My cancer is back. I’m scared

Hopeful,

With just a couple of sites, I'd ask your MO if you would possibly be considered oligometastatic? At least 25% of those cases can be cured with radiation and followup treatment like Ibrance-Femara, according to an MDAnderson report. Do not know how brain mets could affect that, but its rather rare for brain mets to show up as the main site for ER-positive cancer-they are more commonly seen with HER2-positive cancers, so that is something to ask about as well. Are they for sure brain mets?

Although this is as big of a shock as it gets, there is absolutely good reason for hope, existing treatments can carry you for many years with minimal side effects, and by then the entire field will be transformed with new immunotherapies and other treatments currently in clinical trials. Impossible as it feels right now, try to hold on to that faith in the future and enjoy life and your kids, because the time will fly by as always...

Hopeful2, I am so sorry that you are dealing with this recurrence. If you read the Stage IV threads, many of the women have been living a long time with metastatic breast cancer. You can do this...you have to do this for your kids.

Mae, I can relate to Hopeful. Her treatment plan threw everything at this beast even when her nodes were clear. There is such a sense of relief when the lymph nodes are clear. With a BMX and clear nodes, it’s easy to believe the cancer is gone. I believe that once us early stagers have completed treatment (except for AI’s) then we are seen as low maintenance patients. I have never been told I was cured but I do get the impression that I am considered such a low risk of recurrence.

I don’t care what the stats of my cancer tell me, I had cancer in my body and as much as I would like to blindly believe I am cured I know there is likely a cancer cell floating around just waiting to “wake up”.

It’s my family and friends that believe I am cured. They don’t want to consider the possibility MBC.

Thoughts and prayers for all of you living with this beast.💜🙏💜🙏

Bella2013

OP, I'm sorry you find yourself back again. It really really sucks & it's not because you didn't do something. You did all the things & still it's here because cancer is a wiley monster.

I echo Mae's comment. Seems many patients are not told that ~30% of people diagnosed with early stage breast ca progress and eventually die from the disease. Each individual's risk of recurrence is different but that overall stat was always on my mind. Early detection and full treatment does not guarantee a happily ever after & 1 in 3 is an awful lot

Hopefull - hang in there. The early days suck the most. You have a good screen name - cling to that hope! & treatments, even for stage 4, are changing, it seems to me, quite quickly. I figure we just need to keep kicking that can down the road and hoping for effective treatments.

Sending you love along with all these other lovely sisters, Hopfull2. I’m hoping you get to NED again with the new treatments that are available now. (((Hugs))

It's great that you found this forum although I'm sorry for the circumstances that brought you here. The first weeks after MBC diagnosis can be exceptionally challenging, but after a while things WILL settle down!

If it's possible, please get a biopsy to see whether the cancer in your bones is still hormone receptor positive (and, I assume, HER2 negative). Sometimes the pathology of the recurrence is different from that of the original primary tumor, which in turn could affect the type of treatment you receive.

If you would like more information about treatments, dealing with side effects, and more, you're welcome to receive a complimentary .pdf of my book, "The Insider's Guide to Metastatic Breast Cancer" which is also available on Amazon. If interested, please visit: https://www.insidersguidembc.com/about

And as others have mentioned, if the cancer is confined to the bones, your prognosis is better than if it had been in your organs. Many people do well for years, and even a decade or more! And with the introduction of new therapies, the outlook is much better than it had been years ago!

Kind wishes.

It’s ok to be terrified to scream, to cry to think why me? There will be people who act like it was your fault for not catching it sooner, they are wrong. There will be people who get on board and cheerlead you through every stage and support whatever action you take. They are your true blues!!

I had stage 3 TNBC and was told it wouldn’t reoccur and there was no risk having a lumpectomy rather than a mastectomy. I didn’t look for trails as I trusted my medical team to do all this and refused to google anything.

A few years later after spending at least a year asking repeatedly about my scar tissue and constantly feeling it as it felt odd but being told it’s just what scars do (I had no idea I e never had a lumpectomy before) I have mets to the skin in that are which I kept saying the skin didn’t look right got told to put cream on it. I then had my left lymph node come up which led to a biopsy and mets being discovered.

My best advice research all the trials and treatments out there look at forums see how others are doing etc. Always be ahead have a few treatment options lined up for just in case and make sure every time you discover another option it’s documented and you take a note.

I’ve been researching long term survivors and taking control or your treatment seems to be a big step forward.

Keep on throwing everything you’ve got at this and focus on the outcome you want 😊

Hoping the radiation helps your symptoms. I hate that you have to deal with this!