with TNBC is it is one of the cancers that CAN be cured... and it looks like OP may be one of the cured ones. Yet that can be really frightening to count on, so I can see why it's scary not to be on the followup plan.

Well the stats on TNBC say it can be cured. With TNBC patents who get a pCR, 90% will not recur. Ever. 90% of pCR achievers will be cured of their cancer. That isn't perfect, because 10% will have a recurrence, but those will happen early in time. Unlike HR+ cancers, which can hibernate lengthy periods and then reemerge 20 years later.

Dear Members,

This is a follow up to our previous post on April 13.

We have checked in with some of our experts and are offering information that we hope might help with this important and complex discussion. It is important to state at the outset that there are no real absolutes. Every situation is different and the best source of information about one's cancer and cancer treatment is always with one's medical care team.

Whether or not someone is released from a medical oncology practice after ten consecutive years of being disease-free, regardless of initial diagnosis, is likely dependent on one's health insurance, the particular cancer treatment center, and one's individual disease characteristics. In general we do hear that many people end up returning to the care of their general practitioner or internist after a number of years of being cancer free.

In looking at the study provided in the topic: (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5765226/), some TNBC recurrences were distant, some were local, and some patients developed a "second primary cancer" but we don't have the characteristics of those tumors in the manuscript - so again the answer would be highly individualized, but "automatically stage IV" appears incorrect.

Regarding the TNBC late recurrence risk, the study authors concluded:

"In clinical practice, we generally reassure our [TNBC] patients and their families that the risk of breast cancer recurrence is minimal once they have survived for 5 years without disease. Although this is generally true, we found that 5% of these survivors will have a breast cancer recurrence within the subsequent 10 years. … Overall, this study highlights that although TNBC patients have a lower late event rate than other breast cancer patients, there is still a small subset of patients who experience late recurrence."

However, comparing this to an average woman's risk wouldn't really work, since we'd be talking about the average woman's risk for a primary breast cancer (12% lifetime if you live beyond age 80) rather than a recurrence – it's not apples to apples, so it would probably be confusing.

The Mods

Dear Meggy: I am so sorry you experienced this. I once had a thread get away on me and I had to ask the mods to stop it. I was devastated. So many posters lose sight of the original post. It becomes their issues and their agenda. I do not want to diminish your concerns, but women new to this experience just struggle to cope and are not in the best place to put your needs first. We are all in a different place and I have expressed this on other threads, but we are not all able to be supportive yet. Or able to think outside of our own experiences. Self help forums are far from perfect, but like you, I have experienced amazing support and sharing of knowledge. Please do not give up on us. Our intentions are much greater than our personal limitations due to this aweful disease. Would love to be here for you or to stop this thread. Your choice but know we care, even when it dies not always seem that way. Any sorry if I am speaking on herald of others. I really have no right

Hi Meggy - was hard to decide if I should let this thread remain inactive and pm you or if I should reawaken it. I decided that I would post.

If you can go to a regular doctor and get blood work done that would be a first step. I have also been tired for months. I told my husband that I had not felt so tired since I was on chemo. It is fatigue. Don't know what causing it but I am pretty sure it is not cancer as I just recently (6 months ago) had a CT scan which was all clear.

My RO discharged me at 5 years (which was 2 years ago) but said if I needed him I could call. Well I needed him last October because my asthma flared and I thought I had lung Mets. I called him on a Wednesday, he had me in on a Friday, bloodwork by Tuesday and CT scan within two weeks. For Canada (specifically Winnipeg) that is incredible timing. He reacted pretty quick and did not ever tell me that I was “cured" after 5 years. He did say my risk was reduced. I guess what I am saying is your diagnosis line and symptoms play a big part in how worried you/I get and how serious they take you. I know why you are worried! We have a similar diagnosis.

You have been through so much over the years. I do not come back to the boards often but when I do I always look to see how you are doing. When I was first diagnosed You gave me so much hope. You made me feel like I could take some control over a totally uncontrollable situation. I talked about you so much to my husband, my friends, it was like I knew you personally. I even private messaged you once over the years. Your posts got me through a very tough time.

The whole cured or not cured thing is hogwash. One woman said earlier (years ago) in a different thread that the stats are 100% you will recur or 0%. I thought that was funny/odd at the time but I get it now. You do or you don't.