Breast cancer diagnosis

Dear fellow forum members..

I have inflammatory breast cancer.. the most invasive and aggressive type of breast cancer out there..

The nightmare with this specific type is how late it gets caught and how incredibly fast it spreads.. It progressed so quickly that it has already reached my pelvic bones, and we only just finished the diagnosis and the staging process before starting chemo..

Now, because they realized in the meantime that I am Stage IV, they are pulling me off the aggressive chemotherapy I was originally scheduled for and switching me to chemoimmunotherapy instead. In my opinion, that’s just palliative care disguised as treatment.

Do you see? I didn't even get a chance to start the actual chemo, let alone undergo surgery, and I am already at Stage IV..
The damn thing hid itself so well that even an ultrasound missed it. And I couldn't even get an MRI done because of some severe abdominal pain (it's a long story). So, while under the supervision of an ultrasound technician and a surgeon, my tumor spread.. all because those biopsies and punctures take forever, and this thing is so invasive that it literally expands day by day! Don't tell me the doctors say it isn't happening.. I can feel it on my own skin!

The entire point of me opening this thread is to urge every woman dealing with mastitis to make some noise. Regardless of whether your doctors insist on further testing (MRIs, mammograms, especially BIOPSIES), demand them immediately! If they won't listen, GO ON YOUR OWN. Pay for it if you have to—I did, and even then, it wasn't enough because it was too late. This thing hides incredibly well; the surgeon didn't react fast enough, the biopsy process dragged on, and now... here I am, in an incurable stage.. 😢

I realize this topic falls under the general breast cancer category, but given how invasive and lethal this specific type is, I believe it warrants its own dedicated thread.. specifically as a warning..

So, anyone experiencing mastitis (breast inflammation)—start making a fuss RIGHT NOW! It might not be cancer, but.. what if it is??
As soon as the breast turns red, get on antibiotics IMMEDIATELY, and don't let it drag on for more than 14 days. If it doesn't clear up, demand a puncture urgently. Go private if you have to! Just get those results back as soon as possible! If the findings are unclear, rush to get an MRI and a biopsy—private or otherwise—just go where you can get seen faster and get it over with! In my experience, we are talking about days here, not weeks..

That's all.. please keep me in your thoughts and pray that I can live as long as possible with this monster inside me, and with as little pain as I can manage..... 😢

Thank you all in advance..

And I truly hope that by starting this thread and posting this, I might save at least one person's life..

Brenda Johnson68, I am sending every bit of good luck in the world your way... but listen, do not you dare give up, you have to fight this...
Don't let anyone, and I mean anyone, tell you that the road has ended. You've got to fight. Demand that aggressive treatment they promised you, swap out doctors if you have to, knock on every single door you can find, and throw everything you've got at this. Just don't quit!

Dear Kate Morgan66, that is precisely my plan. I am heading out to get two more opinions, and honestly, I might even seek out a fourth.
The thing is, I’ve already had two specialists tell me upfront that when dealing with metastases, we aren't looking at aggressive chemotherapy, but rather immunotherapy. There is actually a targeted smart drug designed specifically for this type of cancer because of how heavily it relies on hormones. So, it isn't as if there are no options at all, but... I don't quite wrap my head around it. Even while I was reading up on the protocols, it seems that this is just how it's done.
However, until a wider consensus of experts—both from private practices and Medicare—all say the exact same thing and provide a logical explanation, I am certainly not giving up the fight. Of course not.
It’s just that if every medical resource says the same thing, then I suppose it must be the truth. But still, I demand an explanation!

I honestly don't even know what to say. 😢
I am so incredibly sorry this turned out this way.
My heart goes out to you, and to everyone else facing similar situations where things spiral because the healthcare system is just too slow and lacks any real sense of urgency. It’s one of the darkest parts of how medical care works here in America...

Just keep fighting as hard as you can. 🙂

Brenda Johnson68, shoot an email to this oncologist. Isadora Duncan, that famous American author, went to see her with 77 metastases and now they're completely gone. This doctor is the real deal.
I'm rooting for you to get through this treatment successfully.

My dear friends.

