New, scared and not sure I can do this.....

ElleOnWheels

Hi all,

I've been lurking since last week when I was diagnosed with metastatic disease and you all are amazing.

I'm having a hard time functioning since I heard those words. I began experiencing double vision and it came and went for about a week when it settled in for good, Went to the doc who ordered a head, brain and neck MRI. It seems I have tumors in my neck, one of which is pressing on a nerve and causing all kinds of trouble.

To say I am scared is a bit of an understatement. But I'm scared to the point of being frozen. I've been to the eye doctor and I have an appointment with an MO tomorrow...but I can't seem to make myself get out of bed, schedule scans....all the fun things that come along with this dx. What if it's everywhere? What if they can't do anything to help me? What if, what if..... All I do is cry.

I haven't put in my signature info yet...another thing I'm having trouble doing....but I'm 58 yrs old and was originally dx in 2001. Yes, SIXTEEN YEARS AGO. I thought my neck pain was just because I was old. So did my doctors. It would be a real kicker if it wasn't breast cancer.

Thanks for listening....I'm all over the place right now.

blainejennifer

Remember how awful you felt the first few days of your primary diagnosis? Quadruple it, because we all fear Stage 4 the most.

You are going to be nutty/depressed/scared/catatonic until you get a treatment plan in place. In fact, I'd be worried about you if you weren't. There you were, with cancer so far in your rearview mirror, I'll bet you didn't even really think about it anymore. And - bam - here it is again. So, yes, your reactions are appropriate to the situation.

Your MO's office should have a nurse navigator. Call her/him and tell them what is happening. They should grab the reins from your hands, and get the process going. That is their job. If they suck at their job, call your MO directly and tell her what is going on. These people are trained professionals, and they know what to do.

Here's some anecdotal blahblah from having been in the trenches now for almost 6 years: 16 years between early and late stage diagnosis is great. You have a really good prognosis, and I am envious of you If those tumors are bone lesions, even better. But - do not under any circumstances - read Dr. Google about your disease until you get a better idea of what is going on. Dr. Google is out of date frequently, wrong quite often, and freakishly insane more than you'd guess. Unless you care abut baking soda being the cure that Big Pharma has been hiding from us. Trust me, open one of those sites, and it is turtles all the way down.

If I were sitting on the edge of your bed right now, I'd counsel getting your MO to escript some Ativan to your local pharmacy right now. Take them. Not all at once, mind you. Then, do something wonderful for yourself. Is there a movie you want to watch? Get a book - full retail ! - that you've always wanted to read. Something completely unnecessary. I bought some kick ass pajamas, since I figured I be doing some high-grade lounging.

Keep us posted. Without these ladies, I'd be in a nice, quiet room somewhere, waiting for evening meds.

All digits crossed for you.

ElleOnWheels

Thank you so much for your reply and great advice. Your kind words and support mean the world right now.

Kandy

Oh, so sorry you have to join our unique group. But you will find that these ladies are not only knowledgeable but they give such support. I second everything that was said above. I would definitely call your MO, and ask to be put on an antidepressant and/or anxiety drug. It is very hard for our mind to get a grip on this. But it's also strange to me how easily we adapt to our new situation. After you get your treatment plan in place and some time goes by. You will realize that life continues on. Best of luck to you. Enjoy the moment.

Lynnwood1960

Elle, you can do this! Blainejennifer said it perfectly! First up..call your doctor and get yourself some Ativan or Xanax..you have just been given a huge shock and this will help you. Once you get all of your testing done, you can get your treatment plan established and that in itself will help. DO NOT look at statistics, that was the first thing my onc told me, they are outdated and do not reflect the newest treatments that are now available. Keep reading and learning here, you will see that many of us are doing well. It will take time, I think I walked around in shock for about 3 months, but you will get used to your new normal. Any questions..feel free to ask, somebody on here usually has the answer.

Fitztwins

Deep breath. Once you get a plan you will feel so much better. Lets hope things turn around quickly.

My advice to the newly diagnosed is to always get on anxiety meds. It helps level things out to deal with this crap sandwich.

I have been dealing with mets for 9 years and I couldn't go on without them.

Hang in there, one day at a time.

Janis

ElleOnWheels

Thank you all so much. I'm going to take you all to the doc with me tomorrow. E

yangtan

I had recurrence after almost 5 years from first diagnosis. It was also in the neck, supra clavicle lymph node. I am 54 and also thought that I was just getting old. With the first line of chemo I brought it into remission within two months and I fired my doctor. Went to another one who patiently explained and listened. I stayed in remission for a year. Recurred and I sent it away. Recurred and I sent it away. Recurred and I just finished first cycle of gemzar. God willing it will be sent away.

It will be three years come this August.There were bad moments but also many wonderful ones too. I still pretend to cook and wash and clean. I have traveled and vacationed with my family the last three years more than ever. The kids are grown up down and I just vacation with whoever is available. God willing I am going to see whales in July.

