Just got my PET results...
Comments
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Well from what I'm understanding of this report, it's metastasized to my liver, femur and possible intestines and maybe thyroid...
Ugh
Tomorrow morning is my Biopsy and it's my 42nd birthday.
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Prettyblue, so sorry.....did your surgeon or some Dr. Explain any of this? I hope they did not just send it to you via email.
I wish I had something positive to say. But this sucks! Your too young to have to deal with such a scary dx.
My stage 3 dx has been difficult, but I was 58 when dx. Hoping for you to get a plan of tx soon. Arethose beautiful kiddos yours?
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good luck with whatever your treatment is. Sorry you have to go through this. A tiny silver lining, I was 40 when I started on this path. I am now 55
. Hope that made you smile a bi
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holeinone,
Hi!
No one explained it. It's just apart of my records that I have access to.
I'm hoping that my surgeon is the one performing my biopsy to mouse that I can ask him about this. I meet my oncyon Tuesday afternoon for my official diagnosis.
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((((Prettyblueyes)))) Hugs and just know that the Stage IV boards are filled with women who are surviving and even thriving in some instances. I know that you are likely very confused and frightened and rightly so but please make sure you join the ladies on that board after your doctor's appt. with any questions. They will help you through these initial scary days. They are extremely knowledgeable and compassionate cause they do know how you feel. Damn, I hate this disease so much!!
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prettyblueyes
I am metastatic and have been for 3 years. Here is the hope; chemo and treatments work. Once you get started the treatmentwill kill the cancer. I had kidney failure a year ago with cancer in my belly around ureters and liver mets. Now kidneys are working. Liver is ok right now.
Hang in there and trust your onc. Get a second opinion if you want. There are many of us living life with cancer. It is a roller coaster ride but you can do this. I thought I was toast last year but NO.
Use the boards for support and info. You are not alone.
Diana
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so sorry for your new dx. Everything can feel overwhelming in the beginning. It is a steep learning curve. You will gain the knowledge you need and it does get better. There is lots of wisdom and support here.
My small piece of info today is that radiation oncologist (RO)are the best at reading and explaining pet scans. If radiation is part of your treatment plan likely the RO will go over scan with you. Sending positive energy your way today.
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Hoping your biopsy went smoothly today and wanted to wish you a Happy Birthday! I know that it is difficult to think in terms of "happy" right now, but still wanted you to know that I am thinking of you...
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I am sorry to hear about your scan results. It is just wrong that you are reading them in your file before someone spoke to you about them. You must be numb, confused and in complete shock at this point.
I was diagnosed at the end of last year while pregnant at 38. Although I felt like I was in a bad dream in the beginning, once things settled and I got on a treatment plan, things improved. I am currently doing well with treatment and living a "normal" life. I work full time, raise my baby and run/do yoga, etc. I would say my quality of life is excellent right now despite this terrible disease.
It is probably hard to imagine right now but there is hope and things will get better.
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Prettyblueeyes, wow, to read that without the doctor being there...
We are here for you. It is already Monday evening as I read this, or I would have told you to call your doctor asap and speak with him. I see you have your appointment tomorrow. I wish you all the best. You will find good advice, information and support on this forum. Hang in there and take some deep breaths. I am sorry for what you are going thru at such a young age. Hang in there
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Whoa to the entire medical profession: what substandard world are we in that a lovely young lady should not have extensive counseling before surgery. She should understand everything. I am not the least bit understanding of that surgeon unless he somehow made it up today.
Blessings to you and your children pretty blue eyes. Know that there are better days coming. Be strong as hard as it is . My heart still aches that you should have this issue. Carolyn from Music City
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Prettyblueyes, I too am shocked that you were allowed to read this news without someone to explain it to you. Yes, you have Stage IV cancer. No you are not going to die tomorrow. I promise. And not for years and years to come.
the first few weeks are a shock and a blur. It will get better. I promise that too. Once you start treatment and the tumor responds, you will find a new normal. I know that sounds trite, but it is true.
I realize it is not a happy birthday, but hang in there. The biopsy will determine your treatment strategy.
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hi everyone,
Sorry it's taken me a while to get back on here.
I had my right breast biopsy this morning. It wasn't too bad but it sure is sore tonight. The radiologist said he didn't think my pathology results would be available to my oncologist by tomorrow. So I called them to see if they still wanted me to come in and they said yes.
