My trip to the ER

MsGebby

Crying because I can't understand any of this. I had an appointment with my PCP today. (having terrible allergy attacks) I mentioned that I have pain in my chest on the same side of breast cancer. She was concerned and wanted to order a CT scan NOW rather than wait til the end of July for the scan that the onco doc ordered.

SO, I make an appointment with the NP and she said this is something my doctor has to hear about. He was in the office today and came in to hear my story. I am in so much pain in my chest and it was so obvious to him. He called for an ambulance and had me sent to the ER. The ER doc was thinking possible gallstones. I was feeling relief and went along with the plan for an MRI. I had blood drawn too (not sure what they were looking for). Next came a CT scan. I waited another hour for the ER doc to come back to me with the news. It's not good.

He said the nodules have doubled and tripled since my last scan. That was one month ago. WTH is going on! My oncologist was alerted and he decided not to keep me there for further tests or whatever and I was released so I can have further tests in his office. THIS makes no sense to me. I have to make an appointment! REALLY???!!!! I am beside myself with so much angst and fear. I KNEW in my mind that this was definitely a sign of something bad before the docs did. I pray everyday for help in coping with the uncertain future. Now I need to find strength to get through this next phase. The nodules are NOT hormone triggered. If they were, then Arimidex would be shrinking them. Right? I am soooooooooooooooooooo scared.

Right now, I am thinking I just want to get my hands on a copy of the report and high tail it to Sloan Kettering. I mean, why would my oncologist pull me out of the hospital and make me wait for more tests?

Would chemo be started WITHOUT knowing what these nodules truly are? Wouldn't I need some sort of biopsy first? What happens next???

OMG OMG OMG

Please ... help me. Please pray for me. Please hug me. I really need you all. OMG

ksf56

Prayers being sent!
I'm so sorry for what you're going through! I can only imagine how scared you are. I hope you get answers sooner rather than later - waiting is horrible!

Please know I'm thinking about you, praying for you and sending hugs your way!

Let us know what's up!

Karen

missrenee

ksf56 said:

Prayers being sent!
I'm so sorry for what you're going through! I can only imagine how scared you are. I hope you get answers sooner rather than later - waiting is horrible!

Please know I'm thinking about you, praying for you and sending hugs your way!

Let us know what's up!

Karen

Oh sweetie, I am so sad for your frustration and pain
Before any treatment was started with me for my recent finding of bone mets, I had an MRI, CT, Bone Scan, PET scan which all pointed to bone mets. However, before any treatment was even started, they had to do a bone biopsy to make sure the cancer was mets from breast which it was.

I know this is a scary, horrible time for you. I'm sure your doctor will be prescribing the tests you need, but I'm thinking a biopsy will also be necessary to make sure of what you're dealing with.

You will be in my prayers for sure.

Hugs, Renee

LoveBabyJesus

So sorry
I can feel your frustrations reading each line from your post. And I actually felt it with you. There is nothing more ANNOYING than when your OWN DOCTORS DO NOT LISTEN to you. We all know our bodies better than anyone else out there!! I don't understand this. They should at least do it to protect themselves, legally. No?

I would go with the first instinct you feel. I think you should forward your report (and whatever additional information you need) to Sloan if this is what your heart tells you to do. Go with your gut! Sloan is an excellent hospital. I go to the one in NYC and they are very careful and very diligent. I say you go get a second opinion if you feel you're not given the attention and time you deserve!! UGH!!!!!!!!!! I am angry for you.

Additionally, please know you'll be in my prayers. I know you are scared. I know that fear well so we get it. But you are not alone. And we are right here with you.

I pray you stay calmed. I pray you stay positive. And I pray for the best treatment you can possibly get and that it works (with little to no side effects) - in the name of Jesus Christ.

Sending you a HUGE hug from here. Hang in there!

Ritzy

ksf56 said:

Prayers being sent!
I'm so sorry for what you're going through! I can only imagine how scared you are. I hope you get answers sooner rather than later - waiting is horrible!

Please know I'm thinking about you, praying for you and sending hugs your way!

Let us know what's up!

Karen

I am so sorry..what a
I am so sorry..what a nightmare. I would contact Sloan and get a 2nd opinion as soon as possible. I wouldn't wait.