Yes God willing I will see them graduate next year and I will fly all the way to London in 2019 to attend my Daughter PhD convocation.

One day at a time. One mini project a time and look forward. I m just trusting in God

artistatheart

What they said! And more......Comedy shows, seeing friends, walk in nature, meds.... all that will help you adjust to this new "sucky" situation. You can do this. There will be hard times and great times. Just one day at a time.....

ElleOnWheels

For some reason I'm having trouble sleeping... Your words comforted me greatly and I thank you. One day at a time!

Kandy

we all have trouble sleeping at times. Your mind is on overdrive. Meds for anxiety will help with that. As hard as it is, try to relax and concentrate on living in the moment. No one is promised tomorrow. Try to rest.

Sadiesservant

Elle,

Listen to these ladies. They have been a huge support to me as I work to find a "new normal" after my diagnosis in January. Our stories are very similar. I was initially diagnosed in 2001 and was just short of 16 years out when, at 54 years old, I developed pleural effusion in my right lung. To say it was a shock is an understatement.

Once you have a treatment plan in place you will feel better. For the most part, I stay pretty positive as my prognosis, like yours, is good with so many years between original diagnosis and metastases. I was actually surprised by how upbeat my medical oncologist was in our first consultation, indicating that I should do well "for a good long time" as he put it. I do have the occasional wobble, particularly as we work to find the treatment that will put Pandora back in the box! I had three rounds of Taxol but was not responding and am now on Ibrance/Arimidex and hoping to see some results soon, recognizing that hormone treatments take time to kick in.

You will find this to be an amazing, supportive community with wonderful members willing to answer any of our questions or provide a shoulder when we need it. This is the worst part of the journey right now while you wait for answers but please reach out to us. And feel free to PM me if you want to chat more.

Hugs.

ElleOnWheels

Thank you all so much for all the support. Saw my new MO today who was very kind (and so young!). He's not convinced it's breast cancer which scares me even more. Lots of docs and testing coming up...PET scan, neurosurgeon, radiologists and I had blood work done. No one ever said cancer was boring.

Again, thank you all SO MUCH. You really, really helped me take this first step today.

E

yangtan

you will be surprise how smart we all will be. We are all gathering so much information. I think I know more about breast cancer and the different chemo drugs than my son who is in medical school.

ElleOnWheels

Hi all,

Just wanted to let you know I'm doing ok. We're starting with radiation to my neck/skull to try to get my vision back to normal. Also on steroids which are helping a bit. Going for the mapping session in a few hours.

I had a PET scan last week and the preliminary results are spine and hip mets in addition to the head, Some lymph involvement in my chest. I have an appt with my MO on Thu when i am sure he will schedule a biopsy so we know what we are dealing with.

Docs are funny....MO is quite sure it's not bc because it's been so long. My RO immediately said...ya know, bc is notorious for coming back even decades later. All I know is there is cancer really close to my brain stem and I want it gone NOW!!

Thank you again for all the support...it helped me so much in those first dark, DARK days.

E

Tina2

Elle,

Regarding possible length of time from original diagnosis to recurrence/metastasis: I was diagnosed with Stage I breast cancer in 1985 and in 1995 with a second primary in the remaining breast. I was treated surgically as appropriate at the time, followed for a while and pronounced cured. Fast forward to 2011, when the nodules and fuzzy areas in my lungs that my pulmonologist swore had to be lung cancer turned out to be breast cancer.

Your MO may be too young to have seen a patient who developed or was found to have metastases after many years, but that does not mean it doesn't happen. I am living proof that it does. Look at my signature info below and take heart!

Tina

DivineMrsM

ElleonWheels, well, you picked a good screen name. It is my hope that you reach an emotional point where you can BE just that, and kick effing bc to the curb.

I very well remember being very, very scared and freaked out the first months after the mbc diagnosis. I was scared sh-t-less to click on this particular stage iv section, so frightened! But.....when I did, I found such, such good companions here who walk thru cyberspace with me as we all together experience similar things with this disease.

I agree with all who say antianxiety and or antidepressants will be a big help.

Yes, take this one day at a time. Focus on just today, or just this hour. All the testing and doc appts. are maddening, but necessary and you are taking care of what you need to do right now. My best to you.

singlemom1

Elleonwheels - I agree with what everyone else said - ask for anti-anxiety meds and take one step at a time!  The first few months are very scary but I also agree that once you start on a treatment plan that will help.  I also wanted to mention the importance of a support system! I don't have much family but my friends helped me a great deal the first few months.  I am not sure of your circumstances but if you have people in your life that you are close to, don't be afraid in asking for support and seeing if someone can attend doctor appointments with you.  Just know we all understand your fear and anxiety. Keep us updated. 

HelenFaith

Hello Ellonwheels, your screen name brings back lots of memories for me, My mother use to call me H----on wheels when I was growing up, because I was and my husband would say I still am.