I was presented with an option for a more aggressive therapy involving a full attack combined with surgery, though there is the inherent risk that this choice might complicate my future treatment options. I would have agreed to it in a heartbeat, but I simply don't have the luxury of waiting. When the doctor heard that I already had chemo scheduled to start the very next day, she insisted that I need to begin something immediately because I am HER2-positive; she emphasized that we need to get something into my system URGENTLY. The dilemma is when they at Mayo Clinic could actually finalize the chemo plan. I’d likely be stuck waiting ten days, and even then, I wonder if I’d even be granted access since it falls outside the standard protocol. Even though it seems reasonable, her advice was to stick with what is currently set and see how things unfold... but from what I gathered, there is no turning back: once you commit to this path, you can't retreat to the aggressive AC therapy. 😢

And so, here we are. Because of this damn race against the clock, I ended up being placed on maintenance therapy instead. From what I've been reading, none of the medical journals are forecasting the "disappearance" of the tumor; they are talking about maintenance... as long as it works, we shall see how I react. Most experts are skeptical about the primary mass shrinking enough for surgery, while a few are quite optimistic, believing that even with this specific therapy, the tumor could potentially vanish, making surgery an option. That would be wonderful... because given how rapidly it spreads, it should theoretically respond exceptionally well to this treatment. Plus, I only have one small target area rather than metastases everywhere, so I might just defy the statistics regarding the predicted two to four-year survival rate. Some even suggest I could see my full natural lifespan... oh, God. But that was just one doctor's opinion, and the others aren't entirely convinced, even if they haven't ruled it out.

Anyway... please keep your fingers crossed for me. I hope I tolerate this therapy well and can stay on it as long as possible, so I don't end up like those grim statistics due to toxicity or a lack of response from the tumor. Please pray that this thing shrinks and that I can at least get that mass removed so I don't have to stare at that damn thing every single f....ing day while I'm showering... that is my goal and my hope. It sounds thin, perhaps, but... it is hope.

I’m really crossing my fingers that the treatment hits the mark and you can finally kick this thing to the curb... just give it everything you've got, okay?
And honestly, I totally get where you're coming from. I spent three agonizing weeks waiting between my diagnosis and surgery, and man, the mental toll was brutal—just knowing that "thing" was living inside me every single day... I was practically counting down the minutes until they could just get in there and cut it out.

Brenda Johnson68, we're thinking of you and keeping our fingers crossed!🙂

Ugh, I am seriously so sorry you’re going through this.

I have a few questions, though...

How old are you?
And like, when did all of this actually start? How long has it been going on, and what kind of tests did they run on you?

Thank you all for the support, my dear ladies...

I am just praying so hard that he responds to the therapy and that they can finally get rid of him... I simply cannot bear looking at that lump anymore...

Susan Adams66, I’ve been following your journey here and there; I saw some of your posts regarding your stomach issues and those major surgeries, and it made me realize that I might be facing the exact same path. (I've been dealing with chronic lower abdominal pain for a year and a half now, both before and after my laparoscopic surgery for fibroids)... I started worrying that maybe I have nerve damage and that I'll be stuck on a endless hunt for surgeons, searching and searching until someone actually finds out what's wrong... but oh, it isn't quite that simple for me... (and what is it? 😢 )

In my case, it was clearly a combination of chronic pelvic inflammation, fibroids (perhaps necrosis?), and NEOPLASTIC SYNDROME... which basically means you're in pain somewhere, nobody understands why or what it is, doctors keep digging around, and they find absolutely nothing. And then, after a short or long period, the true illness reveals itself, stepping into the light in all its glory, and suddenly those "phantom" symptoms on the other side of your body start to fade away... That is exactly how my inflammatory breast cancer made its appearance. There you have it! That's the truth of it!
As for me, for instance, my abdomen doesn't ache like it used to. That heavy feeling is gone, and I can walk normally now (which I couldn't do before), though I still can't handle any exertion whatsoever—nothing heavier than a few ounces. My husband still has to slice the bread, the meat, and everything else for me... what can I say... but at least I can walk and stand...

Susan Adams66, I am 48 years old. And I am desperately hoping that they made a mistake. That there is no target. Or if there is one, that immunotherapy will wipe it all out (it could happen, truly, but the odds aren't exactly high). However, all I can do right now is try to survive these chemo days and hold onto the thought that there is no other outcome than this thing disappearing so they can cut out that leech of a breast...😁

That's where I am. I'm staying positive because I wouldn't be able to handle these sores on my face and in my mouth any other way... I fight for every single day, and I even look forward to washing up! Hahaha!! I look at my photo with my wig on and I just admire myself... hahaha!
It's crazy, really... because... my hair was always thin anyway, so I found this amazing wig—long, real hair... thick, fine... I finally have something to look at in the mirror.. HAHAHA! It was expensive, but if it brings me joy, then to hell with it... 😉)))

Call me crazy, but I am trying to find joy in every little thing and every small opportunity I can grab hold of...😉

You’re doing so great!