Praying,

Sue

salls41

Prayers for you
I am so sorry, I can not imagine how you feel. Prayers for you from me and {{{Hugs}}}
Sandy

MAJW

LoveBabyJesus said:

So sorry
I can feel your frustrations reading each line from your post. And I actually felt it with you. There is nothing more ANNOYING than when your OWN DOCTORS DO NOT LISTEN to you. We all know our bodies better than anyone else out there!! I don't understand this. They should at least do it to protect themselves, legally. No?

I would go with the first instinct you feel. I think you should forward your report (and whatever additional information you need) to Sloan if this is what your heart tells you to do. Go with your gut! Sloan is an excellent hospital. I go to the one in NYC and they are very careful and very diligent. I say you go get a second opinion if you feel you're not given the attention and time you deserve!! UGH!!!!!!!!!! I am angry for you.

Additionally, please know you'll be in my prayers. I know you are scared. I know that fear well so we get it. But you are not alone. And we are right here with you.

I pray you stay calmed. I pray you stay positive. And I pray for the best treatment you can possibly get and that it works (with little to no side effects) - in the name of Jesus Christ.

Sending you a HUGE hug from here. Hang in there!

This sucks!
Mary, so sorry about this...it seems like many of us get over one hurdle and another shows up just waiting around the corner! What possible tests could be done in your doctor's office that would give you definite results? Doesn't make sense on the doctor's side...When my bc returned it came back in my lymph nodes, with some around my lung but the only one that biopsied was the one above my clavicle node...my onc said it was risky to biopsy the other nodules and from the one biopsy he knew it was my triple negative bc...and treatment is the same...I'm back on chemo again and I will have it from now on....ugh!

It's my understanding that the Arimidex is an estrogen blocker and not an actual treatment...others I'm sure will chime in...

I would ask your onc for a referral to Sloan...he should have no problem with you wanting a second opinion...if he does find another one!

Keep us posted, you know we care..
Hugs, Nancy

jamiegww

WOW!
Mary:
You need to have a serious discussion with your onc about what his "gameplan" is and if he can't convince you he is doing everything possible to diagnose and treat whatever is going on, then you need to follow your own instincts and go to Sloan Kettering or maybe you just need to go ahead and go. I'm praying for you!

HUGS!!!
Jamie

survivorbc09

salls41 said:

Prayers for you
I am so sorry, I can not imagine how you feel. Prayers for you from me and {{{Hugs}}}
Sandy

Praying for you.
Hugs, Jan

Praying for you.


Hugs, Jan

camul

Wow!
I certainly would get a second opinion, however, when I first had nodules which showed up at the same time as the mets, my onco didn't want to do a biopsy unless they changed because it is invasive. But with yours growing and having pain, I would certainly press for some kind of confirmation, if not from him then from Sloan Kettering or any number of the excellent facilities in the city.

How long do you have to wait to get in to see him so you know what his plans are. I would call the office and put some pressure on. They may see this all the time, but you don't and it is your life.

Prayers to you,
Carol

mom62

Hugs
Mary,

My arms are wrapped around you in a big hug. I'm glad you found out about the growth, but I agree waiting for tests and results can be the most frustrating thing in the world. I would have thought he would have had them biopsy it right there before sending you home, but the insurance company probably didn't like that, damn them. I understand you being scared I would be too. Actually I am too, going for a bone scan in a week and 1/2. I have had a lot of pain in my lower back lately and my ribs are still hurting. I'm on the Arimidex and Lupron shots every three months. I will be saying prayers for you. I was crying reading your post as I know exactly how you feel. You are one brave woman though to be through all you have. Keep your chin up.

(((hugs)))
Terry

SIROD

2nd Opinion is Needed
Dear Mary,

You believe in God but there is an old saying that "God helps those who help themselves". This has been going on since Christmas according to my emails with you. What is taking you so long to go for a 2nd opinion at Sloan Kettering. It sounds like the oncology practice your hooked up with needs to CTA (cover their a--). What kind of lung test can he do in his office? VATS (video assisted thoracic surgery) are done in a hospital OR. It wasn't a bad surgery, as they go, it was an easy one. Overnight stay, out of work for 5 days and then back with no problems what so ever.

