Scared and really want input getting tests today...

NicoleRod

Not sure if this should be here but someone mentioned maybe I should put it here. If not please let me know as right now I have it in the Chemo section.

Well today I got back my onco results they were very bad. I am 50 years old. My score was a 49. I found out I am still ER+ and HER2- but I am no longer PR+ I am now PR-. On top of that and hearing that I would now need chemo for 16 weeks once every 2 weeks and it will be AC first...and Taxol next. BUT....now they have to do a CT of my chest, abdomen and bone scan of my hips tomorrow because I have been having pain in my hips for about 5 months or so. This cancer was my 2nd. 1st was back in 2014 inSITU stage 0 lumpectomy radiation. This time GRADE 3 Stage 1 same breast double mastectomy no reconstruction.

So I am here to ask if anyone is like me in the sense that their bodies enzymes does not break down meds well. Example... I cannot even take a tylenol with codeen...or a Vicodin because it makes me completely nausea and extremely high like double what the average person would feel. I can't even have caffeinated coffee I feel a buzz. So with that said how the heck is my body going to filter out or process the chemo? I am terrified that I will not be able to handle it. Before anyone thinks I am wussy (ha ha) I have a high tolerance for pain...pain is not the issue for me...I did the MX and I did a septum surgery nose broke with no pain killers not even tylenol till day 3. I am extremely worried though about my body not being able to handle it. I have had Lyme Disease in the past as well but it's in remission for the most part unless I add something it "doesn't like".... yea...also worried about chemo with that. I do only drink plain water and plain seltzer water and lots of it probably 40 oz a day because I have bladder issues (use to have a recurrent UTI) So I definitely drink enough.

Today was awful for me and tomorrow and the next will be even worse waiting for the results to make sure nothing is in my bones I cried most of the day so If anyone has any advice or anything that might be helpful I would be so grateful.

Thanks,

Nicole

Larkin

Nicole, May I be frank with you? You are getting WAY ahead of yourself. Take a deep breath. You are having a reoccurrence that your tests so far so to be STAGE 1. That gives you almost 100% chance of 5 year survival. GRADE 3 just means how fast the cancer grows which is very different than STAGE.

We on this forum have STAGE 4 which is terminal and therefore are actually living your worst nightmare. You might be surprised that many of us live good and generally happy lives even with our diagnoses and many treatments. Don’t let the fear of what might be override the reality of what is.

If your bone scan comes back positive for cancer we can walk you through it. If it comes back clear, you have given cancer days of your life you can’t get back. Don’t live in fear.

• One day at a time and only react to true facts of what is and not what might be.

NicoleRod

Yes I agree with you. I appreciate your reply amd the informstion yiu gsve. Couple of things and the reason that prompted me to post this thread besides wanting some support and information.

1. I believe I read that since the high Onco test score I was upgraded to stage 2

2. I would not be worried about it being in my bones if A. My cancer now wasn't a recurrence and B. My hips hadnt.been hurting for months prior to this.

I read that when breast cancer recurs especially if it is not DCIS besides the breast it most often goes to bone and/or organs. I never read or heard thst this is very unlikely if you are a stage 1?

I am very concerned yes. I will try not to worry. I welcome all the advice..opinions and info everyone wants to give me. Sorry if this post has mistakes I don't have my glasses. Lol

Larkin

Again, even stage 2 is not going to kill you. I’ve never heard of Onco test score being used in relation to staging. Did your doctor say that? Reoccurrences can occur that are not metastatic or stage 4. With the information you have now right this moment you are not facing a terminal diagnosis. Hips can hurt for a lot of reasons besides cancer in the bones such as bursitis, Arthritis or even pain that’s actually radiating from your lower back. Please relax and stop worrying until you know something for sure. If cancer is in your bones you will have the rest of your life to worry about it and if it isn’t you are torturing your mind while you wait.

NicoleRod

ok I am typing without my glasses on so forgive mistakes and typing from my phone when I tried to edit the post I must have hit delete bc it's gone now but here is what it should have said about stage 2 based on my pathology not Onco.

Greatest dimension of largest invasive focus in Millimeters (mm): 21 Millimeters (mm)"

So this means that I have a 2.1cm invasive tumor, making it Stage II.

Sorry for the incorrect info prior.

Larkin

That makes sense. Are you lymph nodes involved?

