Unfortunately it appears I am back.

Thank you mods. I had that run, and it came back with a Pik3 mutation. Can somebody tell me if that’s bad? I’m pretty overwhelmed.

Kbl actually they told me they wouldn’t do anything with the guardant results except to know what they’d do next after the Fas/Verz failed. Does that sound right? They didn’t even want to run the Guardant. It was done elsewhere.

New MO who said the PET was underestimating my Mets was right. Sadly. Had bone scan to see if it was better way to follow my ILC and it was, apparently. I can see results on my portal and it basically says it’s everywhere. Skull, ribs, vert, sacrum, femur joint area. I’m devastated and so scared. And I’m worried it’s moving fast. Three weeks ago nothing hurt. At all. Now I hurt everywhere. Does having “widespread osseous disease” mean I’m going to die soon? Like is it out of control?

Update, though not a happy one…..

Was prescribed Faslodex and Kisqali on Tuesday, though I’ve been unable as of yet to get VA pharmacy to fill the Kisqali. It’s “going through the process.” Had more MRI yesterday, and the result on my portal says there’s hazy irregular lesions involving the spinal cord at C7, possible leptomeningeal carcinoma vs artifact. I suspect it’s not artifact as I’ve been saying for two weeks that I feel physically like I’m dying, and quick. I hope to God I’m wrong because I don’t have my daughter set up yet to be as ok as she’s going to be able to be. Can’t get in to MDA…..even the latest mri and the prognosis without treatment which indicates I might not make it until my july appointment isn’t enough to get an earlier appointment.

The thing is this……none of this needed to happen. None of it. I’m putting this out there not to complain and “poor me” or for sympathy. I’m putting it out there so that if anybody in the future is reading it, and is in the position to make a difference in treatment, particularly of women, they will know the reality and the consequences of dismissing people as “just anxious.”

Not only was my diagnosis missed in 2017, I started many months before my Oct 2019 diagnosis saying something is wrong. I specifically said something is wrong on my left side (my cancer was ultimately discovered in my left breast). A male doctor (not VA) told me as I was trying to describe all my odd symptoms, “I have other people to see, I need to examine you and move on.” He wrote it off as anxiety. The VA sent me to mental health and assumed it was anxiety related to my 9/11 PTSD diagnosis. I kept trying to tell them I wasn’t making it up. They diagnosed me with a “somatic” disorder, basically hypochondria. They even convinced me it was just my anxiety. Only it wasn’t, it was cancer. I didn’t know what it was but I knew my body and I knew something was wrong.

In about Feb of 2019, a female doctor (not VA) told me “are you anxious? Yes but I think it’s because you know something is wrong and nobody is listening.” She, unfortunately, very suddenly parted ways with the clinic before we tracked down what was wrong.

In Oct 2019, I found a lump. Myself. On the left side just as I’d been saying. I did all the treatments. Surgeries. Took my letrozole every day without ever missing a dose. After the initial treatment, I was treated/followed at a local clinic and an NCIC cancer hospital. The local clinic as it turns out was head and shoulders above the big hospital, and would have caught this had I stayed with them. The big hospital does NO routine labs for follow up, even though I was Stage 3 at diagnosis with 8/11 lymph nodes. Not even a CBC or Chem 20, much less tumor markers. They do not image either unless you come to them with symptoms. They check your scar line and your lymph nodes, basic physical and that’s it. I did tell them every visit starting a couple years ago that there were two spots on my back that felt bruised when I would lean back in a chair. They would bang on my back and ask does that hurt, then send me on my way. I know now that those spots are where T6 and T11 would be, which is where I now have the most cancer and a fracture in T6.

I moved my treatment to another NCIC center with a doctor i trusted. In July of last year I went to him about rising tumor markers (done at my local clinic) and was told don’t worry about it. He did CT for restaging, declared it clear, his nurse and I cried with relief. He showed me the actual CT images and I asked about the things that had lit up on my CT on my back and asked how do you know that isn’t cancer. He says because it’s on the edges not in the middle. Said it was arthritis. Said we’d rescan in six months but not because of anything on that CT. There was nothing of concern.