Recently, I too joined this group and was terrified out of my mind. I went from being diagnosed with a Pleural Effusion caused by Pneumonia to the Effusion caused by Breast Cancer. I was shocked as there is no history of breast cancer in my family and I have always been a very healthy person (seriously never got sick). I received the actual diagnoses on March 30th and the following week was a whirlwind of having my lung drained, scans and lots of blood work.

All the results came in by the end of the week and again, I needed to have my lung drained the following week, the port placed the next day and started chemo the following day. It was all so much at once, I didn't have much time to think.

Like you I thought "I can't do this", but I also knew I wanted to and needed to do all I can. I remember being crippled by fear and anger, so I choose anger to drive me to do what I needed to do. At the beginning of a diagnoses the appointments were a lot and starting chemo was emotionally draining. Fast forward, I just completed session #6 of chemo and doing better than I thought I would. Life has settled down and my emotions are better than I thought they would be.

My doc gave me anti-anxiety meds, which I took for the first few days of the diagnoses, but haven't taken them since. Everyone is different and should give themselves what they need to be healthy. I am a social worker/advocate for people developmental disabilities and continue to work, as I love my job dearly. I usually travel to our state capital (1 hour flight or 5 hour drive) to legislate for policies that impact people with DD, but haven't traveled since my diagnoses, but I am scheduled to travel in June and July.

I share with you from one newly diagnosed person to another newly diagnosed person, to let you know you are not alone and to encourage you to find what works for you all while you lean on your support system.

Take care,

Bestbird

I am so glad you have found this forum although I'm terribly sorry for the circumstances that brought you here.

The initial weeks and months after a mets diagnosis are the hardest. Dealing with the shock and fear can be very difficult. But as others have said, over time it gets a bit easier. I know a bit about how you are feeling, since I was diagnosed with metastases 18 years after my "early stage" breast cancer.

If it's possible, have the met(s) biopsied to see what their estrogen (ER), Progesterone (PR) and HER2 status are, since they may differ from the original cancer (if you were previously diagnosed). If the cancer is ER+ and/or PR+, then the oncologist should be considering hormonal treatment, and if it's HER2+ then Herceptin and Perjeta may be considered along with a Taxane. Additionally, you may want to request testing to see whether the tumor has Androgen Receptors (AR), since there are some promising clinical trials that target Androgen Receptors in a similar manner as current hormonal therapy targets Estrogen Receptors (ER).

Even if you are hormone receptor negative (ER- and PR-) you may still consider hormonal therapy according to the latest (2014) National Comprehensive Cancer Network (NCCN) Guidelines, "Patients may be candidates for hormonal therapy irrespective of their hormone receptivity status, provided that their cancer is in the bones, soft tissue (muscle, fat or nerves), or internal organs and is not causing symptoms. The reason for suggesting hormonal therapy is because sometimes the metastasis is indeed hormone receptor positive and the actual test results are incorrect. (This represents a major shift in thinking regarding potential therapies for TNBC and hormone receptor negative patients). From: http://www.nccn.org/patients/guidelines/stage_iv_breast/index.html#33/z

Please remember to keep copies of all tests results and scans in case there eventually is a need or desire to have a second opinion from a specialist outside your medical network. You may also want to seek a second opinion at any point about treatment.

I believe that knowledge empowers us, and when you feel up to it you may want to begin learning about the disease so that you can become a partner with your medical team regarding your treatment options.

I've compiled a 136-page booklet about Metastatic Breast Cancer treatments, side effect mitigation, and cutting edge research regarding the disease.You are welcome to request a complimentary copy by visiting the top of this page: https://community.breastcancer.org/forum/8/topics/...

Two published books which you may want to read are:

"Anti Cancer: A New Way of Life" by Dr. David Servain-Schreiber.The author, an MD, was diagnosed with a malignant brain tumor which he survived for nearly 20 years by following the science-based principles described in his book.It contains excellent information about diet and supplements, as well as emotional well-being.

"Life Over Cancer" by Dr. Keith Block, an expert in integrative oncology who combines cutting-edge conventional treatment with individualized and scientifically-based complementary therapies.This book is an excellent resource for those who are interested in combining conventional and complementary therapies.

Please post if you have questions, and wishing you a great outcome!

hellokrystal

Hello, Elle!

I can only imagine how difficult it must be. Although i am not going through this myself, I have to see my 55 year old mother suffer from metastatic BC. My mom was diagnosed this year, around April. She did not take it very well, and your post reminded me of her. The first few weeks (or months, I should say) after the diagnosis was hard on my entire family. I am happy to say that she is doing much, much better. It does get to her, especially since she has a brain tumor that has impaired her balance and so she is essentially dependent at the moment. She also had throbbing headaches and had blurry vision occasionally. It's been difficult for her to accept that she can no longer walk or drive wherever she wants. My mom, however, has been so much more positive than ever before. I often read her stories about long term survivors who beat the odds, and she has been more involved with her faith. She, as well as my entire family, have hope and faith that she will be around for a long time! The doctors do not have the final word, after all!