NicoleRod

They couldnt find them. The dye didnt make it to them. i wasnt trying tio post here in this firum bc i am assuming i have stsge IV i even said in the iriginal post that i only put put it here bc someine mentioned (over in the chemo thread where i origially had it) that i sould put it here for some help..opinions etc. I even said in my original post... Not sure if this should be here but someone mentioned maybe I should put it here. If not please let me know as right now I have it in the Chemo section.

Sorry if it was wrong putting it here.

LaughingGull

Agree with what the others said. I was diagnosed Stage IIB, with extensive node involvement even after chemo, and I am at high risk for recurrence. As terrifying as it is, I have to realize I am lucky, as this still is early stage -at least for now.

I also read a prior comment you posted on some doctor telling your body lacks enzymes to break down medication. Who told you that? Was that an off-the-cuff comment, meant as some hypothesis to explain something that happening to you? How can anyone prove that you lack every single enzyme needed to break down every medication you will ever try, for the rest of your life? I don't drink coffee, which makes me dizzy; I am also not used to drugs, and narcotics make me high. You cannot tell how high other people are on narcotics, compared to you, and if it is double, the same, or half as high. Many medications make me feel nauseous, but I don't think of it as any kind of problem or medical condition. After surgery, I take whatever they give me at the hospital, and at home take Tylenol or Ibuprofen, if it takes some pain away then it worked.

I did well under chemo. Chemo is effective against cancer, and cancer is deadly. It will kill you if left untreated. I would take more chemo if they would give it to me. Take a deep breath and take it one step at a time. Your situation is not easy, nobody said dealing with a cancer diagnosis is easy, but you are anticipating things that may not happen.

NicoleRod

So my test came back fine for the hips but they found 2 spots in liver and said it's suggestive of metastasis. They had 3 prior scans from me from last year and 3 years ago bc I had an anginoma>spelling group of blood vessels spot in my liver, but with that when they found it on CT they ordered and MRI to confirm. With this they are pretty certain from the way it looks it's cancer bc they are ordering a CT needle biopsy. Spent a lot of time crying...but I am numb right now. If anyone has any info on how the CT needle biopsy is done please tell me I am hearing it very painful. My doctor said they do not knock me out. I am waiting to hear when the appointment is.

NicoleRod

Hi LaughinGull I think you misunderstood or I clearly mis-spoke... A doctor mentioned that It could be possible that my body lacks the enzymes that help break down and filter fast enough certain meds/supplements/caffine etc. and a friend also mentioned to me that her doctor told her the same thing (she also has the same issue I have) I never said anyone said "I lack every single enzyme needed to break down every single medication" that was what you said in your post. I also didn't say it happens with every single medication that I take for the rest of my life. However, yes, with certain medications I have a extremely strong reaction and sometimes to point of heart palpitations, extreme nausea, dizzy ness shaking hands, depends on what the medication is. My body is definitely quite sensitive to many things. Many things that the majority of people can take with no problem. I only used Codene and Vicoden as an example. It would even be supplements healthy stuff. Taking the lowest dose.

Also I don't know if you noticed where my post had mentioned that I have Lyme Disease...this is very complex disease that can be very very hard on the body in numerous ways and at times can be in remission. So this is also one of the things that could effect how and my body can react poorly with regards to how it breaks down certain things. So this is also a major concern for me with chemo and its effects on me.

You mentioned I was anticipating things that may never happen. Yes I am because I know my body. I just wanted to see if anyone had similar experiences with meds/supplements etc and did chemo and how they faired. I was hoping someone might be similar to me and actually did great on chemo or could give me some tips.

Now knowing they found the spots on my liver that they said are suggestive of metastasis...yea I didn't anticipate that...that's for sure.

I still welcome all the feedback I can get.

FrackingHateCancerMPBC

Hi there NIcole,

OK, I just stumbled upon this. Probably should move this over to some other thread as I'm not metastatic yet and hopefully will never be metastatic, that said, were all potentially metastatic. But you and I aren't yet.

My numbers suck. But I'm still curable. Once the cancer leaves the breast the word "curable" is no longer used. That said, they're always coming up with new stuff, so who knows. But this is the "now we're no longer curable" space here.

You are afraid of procedures. And afraid of being toxified almost to death like a spider's prey which is what I refer to chemo as. You've lived an entire life KNOWING you are more sensitive to meds. You live in your body, and you like it just fine without drugs and their side effects which are always worse for you, because they are.

I'm sorry about that. Chemo sucks. That needle biopsies gonna suck but not as bad as Chemo. The biopsy is essential of course! F*** Cancer and these archaic torturous procedures. But you will get through it.