Six months later, another CT. This one showed a fracture in T6 and a shadow that might be cancer or might not. I asked how concerned are you. He said “in a less anxious patient, I’d wait and rescan in six months, but I’ll do an mri if you want.” I said I want an mri. THAT showed widespread osseous disease over my whole spine. A bone scan then showed it everywhere, skull, vert, iliac, sacrum. Now potentially leptomeningeal carcinoma. Which if true, as I understand it, means I’m likely not even going to have time to get my daughter a car she will need, to buy her the gifts I wanted to put away for future Christmases, to make the videos I wanted to leave with her, the cards, the letters. I’m likely not going to put up a tree with her this Christmas. Can’t get through the junk in storage to keep her from having to do it. Won’t see her dance again. She’s 16. Alone in the world other than me. And I could have been here longer with her and for her if somebody would have just listened. But I was “anxious.” Overreactive. Not mentally ok. Yes, I was all those things. Because I knew my body. And nobody would believe me.

@malleemiss251 @katg @kbl I don’t have the mental energy to respond individually but wanted to thank you all for the encouragement and love. Yes I was told that they don’t diagnose lepto without a spinal tap, but not to give up yet. They first want to repeat the MRI, and do brain too. My MO tells me she will be shocked if either show anything, as it’s generally a more late stage diagnosis in highly ER+ BC. My RO seems skeptical too. They are hopeful it’s artifact.

I appreciated their encouragement but honestly it doesn’t make me feel much more hopeful as I’ve been nothing but an “over-achiever” in this whole journey, surprising everybody with the size of my initial tumor, the nodal spread, now the wide spread nature of the bone involvement coming out of almost nowhere. I am having constant headaches and head pressure too. I’m trying not to give up, I can’t believe I’m here in this place. I never would have dreamed it.

Edited.

I have been waiting to post this update until I could see the neuro-oncologist. I had a repeat spine MRI on the hazy spot that was concerning for Lepto. I have been irrationally afraid to say anything at all for fear that the other shoe would drop, and I’d find out that the imaging yet again was wrong, or misread (some imaging PTSD I think). I’m still afraid to say the words or to believe it. But I really feel I need to update all of you who have been so supportive, as well as anybody looking for hope on something similar in the future.

I have been told by MO, RO and finally neuro, that the spot of concern resolved on repeat mri. It was artifact. I saw the imaging myself today, side by side, and the neuro assures me it was nothing. And that there’s no brain involvement either.

My immediate issue now is potential cord compression which we are working through. I am still scared, and still overwhelmed and worried about whether this treatment will work or not, but I feel really confident in the team of doctors I’m working with, who have without exception been wonderful, and who talk to me like an intelligent woman with a brain. So things are looking up a bit. Thank you again for all your support.

I’m going to move over into the forums more specific to my individual treatment issues, but wanted first to update here.

I’m in Cycle 3 of Kisqali/Faslodex. Sometimes I think it’s working and sometimes I feel it’s not. My tumor markers are jumping around, so MO says there’s “no trend” yet. 15-3 is still high, CEA still normal. After the first cycle, things that were hurting before had stopped hurting, and MO was pleased. Now in the past three weeks I’ve developed pain in a place I’ve never had pain before (over a muscle and a rib so who knows which it is).

Will have my next scans in a couple weeks so I guess we will know something then, although I asked my MO if the bone scan doesn’t show well any lytic lesions (as stated on report from last scan) and there are likely a lot more than we could see, won’t it look on next bone scan like i have more lesions since presumably some will be going sclerotic as the treatment works? MO says yes, often, in the first scans the radiologist will say there are new lesions on bone when in fact, it’s lesions that were always there but didn’t light up before. A little nerve wracking not knowing. Especially since I know imaging isn’t very reliable on me. I do know that a very large lesion on my spine that has been MRI’d in April before treatment and again in July showed no change at all, surprising the neuro surgeon who evaluated it. So maybe that’s a good thing?

As for the potential spinal compression, neuro surgeon decided radiation was best manner of treatment as its causing no sx and doesn’t appear to be compressing cord…just touching it. I’m halfway through radiation on that. Tolerating all the treatments pretty well. Except Didn’t have any pain at all in my back before radiation. Now I do. Go figure. RO says there’s sometimes flare pain as the cells die, and it isn’t permanent. I can handle that.