I actually found myself Googling about this exact thing recently. I had a biopsy back in May and everything came back perfectly fine... But you know, maybe the real issue is just how we start dealing with aches and pains as we get older... nothing debilitating, just those little inflammatory aches here and there...

I tend to be a bit of a hypochondriac and overthink every little symptom, so thank goodness everything is okay so far, but I still catch myself wondering if they’re actually catching everything during the exams...

For your specific type, it sounds exactly like what you described—aggressive as hell...

Hang in there!!!!

I'm back..

Thank you all so much for the supportive posts..

And yes, dear.. he is aggressive as hell.. and as for these doctors.. "slow down, oh it can't move that fast, the lymph nodes hold onto things for a long time," and other such nonsense. I was reading about inflammatory carcinoma, and they really ought to be aware of that, yet somehow I end up knowing more than they do.. God, who is actually treating us? They are totally indolent.. just sort of careless..

Anyway, I have new results: the bone scan says they shouldn't classify those degenerative changes they see as secondary involvement.. In other words, they aren't calling the bone changes metastases, however, they haven't looked at the PET/CT findings, where it explicitly states there is pathological FDG glucose uptake of about 5.2 units—which is considered high (the cancer itself is 6.5 units!)—so the radiology department is convinced this is secondary. Therefore, that bone scan interpretation might not even be correct.

So here I am again: I've already sent the results to one doctor and we have a phone appointment tomorrow to see if they messed up the PET (I strongly suspect they did, logically speaking), or if this crew at the bone scan decided to be optimistic and positive. Or are they right?

I asked my Neanderthal doctor (the one who is supposed to be "guiding" me), and he says: "well, they don't have to see everything.." He is convinced the PET is what matters, not the bone scan.. Of course, he didn't say it clearly; everything comes out in metaphors and vagueness, and then he's done, so bye. I have my own jokers in the hole—two wonderful doctors I contact here and there, whether it's at the hospital or over the phone (one of whom is private practice), so I still manage to get (hopefully) some information..

Good grief, this American healthcare system.. 😢 (To all you kids out there, I'm screaming: run away from here to some normal country with a functional healthcare system and all the other vital components..).

There it is. Another fight. And what can I do? Well, if by some miracle they declare the targets were an error, I... I don't know what I'll do with my luck.. I'll probably just scream.. 😁

But I don't think it's an error.

I do have a "back up plan"—a sort of alternative approach. I’m going to ask my private doctor to write me a prescription for medical cannabis. It hasn't been scientifically proven to cure, but a lot of people around me have had positive experiences, and I truly have nothing to lose. My only concern is the potential interaction with my smart drugs, so I don't accidentally neutralize their effectiveness.

So. I have ideas, but the fact remains that I have targets, and I'm looking at maybe four years. If I'm lucky. Maybe longer, maybe shorter.. who knows.. And then, I honestly don't even know how to conceptualize my life right now: before, I used to think, "I'll get old.. oh boy, who will take care of me?" Then... my dog has a short life, how will I survive when he passes, and so on.. a hundred different visions of me being elderly, not having done this or that, how my husband and I will deal with living on the fourth floor without an elevator and needing to move somewhere, etc., etc., and in the end, I'll pass before the dog.. hahaha! I can't believe it.. I'm totally on some kind of trip.. which life picture am I supposed to build in my head right now..? I'm starting to feel "somewhat" lost..
For example, they say the new season of Game of Thrones won't air until 2019.. and my first thought is.. will I live to see it..? Terrible.. Sorry, ladies. I'm a bit depressed right now.. I don't think I'll write anymore while I'm feeling this way.

All my friends and family say I'm holding up great (but they have no idea about the targets; I don't have the strength to tell the people closest to me the whole truth—my mom would drop dead on the spot), so I'm dealing with this.. crazy diagnosis all by myself.. my husband, my sister, and me..

And you, my dear ones.

Oh, I bought a second wig.. not the one I told you about.. that one was just too expensive, lol! I'd rather spend the money on that medical miracle that supposedly works.. And it turns out the wig isn't quite as amazing as it seemed at first, so I don't regret it.. 😉

Anyway, I'll let you know what the doctor says about the bone scan and that alternative option, and what my next steps will be.