About the Chemo, talk to your doctor. Get a GOOD Oncologist. One you LIKE. You COULD tell her you want the lightest chemo they have that will possibly kill/control your disease. They have 2nd generation chemo versus 3rd generation. There's an online tool that helps you run the numbers. You could chose 2nd generation and you could choose none.

I'm sorry if your cancer came back. Yuck! Hate cancer. You are going to be fine. It's true it's deadly and you might die so you need to fight it and try everything at least once is highly recommended and do everything recommended that you can bear and no more. In the end you will still be you and that will never go away. Or you COULD Sign up for the toughest CHEMO they have (which is what they will suggest first usually), take it once. If it seems like it's actually killing you head for the emergency room. Tell them your on chemo and want to be checked for heart attack and stroke. See right there you have a safety plan! So now just don't worry and try it. That's what I did. I'm like you.

Then you can change it or drop out. The thing with chemo is, even if you want it and want it and want it because you want the best possible survival numbers, and you don't get scary neurological side effects which is I'm guessing what you are referring to, sometimes and often you get stopped by the doctor because your body isn't tolerating it.

The Lyme's disease is something to tell your ONCO. A dormant disease can often flare up during chemo. But is LYME"S disease autoimmune or no? Because the autoimmune one's often do better in Chemo rather than worse.

A long franc talk with a good ONCO. I would get a woman if I were you and someone you feel ok crying around. And if they ever tell you to toughen up you drop them immediately and just switch to whoever's across the hall and say you're having communication problems. Unless they give you lollipops and apologize for the toughen up comment. Then you can stay with them.

Some things you will be able to control without worry. You can refuse a port if it's offered for example with no harm to your survival. You can cut your own hair. You can PICK your chemo day of the week! You can get a wig now from the American Cancer Society just in case the chemo is something you chose. They have great wig fitting shops where they fit you with one beautiful wig free of charge.

TONS of water. 40 ounces is not enough water. You need to be drinking 3 liters minimum a day, now and the whole time you are on CHEMO.

EXERCISE: you may not feel like it, but build some muscle mass now if you can. Walk around the block often when you're in chemo. Even if you need a walker to do it. Your doctor will get you one. Do it late evening if you're too embarrassed by a walker. It will make the chemo more bearable. You can always drop out of CHEMO. Also sometimes you get dropped for health, like you said. Don't beat yourself up about your decisions. Just try your best and most of it's in the disease's court anyway.

3 for aggressivity on your grade is high. Very high. Most of us TNBCs have that. It means you blink and BAM tumors doubled. Sucks too. What it really means though is that in your cell sample that they got the cells look not at all like breast cells. They look like completely nonfunctional cells that just keep splitting and doubling themselves. one means looks basically like breast cells, and two is somewhere in between.

I usually post in triple negative. Because I'm TNBC as well as the rare bat shit crazy, serial killer tumor called Meta Plastic. So I'm metaPlastic too. But not metastatic. And still stage 2. I'm sorry if some posters made you feel like you don't belong here in the stage 4 metastatic place, Who'd want to belong here anyway? Until we do. We need to respect the space. Try showing up with positive receptors in the triple negative thread! Whew! Man! It's like, well you are asked politely to move along back to positive receptor land.

You think you might have stage four, and I get it. You could probably see it on the docs faces and you probably just know and you probably are right. But you might not be, and until then, you need to give them their space to meditate and channel the power of healing etc at their level. A few treatments, and a few procedures and you will understand.

All that said, my guess is IF that liver test thing comes back cancerous (and I am well wishing and actually praying too that it doesn't) then you are probably in like flynn here after that I don't know. I'm going to try and start a MetaPlastic thread. I might get no response cause it's pretty rare, but also deadly so maybe I do get responses. And you are welcome to post there until your results come back. With your positive receptors and your new treatments, etc...Hey I saw a whole thread called LIVER METS. They probably have the info you are looking for about the needle biopsy thing!

NicoleRod

Thank you so much for your post. I actually really enjoyed reading it. Ya know its funny I was so worried yesterday about the hips my scan I never even thought something could be wrong with my liver. Oddly enough (and I don't know if this has anything to do with liver) but I have been having nausea lately after I eat. Even just eating a salad. Only for the past 2 weeks or so. I don't even want to look and see if that is a symptom. The way my luck has been going...yea probably is. *sigh* I am down right now and yes I totally agree with your "CANCER SUCKS" !!!! Thats what I am feeling for sure. Thanks for taking time to write all that to me.