Years between First DIagnosis and recurrence.

[Kykakeke]

Has anyone heard that the longer you are a survivor of your first diagnosis-when (or if) it comes back it is not as severe. And not aggressive as if it came back in a year or two? Mine came back in the bones after 16 years. Doing Ok but always have the worry that the treatments will stop working. You all know the feeling. Will it last???

[Barbteeth]

Hi there

I’m in a similar situation to you

Mine came back after 24 years and is widespread in my bones

I don’t know that it makes any difference how long since initial cancer.. mine was small tumour with no lymph involvement so I thought I was going to be ok

I’m really struggling mentally with this..mainly because of the pain and the worry about what the future will be like

I was so fit and active until my diagnosis..had a fractured vertebrae and an X-ray showed the dreaded tumours

So I haven’t answered your question..sorry but I don’t think anyone really knows with this hideous disease...it’s early days for me and I take letrazole Ibrance and xgeva

All the best to you

Barb xx

[NPmary]

The women who are premenopausal with Mets definitely (well known scientific evidence) have more aggressive cancers. I feel so badly for these younger women who often have babies and young children.

Anecdotally what l know of others personally , know of myself, and many on social media post-menopausal women and women who get Mets many years after initial diagnosis often seem to have less aggressive cancers. The new meds which prolong progression free survival l do think contribute to this. Women diagnosed with Mets just to the bones also do much better than others, as do women with few isolated , treatable Mets (not to vital organs, check out oligometastasis).

That said, we All do have to cope with rhe knowledge that there is no cure, and that although 'everyone dies' this cancer will cause our death if some other illness or accident doesn't.

Finding Facebook groups like peer to peer metavivor; eol/sol metastatic breast cancer; art from darkness has been a help to me personally. I like this group and a group on the net called Belong as well. Last night l went to a support group meeting for people with stage IV metastatic breast cancer. It was good for me, there were 3 women there all doing well (better than me it seemed, love had this since 7/17, they have had it for 5 years, 3 years and 6 years. So it seems many are living longer, some much longer than the terrible statistics you read.

Blessings and Happy Thanksgiving to all of you and your families.

Mary

[PJBinMI]

I have bone mets only, and while I never was diagnosed with a bc that was not yet metastatic, I have been living with bone mets for almost 15 years and am only on third line treatment. One of my ways of coping has been to learn all I can about bc and mbc and I have attended a number of conferences where oncologists are the main presenters, including the San Antonio BC Symposium, the largest bc conference for oncologists (and others) in the US. I also attended the National BC Coalition's patient advocate training and do my best to keep up with the latest info about bc and mbc. And yes, it is often said that the longer between early diagnosis and development of mets, the better in terms of the aggressiveness of the cancer cells. Other things that are likely to point to a better prognosis include having bone mets only, being post menopausal, having E receptor + cancer cells, and having a good response to first treatment. All that being said, each of us has a unique experience with this lousy rotten cancer! None of us has the exact same mix of cancer cells as somebody else. And even two people with similar cancer and personal profiles can have vastly different experiences. One thing that has helped me is to ask my onc what's next, when this med fails what will we turn to next. It may be that by the time the current med fails, there will be another drug approved that's even a better choice, but it helps me not to focus on all the "what ifs" that come with this cancer. And I really surprised myself when I had my first progression. I knew it would eventually happen, I trusted my onc, and I had no pain. I got almost five years from Femara (along with Zometa for my bones) and then amazingly got over 9 years from Faslodex. Now I'm on Aromasin, since early this year. My long time onc retired this year, very suddenly and I have been much more unsettled by that than by any progression! She's been my security blanket, a fierce advocate for her patients and on the same wave length I am in terms of communicating with me. Sigh. I don't know how long you have been living with mbc, but for me, the first 12-18 months were the most difficult emotionally.