Let me say this one more time for the people in the back: if you think it’s mastitis, what are you waiting for? Get yourself an ultrasound immediately.

By the way, my hair started falling out like crazy today... I think I might just have to order a hairstylist to come straight to my house, haha!

I have absolutely no intention of wandering around with an inch of hair left during this winter weather... and I certainly don't want people staring at me while I get a haircut at a salon.. noooo! NO way! lol!

Ugh, what is it about female vanity? 😁

This is a completely new experience for me... it feels like I'm joining the Marines or something. I am genuinely curious to see how I'll look with a buzz cut... though I'm actually terrified, if I'm being honest... lol!

I'm a total nutcase... everything just seems so interesting to me. I am completely ridiculous. 😵

Brenda Johnson68, I’m so glad you reached out, I was honestly starting to wonder how you were doing...

Honestly, I think everything you're feeling is totally normal. It’s like a total rollercoaster, right? There were times when I genuinely wondered if I'd even live to see my oldest kid start their first day of school—which is why I completely lost it and started sobbing on that first morning, it just hit me so hard 🙂 . This whole ordeal is basically one big emotional whirlpool of highs and lows; for a while, it felt like my brain just went into some kind of survival mode or "safe mode" where I wasn't even really present in my own life... so once I finally finished treatment and those brakes finally let go, I just absolutely fell apart
.
But seriously, I think you're handling this incredibly well and your mindset is spot on 👍 .

Regarding the metastasis, has anyone mentioned whether there's an option to radiate that away?
I mean, I'm not entirely sure how they handle bone mets
?

Mete on the bone respond quite effectively to radiation therapy, but around here, people rarely bother with it until the pain becomes absolutely unbearable and starts causing real issues. :/
You might also want to consider medical cannabis; specifically, the kind your doctor can officially prescribe. For more detailed information, it would probably be best to look through the dedicated section on cannabis within the alternatives PDF guide.

Here is the update:

I called the private specialist, and she told me exactly what I was already suspecting: that the PET scan is the relevant piece of evidence here, not the scintigraphy. She even offered to have their radiologist take a look at the PET CD for free. 🎉

That being said, since my PET scan was performed by an incredible doctor at a top-tier clinic using even better equipment, I don't think there’s actually been an error. Honestly, I doubt there was one, but whatever. Let's just wrap this chapter up. Let's put a period on and and stop questioning the findings. Or we'll debunk them, if God wills it... though I don't really doubt anything, per se, but still... a second opinion is a second opinion.
So, I'm heading back there tomorrow at noon so they (those other people) can clarify the PET results for me one more time.

Oh, and here is something mind-boggling: I asked her if we should push for the removal of the primary breast tumor. She claims there is no medical justification for doing that right now, given that the cancer is already systemic and in my bloodstream, so...
But I find myself wondering: if the main tumor is still right there, doesn't that mean it could continue to generate new metastases as it stands? Wouldn't it be better to just get rid of it??
Her response again: there isn't medical proof that it's a priority at this stage, but if I want it done for my own peace of mind, then we can remove it.
Wait a minute: I shouldn't be undergoing surgery based on some "feeling," but rather for a legitimate medical reason. And she is telling me there is no medical evidence that this procedure matters now that the target is already in the blood...

My oncologist used a similar metaphor—calling it "Neanderthal" logic, essentially: you're worrying about a tiny flicker of a flame while a massive forest fire is raging down below... sure, we can easily operate on the breast, but the real problem is down there...

...so, to them, the metastasis is clearly a much bigger issue than the initial tumor. It makes no sense to me... why wouldn't the primary tumor keep generating new metastases?!?
Now, my doctor (and I get the feeling she actually supports the removal and is, sort of, "under the table" agreeing with my theory about what should be done)...
And so... my plan remains unchanged: shrink the tumors and remove the breast along with the associated lymph nodes. That's it.

But damn it. Where the hell is the target? If it were anywhere else, we could operate... but this? You just can't. 😢

@Rachel Williams/">@@Rachel Williams, you're right. My doctors mentioned that the bone needs radiation... but obviously not yet. We're only just starting chemo. We have to see how the chemo works first, and then decide on the next steps. That's the consensus held by my lead doctor (waiting to see the chemo results) and my private specialist too.
They both say the same thing. What choice do I have? I have to be patient, wait, and pray to God (if I even can) that the medicine works and everything disappears... there's a chance for that... or at least that it shrinks significantly...

