Diagnosed today as Stage IV

Anonymous

I posted in the Just Diagnosed thread three weeks ago when this crazy ride took off and here we are in Stage IV land, unfortunately. I spoke to the doctor today and while they are waiting for the bone scan and node biopsy results to come back, there was a spot on the pelvis in the CT scan that was concerning. I suppose perhaps that aligns with the facet joint pain I've been having since June, but that I can trace back to a specific event and it has been improving weekly (once I got a decent chiropractor). But that is the only place the mets have shown up, I guess there is a slim chance its something else (the way my luck has gone through this its unlikely).

Going into the appointment I think I knew, somehow, they were going to say Stage IV. Felt it in my bones so to speak. I feel like such a chump for not getting the nipple issue checked out earlier, for not taking the time for me when I was getting pounded at work last spring, for the pain that leaving behind my loved ones is going to cause. I am 42 and will likely pass before my parents.

This site has been a great source of comfort and information for the last few weeks, and I wouldn't have been nearly as informed and calm taking this diagnosis had I not stuck to this site (and the UK option) only. I don't want to know the survival stats for this stage, I cannot change where I am, but I can make the most of however much time I have left.

I will take this weekend to come to terms and then move forward from Monday. The plan is still the same with chemo for five months, then surgery. I meet the oncologist next week and I go to a different, cancer intensive (and MUCH closer) hospital for my chemo. And then I think we start to plan for how to go home to the US next fall, so I can be near my family and what is most familiar.

Strangely while this is sad I almost feel relief - there is nothing to worry about but myself now. All that crap about careers and politics and reaching adult milestones - doesn't matter anymore. What matters is getting better and doing what is best for me and my other half. Its very freeing.

DivineMrsM

Sondra, I’ll tell you what my onc told me almost nine years ago when I was diagnosed with bone mets from the get-go. “With treatment, you could have years.” It will be nine years in December since I found the lump. Take it a day at a time. It is a game-changer, no doubt, and I’m sorry you’re dealing with this at age 42. I wish you all the best, and there’s great support on this forum.

screech

I echo DivineMrsM....it's not easy to do it, but just take one day at a time. NO ONE knows exactly how this all plays out, how we respond, etc. I was diagnosed a stage 4 at age 50 (March 2014). Now here I am at 55 and still enjoying every day! Who knows what the future brings to any of us. I am currently NED (knock wood!) and have been since Nov 2014. Who knows what the future brings, but I just feel that every day brings us closer to the miracle drug that becomes our insulin.

Moderators

Sondra,

We're so very sorry to hear this news, but we're all here for you. A stage IV diagnosis can be devastating and overwhelming for sure, but as the members above have stated, there are treatments that can help for years and even get you to NED. All hope is not lost -- and you'll have the support you need here as you navigate this unfortunate journey. Seeing this diagnosis as freeing is certainly a positive spin -- try to keep that positivity!

Sending you lots of love,

--The Mods

illimae

Sonda, I'm sorry for the news but I get it . I was diagnosed at 41. I continued working for about a year, then decided I was done. Now, I spend most of my time doing whatever I want! Day to day, stage IV is less stressful than my former job and I love sleeping in 🙂

Nkb

Sondra- as others has already said- no ones knows how long we will be here on earth or what Medswill work - so try not to waste too much time worrying about it. I also took a while to get the “Don’t wait” philosophy to do what I want, go where I want etc. Sleep in, buy the toy. I spent too much time wondering if I would be on earth long enough to justify the purchase. I was told 2 years - almost 8 years ago. my only other advice is to consider who you want to know about this cancer. I found that beyond a small core of people - I didn’t want to reveal this about myself. People have strange reactions that can be unsettling. As a friend told me- tell enough of the right people to get the support you need.

Take care of yourself!

Missmom79

Sandra divine is right. My grandmother had inflammatory breast cancer back in 05 and it had worse to her bone and her oncologist said ste had years left. Prayers

Cure-ious

Sondra, Our family, friends and we ourselves put a lot of expectations on us, so I know what you mean about how freeing it is to re-boot life with a much simpler plan. When you get to a place where you are responding to drugs and feel "safe", you will have time to investigate and plan for the next phase of your amazing life!! And who knows, another big breakthrough could be around the corner

DATNY

Bone scan is the gold standard for bone mets. CT scan can pickup all kinds of things, including false positive. The fact that you have an injury at the site it is also important to keep in mind. In a nutshell, there is not confirmation you are stage iv until the bone scan proves otherwise.