Why wait? You can not ignore while the nodes are enlarging. You need someone who is good. Cancer does wait for the right time, it's there and you have to deal with it.

Maybe these nodes are not responding to hormonal therapy. Maybe you have a second cancer somewhere that is negative. I had a friend who was positive and then shortly later turned negative, so hormonal therapy didn't work. Not saying this is the case for you but it might be something to consider.

Tamoxifen, a hormonal therapy never worked for me and I am was very hormonal positive. Aromatase inhibitors were the kind of drug that has given me many years.. One size doesn't fit all. Hormonal therapies are the answer for those who have ER & PR positive cancer over chemo therapies.

In 2008 I had widespread lungs & lining mets, so noted that I was studded with tumors. I had no pain at all in the lungs or lining. I had a slight cough, nothing to get excited about, so I wonder where your pain is coming from that you keep mentioning. Bone is painful but lungs usually are not until it is progress so far that one can't breathe. Even now though I do have a lot of the lungs, lining involved according to the ct scan, it is not painful.

Seek a 2nd opinion that is my advise to you.

Wishing you the best as you go through this crisis.

Doris

MsGebby

I called SLoan Kettering
Finally! I'm too scared NOT TO. After telling my story, the nurse I spoke with said a biopsy is truly needed. I couldn't believe that someone finally agreed with me. I got ALL my reports and doc notes to send to MSK. Well, I was surprised to read in almost every doc note that I was offered VATS and that I declined each time. I'm like, WHATTTTT???!! The first onco doc would say "we will do VATS if you want to" but then she would tell me what could happen (lung collapse and whatnot) and that it is very risky. She would also say her systemic therapy approach not change if it is mets. Her belief was that it would be breast cancer which is highly ER/PR+ and that would be all I need. Well, here it 3 months into taking Arimidex and the nodules keep growing and multiplying. My heart tells me it is NOT mets from breast cancer. 6 nodules have doubled in size and 2 more were found since the last CT scan 1 month ago. What am I to think?

Anyway, I faxed 50 pages to MSK. The gentleman I spoke with there (thoracic surgery department) was so kind. He was doing his level best to keep me from completely falling apart. He said the reports I send him will be scrutinized by the team of doctors who will be in charge of my care. He tried to tell me that he sees this all the time and that it may not be as bad as I think. He feels that I am being proactive and that my call at this time just may bring the best possible news if it this is cancer. He feels I may be Stage 1 because it sounds like I jumped on this so fast. Now I wait for a call from this facility. If I need surgery to resection my lungs, it will be in NYC (i live in NJ). Treatment can be performed in NJ. That facility is 35 minutes away. I think I am jumping the gun talking about surgery and treatment. I honestly hope I need either.

I am such a mess right now.

I want to thank you all for holding me up. I truly feel blessed, Thank You Thank You Thank You.

Please know that once I have more information then the OLD Mary will be back. I function better when I know what I am up against. I am trying to stay positive. My faith is still very strong. It's just that I feel so little ... so weak ... so scared ... at the moment. I didn't think I would break down. I mean, I've been down this road once before. But this is looming so large, it's just unimaginable to me. Please excuse me for sounding so negative. I am not trying to go there.

I am looking forward to the nice weather that will be here for the weekend. I have plans to visit with Dad in PA for Father's Day. I just hope I don't lose it when I am there. He doesn't know and I have no plans to tell him. Not just yet ... hopefully my fears will be for naught. One can hope, right???

DebbyM

MAJW said:

This sucks!
Mary, so sorry about this...it seems like many of us get over one hurdle and another shows up just waiting around the corner! What possible tests could be done in your doctor's office that would give you definite results? Doesn't make sense on the doctor's side...When my bc returned it came back in my lymph nodes, with some around my lung but the only one that biopsied was the one above my clavicle node...my onc said it was risky to biopsy the other nodules and from the one biopsy he knew it was my triple negative bc...and treatment is the same...I'm back on chemo again and I will have it from now on....ugh!

It's my understanding that the Arimidex is an estrogen blocker and not an actual treatment...others I'm sure will chime in...

I would ask your onc for a referral to Sloan...he should have no problem with you wanting a second opinion...if he does find another one!