Keep your fingers crossed for me! 🙂 Only five more sessions until we know where we stand.

However, I don't exactly trust my lead doctor to order radiation when it becomes necessary. But I have my "wild cards"—I'll keep them updated with all the news, so they can weigh in when things change, and then I can lean on my doctor a bit if I need to.
Maybe it's just my perception, but... I wouldn't even have had this PET scan if I hadn't paid for it myself. And I can't help thinking... maybe it would have been better if I hadn't, and if I didn't know I was in an incurable phase... life would be easier to fight...

So, I basically did myself a disservice... 🤷🙈😵👎 but that's just who I am. I wouldn't have done it any other way. I would have eventually done it anyway. Because I realized they hadn't run enough tests before setting a start date for the chemo. So... clearly, all of this is... meant to be.

By the way, I went ahead and consulted my private physician about medical cannabis. Her take? She thinks I don't need it just yet—apparently, most doctors here view cannabis merely as a way to dull chemotherapy side effects or manage pain in end-of-life care, rather than treating it as an actual therapeutic medicine. However, she did mention she’ll write me a prescription if I ask for it... which is exactly what I plan to do!

Even though the whole idea of cannabis as a legitimate medicine remains somewhat vague and, frankly, unproven in many eyes, what on earth does it matter? If it isn't going to cause harm (aside from costing an absolute fortune 😲), then I am willing to try it. I even asked two different doctors whether there might be any interactions with my current regimen of smart drugs, and they both assured me it wouldn't interfere with the chemo. But honestly, how can I trust that? If they deny its medicinal properties entirely, how can they possibly claim there won't be an interaction?
Good grief... so many questions, so much ambiguity, and so much sheer ignorance... 😢

Brenda Johnson68 said:By the way, I asked my private doctor about medical cannabis. She told me I don't need it yet (doctors only view cannabis as a tool to ease chemotherapy symptoms or manage pain in the terminal phase, rather than as an actual medicine... But she said she'll write me a prescription if I ask, and when I do ask... great! That's exactly what I intend to do!)

Even if the whole idea of cannabis as a curative treatment remains somewhat undefined and, frankly, unproven—well, what the hell. If it isn't doing any harm (aside from costing an arm and a leg, or more specifically, enough to make Saint Peter weep😲), then I am willing to try it. Especially since I asked two different doctors if there could be any interactions with my specialized medications, and they claimed it wouldn't interfere with the chemo... fine, then... though, really, who can say? If they deny its medicinal properties entirely, how can they possibly claim there are no interactions?
Good grief... so many questions... so much ambiguity and, quite frankly, ignorance... 😢

Regarding cannabis, several oncologists at two different hospitals in Chicago tell my mother that she is essentially a medical phenomenon; aside from her own mindset and her use of cannabis oil, they see no reason why she is even still alive. And this comes from the very same doctors who view cannabis as perhaps just something acceptable for managing pain or nausea in the terminal stages...
My warmest advice, once again: look into the difference between RSO oil (the original cannabis oil) and the stuff you can get with a standard prescription... the prices are somewhat comparable, but the potency and effects are a completely different conversation...

My mom actually used oil all the time while she was going through chemo and even after everything settled down, too. Her private oncologist told her it was definitely a good idea to keep using it.

Everything you’re saying here just sounds so incredibly overwhelming to me, though I suppose it makes total sense that you'd want to get that tumor out of there...

Just checking in quickly... I finally bit the bullet and cut my hair, and oh my gosh! I look just like Jane Doe now. 😁 There’s still a tiny bit of hair left, but I’m honestly wondering what’s going to happen the first time I wash my head... I can’t even bring myself to say "hair"... hahaha.

My second round of chemo is tomorrow. Ladies, please keep your fingers crossed for me—I'm praying I don't have a massive allergic reaction, that my blood counts stay strong enough for the treatment, and that my heart doesn't act up so they don't have to switch my medications. But hey, whatever happens, happens... whether I stress about it or not.

I'll check back in tomorrow. Kisses to everyone, and thanks so much for all the advice!

(Regarding the medical stuff and the insurance coverage, I've heard the rumors... we'll see how it goes. It feels almost impossible to get that approved right now... 😢