I remember the time of my diagnosis, 2 years ago. It was hard, in my case the cancer made me sick and I had a plethora of symptoms (all gone after treatment). In fact, I started to worry about cancer 5 years prior, and possible metastasis 16 months before diagnosis, which was at a routine mammogram. I remember telling my husband when the docs won't find any reasons for my symptoms :"I am afraid this is a cancer, and they will find it too late." (of course, at the time he looked at me like I was crazy). When it was found (4 tumors and a lymph node), I was sure it was all over me. This may sound funny, but at that time, I could not even believe that it was breast cancer. I thought it was other type of cancer that metastasized to breast. (My most bothersome symptoms were abdominal, all wiped out by chemo).

Unfortunately, even if you are not stage iv now, there is now guarantee. If you search on this site, you'll find ladies with stage 0 that become stage 4 after two three years; and stage 4 ladies that are ned for many years (perhaps cured). You'll have to learn to live with this uncertainty. The good part is that in this process you learn to prioritize and sort out crap much faster.

Anonymous

Thanks for all the lovely messages ladies - I had a big ol' ugly cry (alright, it was bawling) last night with my partner, took some Advil PM and then woke up feeling a bit more calm. Nothing is for certain and confirmed until the bone scan and ultrasound on that pelvic spot come back, but the doctor was very careful in her words about they can treat but not cure. She did also note the possibility of the CT being a false positive and they needed to confirm with the bone scan and ultrasound, but otherwise the plan remained the same. Sure, its a slim chance, but nothing has broken my way yet, so Id rather assume the worse and be surprised than go through this emotional stuff again when its confirmed.

Can I ask - they had the discussion with me again about fertility, IVF, and egg freezing options - is there a reason why they would do this given my age and diagnosis? I mean maybe they are required by protocol here on the NHS in the UK, but I cannot imagine going through and knowing this diagnosis to have a child at 44. But that is me, perhaps for others it is important irregardless.

I will have to fill in my parents tomorrow about the final diagnosis but beyond that I will just tell a few other people that its cancer and needs to be treated. They don't need to know the nitty gritty details about the other half of that sentence.

Feeling really ready to get this going - let's hit it hard with everything possible. I utterly despise my job, but it also pays well, doesn't have much requirement for output and I can work from home, so I will be able to spin this out a good 9 months at full pay, 6 of those on sick leave. I intend to make the most of that time to get me ready for the next stage in life whatever and however long it is.

DATNY

You'll go through ups and downs. Some days you'll feel very upbeat, some day you'll be sure it's the end of it. Most of us do, you'll see this over and over if you search this site.

No matter what happens, the doc cannot tell you the future, nor anyone else. Even if it is stage 4, you may very well be cured, some people here are, or at least they are ned for many years.

Also, for me it was tremendously helpful to keep working, it kept me sane. The social interction, the sense of normality, the preoccupation with things other than cancer, it all helped, although cancer and death was always in my mind (not as much now, after two years). I work in academia, and I taught during chemo and continued to advise my graduate students, but the level of effort had to be turned down. I did take time off after the bilateral mastectomy, three weeks. That semester I did not teach, but I continued to interact with my students after that and during radiation. I have a role example too, one of my friends who is metastatic and lives a pretty normal, very busy life between dr appointments and treatments.

I was also 44 at diagnosis, but I don't recall anyone mentioning nor even hinting about fertility. I do have kids, maybe that's why.

nowaldron

Hi Sondra,

I am truly sorry to hear about your recent diagnosis. I was diagnosed 3.5 years ago with extensive bone mets and two spots on my liver. My onc told me (like many others) that Stage IV is treated as a chronic illness now - she equated it to diabetes. I have not had any recurrence and feel terrific. I am a college professor and I still work full time and have a quiet, but happy social life.

I had chemo (Taxol) for six months, and have been on Herception/Perjeta for the entire time. I have few side effects and these drugs are very, very effective.

I know it is terrifying, but please read about our stories. You will see that there are many long term warriors here who enjoy a wonderful life. I know this is not a club that you wish to join, but know that all these wonderful women are here to support and help you.

Sending good vibes to you!

Nancy-Rose