I guess it's nice having my records available but maybe not a wise idea for me to read them! But I had to see.. It's hard not knowing what is going on with my body! It's terrifying to have my mind wander to the worst. I don't know what the protocol is for this. I don't know what to ask, when to ask. All I know is that I'm meeting my oncologist and he's going to tell me what to do!
My hubby is in total denial. My kids are all freaking out. My Inlaws are here and cooking but not cleaning up their darn mess and I'm tired but can't sleep.
Im sure I'll be on here most of the night trying to find similar stories.
Good night
Ps It's also my 42nd birthday today.
All in all it was a good day. I had my family withe and I got a really cute hat and some new pots to replant some houseplants in.
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Happy Birthday! Glad you spent the day with family. At the end of the day, that is what truly matters.
The inlaws thing is just icing on the cake
I feel your pain on that one.
I hope appointment goes well tomorrow. I suggest writing down any questions you think of before you go and also bringing something to write down notes about what the doctor says. It is hard to remember everything after the first appointment.
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Orettyblue,
Happy Birthday.....
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Happy Birthday! Being tired and unable to sleep is my specialty. Hope your meeting with the oncologist will clarify what your scans mean. Also, the oncologist will presumably have some ideas about your treatment plan. (You can also ask him for anti-anxiety meds that might help you sleep better. Mine prescribed Ativan.) Ah, Ativan! It's 1:39 am, time to dip into my supply..... Gentle hugs!
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Prettyblueyes I'm sorry you find yourself here, but you are in the right place. We will wait with you for the pathology report. I too was diagnosed Stage IV from the start (exactly 1 year ago today), so I know that 1-2 sucker punch well. I just turned 42 in May.
Your head is going to be spinning for quite some time. If possible I suggest someone goes with you to all of your appointments, because you won't remember half of what was said. I had a second biopsy that I simply forgot about! How does that happen? I agree that asking for anti-anxiety meds is totally appropriate. I had never taken anything before, but Ativan helped me sleep in the beginning, and sleep is important. Eventually it will get better.
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Hi all,
This probably isn't going to make a lot of sense. It's been an extraordinarily hard day.
My oncologist basically said that From the biopsy, yes it's breast cancer! Ok.. That it's metastasized to my axillary, lymph nodes, abdomen, liver and bones. At least that's what the PET showed. He is ordering a brain scan and bone scan.They didn't have all of my pathology results. My HER2 was right in the middle. I am going in tomorrow to take a Braca hereditary test. Ummmm
I get my port in Friday. Chemo Starts Monday. He said he's currently gonna zap the crap outta it so he said he's just treating it as breast cancer. I go once every 3 weeks. He's using a concoction he called A/C chemo. I'm upstairs and to drained to go write out the official name.
He said its Bad. He said its worse that I'm only 42 and just had a baby. He told us he's giving me 3-5 years at best.😢 time is not on my side.
He said we will look into trials but that if we tried to get into them without all my pathology results it's pointless. So I have to wait.
So that was my day.
I'm just numb
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I'm so sorry this is happening to you. It isn't fair. It makes me angry on your behalf. Sending you warm hugs and not that anything will make you feel better today but the doctor was wrong to predict your lifespan. He doesn't know. Take care. I hope you can sleep x
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Hi,
I've been following your posts and just wanted you to know that I think you are a very brave and strong woman and my heart goes out to you. I'm so sorry that your doctor gave you a lifespan... Please don't accept that number he gave you... He does not know that.
I will be praying for you and keep you in my thoughts. Hugs and good vibes headed your way.
You will be fighting hard and you will be okay! Stay strong
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prettyblueyes, I'm just reading up on your posts. Wow, a lot has happened in a short time. Even a birthday! I do hope you were able to celebrate that.
Well, it's time to put on your fighting gloves cuz it's going to be a fight. We've all been through it. And we are here with you. So you keep your eye on the prize...those lil lovebugs who need you. And there will be tears and anger along the way. That's natural. But you do what you can do.
Do you have a good support system? People who can watch the kids? Make you dinners? Go shopping for you? Do your housework? Where do you live? Take all the help you can get. My friends even set up something called a "meal train" for me and they organized meals that were delivered to my house. One organization even sent books and materials how to talk to your kids about BC.
I know lots of support and ideas will be coming your way through BCO.
Keep us posted so we can be your virtual lifeline of support. Feel our love, dear prettyblueyes! One day at a time....
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Prettybleeyes......
