Stage 4 metastatic breast cancer

Every cancer is different, I think you may find your answers if you are able, to go to her dr. appointment with her.

What kind of breast cancer? (I'm Her2+, ER & PR-) IDC with affected lymph nodes.

I'm getting a bone scan, full body CT scan and MRI today (spending the whole day at the hospital) to see what stage-hoping it's not stage 4. I'm having a lot of really bad symptoms, I suspect it's in my bones and lungs, hoping it's not. They are saying for sure chemo, some Herceptin cocktail for one month, re scan to see if things are shrinking, then surgery (mastectomy) as none of my breast is savable, possibly both if lymph nodes in other side need to be removed, then more chemo, then radiation. Assuming my heart is healthy enough for all that. I've been very healthy up to this point but in the last 3 months my health has declined rapidly. I'm 54 yrs. old, very active, in decent shape, eat very healthy, don't smoke, don't eat a lot of processed foods. My breast tissue is so dense I could not feel the lump. I think I've had cancer for many years and just didn't know. I developed Paget's-a secondary cancer of the breast, which brought me to the dermatologist for a biopsy and boom....cancer. I'm 3.5 weeks from that original diagnosis and it has taken this long for a CT scan, bone scan and MRI. It takes so long for each step, then waiting....I wanted them to schedule the whole shebang right away but they would not listen to me. "This is the protocol" they say, one step at a time. My response to them: This is my life!!! Then they say-cancer takes years to develop, not weeks, nothing is going to change that fast....OK that may be true, but in the meantime I'm experiencing pain that I've never felt before in my ribs, chest, lungs, back, arms, neck...I can feel things happening to my body. I'm getting weak. I know a lot of people react that way when they get a cancer diagnosis but I really do feel that things are moving really fast inside my body right now. They did say my tumor is "very aggressive" so is it possible I'm not crazy? I told them before they did a lymph node biopsy that I know it's in my lymph nodes because I can feel it, I'm experiencing what feels like lymphedema, my lymph nodes are so swollen and painful...I know I sound crazy. When they did an ultrasound on my lymph nodes the nurse showed me what she was seeing and almost all of my lymph nodes were black (cancer) I really hope I'm wrong about my bones and lungs but so far I've been right...I do not want to be right today!

I’m so sorry for what you’re going through. I’ve had breast cancer for over 2 yrs. Mine is also rare and aggressive. I understand what you’re going through, the fear, the anxiety, the unanswered questions about YOUR body, the ticking of time that’s passing achingly slow or as fast as a cheetah when you’re in Sloth mode and need it all to Stop. I wanted to address what you wrote about their comments to you. My cancer was diagnosed in Sep. 2021 when it was 2.4cm. The lumpectomy was in Dec. 2021 and the tumor had grown to 4.8cm. Mine is rare and mine is like the speed of light compared to most. So, you have every right to feel what you do and you are correct. This is your life, you are the biggest advocate for your life and no one cares about it as much as you. You are the best detective of yourself and know what they don’t. They’re used to dealing with so many cancer patients sometimes that they forget that we are not standing and getting frustrated in some DMV line waiting for our ticket to be called. Anyways, good luck and sorry for the long comment. Goodnight~ Mayumi

It may not be that the doctors are waiting around. My insurance takes a few weeks to approve PET scans, biopsies, etc. It seems like forever to get these tests done to see the cancer's progression. I'm hoping you get some relief soon.

So sorry to hear you're having such a hard time. I hope things have improved since you posted this. And if you have posted an update, I will look for it and hope it's brighter. I am the caregiver for my wife (83) who had a mastectomy and lumpectomy 4 years ago. And some radiation about a year ago. It's currently Stage 4 and she has some skin metastasis going on, along with pain from the new tumor that's been growing. We have had some success with Ibrance and Letrozole, but when it stopped working after 16 months, we were changed to Faslodex and Kisqali. Neither of those worked for her, so we are going to start Xeloda in a week or so. Her doctor speaks highly of its success rate. Hope she's right. Your comments describing your weakness and tiredness hit close to home. My wife was always full of energy until the cancer descended on us. Now, like you, she has trouble maintaining enough energy to walk from the bedroom to the kitchen. I hope your doctors take some action pretty soon so you can get your strength back. You hang in there! We are all here for you.

My mom (58) was diagnosed with Stage 3 IBC at the beginning of COVID, and since then in June it's progressed to Stage 4 TN IBC with Spine, Hip, and Liver mets. I'm not great at being an optimistic person either but she's shown me what true strength is.

I don't know the names of all the chemos

My mom got Stage 3 IBC at the beginning of COVID that slowly became TN and then Stage 4 with mets to bone (c-spine and hip) and liver over the summer.

She's fought hard. I know everyone says the person going through it is the strongest person they know, and I get that now. I would have given up a long time ago to be real, but she has. I found out recently that her liver is basically at End Stage Cirrhosis... They are giving her a chemo to see if they can bring the BC lower but if they don't…

I'm not an optimistic person but I want to say this. My mom has one of the rarest forms of one of the rarest forms of breast cancer. And yet even shocking the MOs sometimes she's bounced back from some situations that don't make sense. Just two months ago her WBC count was at like 5,000 (you should be at 100,000 as a person taking chemo) and yet she bounced back to over 100,0000. In September her bilirubin was over 6 (it needs to be 1.2) and she's gotten back to under 4.0 and decreasing. She's a diabetic and at one point her blood sugar was like 500 and now it's 180-200. These are not exaggerations.

I have learned what true strength is. I have seen the face of a warrior. She keeps bouncing back from ridiculous situations. Realistically, her prognosis is very poor. I am a person who doesn't like false optimism and "pray for a miracle" hope. She doesn't have much time left. But she fights and she squeezes out time that I am shocked she has. It actually makes me feel terrible that I have been quitting mentally.

All that to say, encourage your mom to fight. Those Mets do not mean it's game over. Those Mets are not instantly a death sentence. My best friends Uncle has Stage 4 cancer of an organ in the abdomen, I forget which, but it metastisized everywhere. That happened 4+ years ago. He has to take chemo everyday but he's fighting and he's here, and gets to spend time with his family even with a poorer quality of life.

I don't think it's a bad idea to say you don't want to do treatment and just let things take their course and be comfortable, it's just as valid an option as fighting…

But don't give up and encourage your mom to not give up if you decide to fight. It's not over until it's over, but over doesn't have to be tomorrow, or this month, or this week, or years from now. She just has to keep fighting while she can.

Sorry for the essay, I hope any part of this helps.