Keep us posted, you know we care..
Hugs, Nancy

I'm sending you prayers and
I'm sending you prayers and big cyber hugs Mary.


Hugs, Debby

rallendorfer

MsGebby said:

I called SLoan Kettering
Finally! I'm too scared NOT TO. After telling my story, the nurse I spoke with said a biopsy is truly needed. I couldn't believe that someone finally agreed with me. I got ALL my reports and doc notes to send to MSK. Well, I was surprised to read in almost every doc note that I was offered VATS and that I declined each time. I'm like, WHATTTTT???!! The first onco doc would say "we will do VATS if you want to" but then she would tell me what could happen (lung collapse and whatnot) and that it is very risky. She would also say her systemic therapy approach not change if it is mets. Her belief was that it would be breast cancer which is highly ER/PR+ and that would be all I need. Well, here it 3 months into taking Arimidex and the nodules keep growing and multiplying. My heart tells me it is NOT mets from breast cancer. 6 nodules have doubled in size and 2 more were found since the last CT scan 1 month ago. What am I to think?

Anyway, I faxed 50 pages to MSK. The gentleman I spoke with there (thoracic surgery department) was so kind. He was doing his level best to keep me from completely falling apart. He said the reports I send him will be scrutinized by the team of doctors who will be in charge of my care. He tried to tell me that he sees this all the time and that it may not be as bad as I think. He feels that I am being proactive and that my call at this time just may bring the best possible news if it this is cancer. He feels I may be Stage 1 because it sounds like I jumped on this so fast. Now I wait for a call from this facility. If I need surgery to resection my lungs, it will be in NYC (i live in NJ). Treatment can be performed in NJ. That facility is 35 minutes away. I think I am jumping the gun talking about surgery and treatment. I honestly hope I need either.

I am such a mess right now.

I want to thank you all for holding me up. I truly feel blessed, Thank You Thank You Thank You.

Please know that once I have more information then the OLD Mary will be back. I function better when I know what I am up against. I am trying to stay positive. My faith is still very strong. It's just that I feel so little ... so weak ... so scared ... at the moment. I didn't think I would break down. I mean, I've been down this road once before. But this is looming so large, it's just unimaginable to me. Please excuse me for sounding so negative. I am not trying to go there.

I am looking forward to the nice weather that will be here for the weekend. I have plans to visit with Dad in PA for Father's Day. I just hope I don't lose it when I am there. He doesn't know and I have no plans to tell him. Not just yet ... hopefully my fears will be for naught. One can hope, right???

I feel so strongly on your behalf that you took the right path!!
I am relieved as can be that you took this in your hands and changed. I was livid about the other doctors. I feel a great sense of peace that you are in better hands. I have the best doctors in Ohio at the Seidman Caner Center, and believe me if they could not find a cure or fix a problem I would at least have peace of mind that they did the best that could be done. When you said the original doctor, after knowing what was happening, wanted you to schedule an appointment....Becky blew a gasket! I took your situation to the Chapel of Poor Clare Monastery yesterday and prayed for you my sister!!!!! Just me and God...and you.

Warm grandmotherly hug and lullaby to calm you going your way,
Rebecca

VickiSam

rallendorfer said:

I feel so strongly on your behalf that you took the right path!!
I am relieved as can be that you took this in your hands and changed. I was livid about the other doctors. I feel a great sense of peace that you are in better hands. I have the best doctors in Ohio at the Seidman Caner Center, and believe me if they could not find a cure or fix a problem I would at least have peace of mind that they did the best that could be done. When you said the original doctor, after knowing what was happening, wanted you to schedule an appointment....Becky blew a gasket! I took your situation to the Chapel of Poor Clare Monastery yesterday and prayed for you my sister!!!!! Just me and God...and you.

Warm grandmotherly hug and lullaby to calm you going your way,
Rebecca

Prayers and Strength, I pray for you.
This new SUCKS! However, now you have the information to get you going
in the right direction. My suggestion, grab your research, patient
information, scan results -- (after visit with Oncologist), and head to Sloan.

Regardless of what treatment is in your future, we are here for you
offering support, friendship, prayers and Hope.