I am SO SO sorry....I certainly hope he offered you a script for anti-anxiety meds. If he did not, ask for them. I got them during chemo, and some more afterwards.
I also got the A/C concoction. Every 2 weeks. It was difficult. They call it the "red devil" because it looks like blood. My surgeon told me to take a leave from work, which I did. There are many women who works during this chemo. Not sure how, but they do. We all react differently, but bottom line, it's hard.
Wish I could do or say more. Take your time telling your friends. It's a nightmare having to explain everything, and listening to people tell you to just stay positive. After hearing that a few times, you want to smack them upside the head.
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Bluey,
I'm so sorry you received this news but at have to throw in with everyone else here and say that it's wrong for the doctor to stick a number on your lifespan. One of my good friends and herceptin buddy ( we sit together for our herceptin) was diagnosed stage IV over nine years ago. The doctor originally gave her about 2 yrs....then they started herceptin and a lot changed,, she's still stage IV but she's working, her kids are now in college, she just living her life. No one knows how much time anyone has but to stick a number on anything before you've begun is just plain wrong.
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Just wanted to say that I had A/C and was able to work full time throughout all the infusions. I had plenty of meds to address side effects. I lost my hair, but found a nice wig. It was quite doable. The worst side effect was mouth sores. I ate a lot of ice cream, which helped.
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OH NO! I am so sorry. As the others said, the doctor should NOT have given you a set number of years to live. Still, when you do outlive his 3 -- 5 years (at best) prediction, you can always remind him of his poor forecasting skills.
I second what Letranger said about gathering a support network for assistance. I had a friend who set up a page for me on the "Lots-a-Helping Hands" website, and people signed up to bring meals, supplies for my sons' lunchboxes, and help picking up my daughter from her various sports events. People WILL want to help; they just need to know what your specific needs are.
I agree with Holeinone that it might be helpful if you get some meds for anxiety/depression. Before cancer, I only took one med, for high blood pressure. After cancer, I've come to accept that sometimes, we have to resort to "better living through chemistry."
I also did the Adriamycin and Cytoxan cocktail. It made me spacey and lethargic, but I'm one of the weird ones who worked through it.
Not clear about your cancer's profile --- ER+/PR+? That would be good news. There are a variety of meds which may contain that kind of cancer. Grade 1, 2, or 3? I'm Grade 3, which doesn't sound too good, except that chemo does an awesome job of attacking fast-growing cells. I know you're still waiting on your HER2+ status. In the past, HER2+ was associated with the worst outcomes for breast cancer. However, thanks to targeted therapies like Herceptin and Perjeta, HER2+ ladies are doing better than ever.
Sending you and your family gentle hugs. Hope you visit the Stage IV threads and see that there are many women who are hanging in there and living full lives.
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Prettyblueeyes, I know you are in shock. Please try to take the news and the treatment one step, one day at a time. Try not to project yourself so far in to the future. No one knows what the future really holds. Living in the moment, and yes, I learned to do that after the bc diagnosis, is a coping mechanism that helps.
This forum has a chemotherapy thread. You can get excellent info on how to prepare and what to expect. Each month, new ladies will start a 'chemo of the month' thread, so you can look for one that is "August 2015 chemo thread" and share your experiences with others who are going thru it at the same time as you. I was in the March 2011 chemo thread and it was very supportive and helpful.
Plz ask your onc or primary doctor for antianxiety meds if needed. Some women take antidepressants. Get what you need to help you cope.
We are here for you. Take some more deep breaths.
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Prettyblueyes,
I hope what I am about to say will be helpful to you. My mom was given 2 years to live, 15 years ago, when she was diagnosed with metastatic Stage IV breast cancer. She is still alive and living for 15 YEARS, and still with Stage IV metastatic cancer. She had some great responses (and some not so great responses) to therapy despite the fact that she never became NED (no evidence of disease) during the entirety of these 15 years, and as soon as one therapy failed, another one was discovered and came along. Please know that nobody knows how long you will live, and you may have many many many years ahead of you. I am so sorry that you have to deal with this.
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Yep, I agree with these ladies - your doc has no idea how you will respond to treatment, thus you've got your good health and young age on your side. Do prove him wrong - he's not you and you are not like anyone else in the same shoes. I'm happy to see him throwing the best chemos at this...that stuff means business.
You are right to be upset, distressed and in shock so if you need support, a place to come to to vent, or drugs, accept them all. You deserve everything possible to get through this terrible time right now and I will send prayers to you and your young family for God's mercy.
Amy
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