Vicki Sam

SIROD

MsGebby said:

I called SLoan Kettering
Finally! I'm too scared NOT TO. After telling my story, the nurse I spoke with said a biopsy is truly needed. I couldn't believe that someone finally agreed with me. I got ALL my reports and doc notes to send to MSK. Well, I was surprised to read in almost every doc note that I was offered VATS and that I declined each time. I'm like, WHATTTTT???!! The first onco doc would say "we will do VATS if you want to" but then she would tell me what could happen (lung collapse and whatnot) and that it is very risky. She would also say her systemic therapy approach not change if it is mets. Her belief was that it would be breast cancer which is highly ER/PR+ and that would be all I need. Well, here it 3 months into taking Arimidex and the nodules keep growing and multiplying. My heart tells me it is NOT mets from breast cancer. 6 nodules have doubled in size and 2 more were found since the last CT scan 1 month ago. What am I to think?

Anyway, I faxed 50 pages to MSK. The gentleman I spoke with there (thoracic surgery department) was so kind. He was doing his level best to keep me from completely falling apart. He said the reports I send him will be scrutinized by the team of doctors who will be in charge of my care. He tried to tell me that he sees this all the time and that it may not be as bad as I think. He feels that I am being proactive and that my call at this time just may bring the best possible news if it this is cancer. He feels I may be Stage 1 because it sounds like I jumped on this so fast. Now I wait for a call from this facility. If I need surgery to resection my lungs, it will be in NYC (i live in NJ). Treatment can be performed in NJ. That facility is 35 minutes away. I think I am jumping the gun talking about surgery and treatment. I honestly hope I need either.

I am such a mess right now.

I want to thank you all for holding me up. I truly feel blessed, Thank You Thank You Thank You.

Please know that once I have more information then the OLD Mary will be back. I function better when I know what I am up against. I am trying to stay positive. My faith is still very strong. It's just that I feel so little ... so weak ... so scared ... at the moment. I didn't think I would break down. I mean, I've been down this road once before. But this is looming so large, it's just unimaginable to me. Please excuse me for sounding so negative. I am not trying to go there.

I am looking forward to the nice weather that will be here for the weekend. I have plans to visit with Dad in PA for Father's Day. I just hope I don't lose it when I am there. He doesn't know and I have no plans to tell him. Not just yet ... hopefully my fears will be for naught. One can hope, right???

The Unknown Is Often Worst to Deal With Than The Reality
I am so very happy that you called.

That is why it is so important to have the notes. I have read things in notes that were never stated at the appointment. It is good to have their notes to be on the same page with the doctor. Maybe they think they told you but many times they didn't.

Mary I am hoping soon it will be all resolved. You have had a hell of a ride with this for nearly a year.

Thinking positive thoughts for you,

Doris

Double Whammy

SIROD said:

The Unknown Is Often Worst to Deal With Than The Reality
I am so very happy that you called.

That is why it is so important to have the notes. I have read things in notes that were never stated at the appointment. It is good to have their notes to be on the same page with the doctor. Maybe they think they told you but many times they didn't.

Mary I am hoping soon it will be all resolved. You have had a hell of a ride with this for nearly a year.

Thinking positive thoughts for you,

Doris

Double Wow
So glad you took proactive steps in getting this resolved. And I hope and pray whatever this is, it will be responsive to whatever is thrown at it.

Do you have appointments with Sloan? I'm confused about whether you've even got an appointment with your own oncologist or have talked to anyone there yet. Has your chest pain resolved at all?

I hope you can have a happy visit with your dad on Father's Day tomorrow.

Sending prayers and positive thoughts to you.

Suzanne

MsGebby

SIROD said:

The Unknown Is Often Worst to Deal With Than The Reality
I am so very happy that you called.

That is why it is so important to have the notes. I have read things in notes that were never stated at the appointment. It is good to have their notes to be on the same page with the doctor. Maybe they think they told you but many times they didn't.

Mary I am hoping soon it will be all resolved. You have had a hell of a ride with this for nearly a year.

Thinking positive thoughts for you,

Doris

I got a chance to read the ER reports
with more attention. Meaning ... I stopped crying long enough to see what was written. One other note says "there is 7mm hypodense heterogeneous nodule in the right lobe of the thyroid gland". CRAP! The last scan says this nodule was 4.2 mm. That scan was in April. What the hell is going on??? The first scan was calling the nodule complex. I am trying to figure out if complex and hypodense are the same. Either way, the info I did find points to this being a cancer as well.

*sigh* I don't know what to feel. I don't want to feel. This report was sent to Memorial Sloan Kettering. I hope they pick up on it. If they don't I will be sure to mention it. I have all the pertinent blood work tests coming in a couple of weeks for the thyroid. One of the reports noted that my AST levels were high. Those are related to the thyroid function.

Does this ever end? Of course it does ... on the other side of the grass! WHY WHY WHY

Kylez

MsGebby said:

I got a chance to read the ER reports
with more attention. Meaning ... I stopped crying long enough to see what was written. One other note says "there is 7mm hypodense heterogeneous nodule in the right lobe of the thyroid gland". CRAP! The last scan says this nodule was 4.2 mm. That scan was in April. What the hell is going on??? The first scan was calling the nodule complex. I am trying to figure out if complex and hypodense are the same. Either way, the info I did find points to this being a cancer as well.

*sigh* I don't know what to feel. I don't want to feel. This report was sent to Memorial Sloan Kettering. I hope they pick up on it. If they don't I will be sure to mention it. I have all the pertinent blood work tests coming in a couple of weeks for the thyroid. One of the reports noted that my AST levels were high. Those are related to the thyroid function.

Does this ever end? Of course it does ... on the other side of the grass! WHY WHY WHY

So hoping that SL will be
So hoping that SL will be able to help you Mary. Lots of prayers and hugs to you!


Kylez

StaceyPMD1121

MsGebby said:

I called SLoan Kettering
Finally! I'm too scared NOT TO. After telling my story, the nurse I spoke with said a biopsy is truly needed. I couldn't believe that someone finally agreed with me. I got ALL my reports and doc notes to send to MSK. Well, I was surprised to read in almost every doc note that I was offered VATS and that I declined each time. I'm like, WHATTTTT???!! The first onco doc would say "we will do VATS if you want to" but then she would tell me what could happen (lung collapse and whatnot) and that it is very risky. She would also say her systemic therapy approach not change if it is mets. Her belief was that it would be breast cancer which is highly ER/PR+ and that would be all I need. Well, here it 3 months into taking Arimidex and the nodules keep growing and multiplying. My heart tells me it is NOT mets from breast cancer. 6 nodules have doubled in size and 2 more were found since the last CT scan 1 month ago. What am I to think?

Anyway, I faxed 50 pages to MSK. The gentleman I spoke with there (thoracic surgery department) was so kind. He was doing his level best to keep me from completely falling apart. He said the reports I send him will be scrutinized by the team of doctors who will be in charge of my care. He tried to tell me that he sees this all the time and that it may not be as bad as I think. He feels that I am being proactive and that my call at this time just may bring the best possible news if it this is cancer. He feels I may be Stage 1 because it sounds like I jumped on this so fast. Now I wait for a call from this facility. If I need surgery to resection my lungs, it will be in NYC (i live in NJ). Treatment can be performed in NJ. That facility is 35 minutes away. I think I am jumping the gun talking about surgery and treatment. I honestly hope I need either.

I am such a mess right now.

I want to thank you all for holding me up. I truly feel blessed, Thank You Thank You Thank You.

Please know that once I have more information then the OLD Mary will be back. I function better when I know what I am up against. I am trying to stay positive. My faith is still very strong. It's just that I feel so little ... so weak ... so scared ... at the moment. I didn't think I would break down. I mean, I've been down this road once before. But this is looming so large, it's just unimaginable to me. Please excuse me for sounding so negative. I am not trying to go there.

I am looking forward to the nice weather that will be here for the weekend. I have plans to visit with Dad in PA for Father's Day. I just hope I don't lose it when I am there. He doesn't know and I have no plans to tell him. Not just yet ... hopefully my fears will be for naught. One can hope, right???

Praying for You

My prayers are with you Gebby. I am glad that you got a second opinion. God will give you the strength to get through this crisis. Hold on to your faith and read the Bible to calm you. Try to do something you enjoy to take your mind off things. Come and post and vent often to keep from exploding on the wrong person.

Peace,Blessings,Love & Big Hugs,
Stacey