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Topic: test results know but waiting to see doctor

Forum: Just Diagnosed With a Recurrence or Metastasis —

Meet others who are just facing the diagnosis of a recurrence of breast cancer or metastatic (advanced) disease. You are NOT alone.

Posted on: Jul 10, 2021 07:25PM

bettysgirl wrote:

I had a PET yesterday because of back pain i had been having. Bone scan only indicated an area of concern in my sacrum. PET says multiple mets. Area with most uptake was sacrum, and L3,4,5

Also femurs, both humerus, sternum and possible node/cyst on liver.

The mind is a powerful thing I guess. I felt relatively normal yesterday with very little pain. Today I hurt. Don't know if it the result of laying on the hard table for a hour with my arms up, or my mind is allowing me to have a pity party today. I am most concerned about what is next and how to go forward. I know that there are long time survivors with bone mets, but if the liver is involved, (and the test said it was inconclusive) the bone mets are moot.

I don' t know what she is going to suggest as a next step. Feeling a little anxious today.

Dx 6/20/2008, IDC, 5cm, Stage IIIA, Grade 3, 2/13 nodes, ER+/PR+, HER2- Surgery 7/15/2008 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right; Prophylactic mastectomy: Left Chemotherapy 9/17/2008 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel) Hormonal Therapy 4/14/2009 Radiation Therapy
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Jul 11, 2021 04:12PM aprilgirl1 wrote:

Bettysgirl, I am sorry you find yourself here and as you know, waiting for the Doctor appt to review scans is just awful! Your doctor may try to biopsy the mets to confirm hormone and her2 status. The cyst in the liver could very well be benign - see what your oncologist has to say about the scan results.

You are right that there are long term survivors with bone mets and liver mets, and treatment that can keep the disease stable or even reduced to no evidence of disease. If you have pain, I have read that some women with bone mets will have local radiation. Most hormone positive. her2 - patients are started on a cdk 4/6 med and a hormone blocking med. I am on Ibrance and Fulvestrant. I have been on this treatment for 19 months and to be honest, feel good. It has been working well and I am thankful. Know you are not alone. In the Stage IV only area you will find a lot of support from others with bone mets etc. and once your oncologist starts you on medication you will find support for that specific treatment, which I have found really helpful to understand any possible side effects etc.

I hope you meet with your oncologist early next week! Let us know how that appt goes and what treatment plan you are starting.

recurrence in lymph nodes (superclavicle/mediastinal)"You can do it like it's a great weight on you, or you can do it like it's part of the dance." Ram Dass Dx 11/7/2008, IDC, Left, 1cm, Stage IB, Grade 2, 0/3 nodes, ER+/PR+, HER2- Dx 11/13/2019, IDC, Left, Stage IV, metastasized to other, ER+/PR+, HER2-
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Jul 11, 2021 04:31PM bcincolorado wrote:

Will keep you in my prayers.

Dx 8/2009, IDC, Left, 5cm, Stage IIA, Grade 1, 0/2 nodes, ER+/PR+, HER2- Surgery 1/7/2010 Lumpectomy: Left; Lymph node removal: Left Hormonal Therapy 1/15/2010 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy 1/30/2016 Femara (letrozole)
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Jul 11, 2021 06:21PM bettysgirl wrote:

Thanks for your responses. Sadly, she was going to be out of town and I don't see her until the 21st. Very long wait indeed. I have thus far not shared the info with anyone but my husband and kids. I don't see telling someone then can't answer anything about what's next. I have a bucket list of medical problems that will complicate treatment. I have a leaky mitral valve that they have been monitoring.

My daughter asked about taking to the grand girls but I asked her to wait until I know more. Just keep the prayers up. I am understandably a little bit down.

Just marked 24 years since my mom died on July 6, surgery anniversary ect .. Big plans for annual family reunion at the lake mid August. Hopefully I will be able to go.

Dx 6/20/2008, IDC, 5cm, Stage IIIA, Grade 3, 2/13 nodes, ER+/PR+, HER2- Surgery 7/15/2008 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right; Prophylactic mastectomy: Left Chemotherapy 9/17/2008 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel) Hormonal Therapy 4/14/2009 Radiation Therapy
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Jul 11, 2021 06:26PM LivinLife wrote:

Just want to send support and gentle hugs bettysgirl.... I can't imagine.....

with expansive comedo necrosis & weak ER/PR Dx 7/2020, DCIS, Left, 2cm, Stage 0, Grade 3, 0/1 nodes, ER+/PR+ Surgery 8/31/2020 Mastectomy: Left; Prophylactic mastectomy: Right
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Jul 11, 2021 06:26PM ShetlandPony wrote:

I think you will be able to go! (You have had your covid vax, right?)

2011 Stage I ILC 1.5cm grade1 ITCs sn Lumpectomy,radiation,tamoxifen. 2014 Stage IV ILC mets breast,liver. TaxolNEAD. Ibrance+letrozole 2yrs. Fas+afinitor nope. XelodaNEAD 2yrs. Eribulin,Doxil nope. SUMMIT FaslodexHerceptinNeratinib for Her2mut NEAD
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Jul 11, 2021 06:51PM ShannySkittles wrote:

Bettysgirl, sending you hugs and positive thoughts. Xxx

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Jul 11, 2021 06:53PM SeeQ wrote:

What ShetlandPony said. It really is a whirlwind of emotion in the beginning. You will start to feel better and more confident when you know your treatment plan. Hang in there!

P.S. I hope the liver thing turns out to be benign. Either way, do NOT confer with Dr. Google about liver mets. There's a lot of outdated information that scared the *** out of me, unnecessarily - treatment has come along way in the last 5-ish years.

Diagnosed de novo Stage IV; numerous liver mets; single small breast tumor identified 4 weeks later Dx 6/2/2020, IDC, 6cm+, Stage IV, metastasized to liver, ER+/PR+, HER2- (IHC) Hormonal Therapy 7/3/2020 Arimidex (anastrozole) Targeted Therapy 7/10/2020 Verzenio
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Jul 12, 2021 12:10AM Txgatata wrote:

I just got my PET results back and I look like a human made out of cookies and cream. I hadn't had a PET since July 2020 because insurance considered me “stable” for 3 years. I find having radiation twice in 3 years a funny definition of stable. That PET a year ago had a couple of areas that were stable but nothing like what I saw today. Report not good either but I too have to wait til the 21st as my doc is out of town to get next steps. When the nurse called to go over results she couldn't tell me definitely if it was just bones and nodes because the were so many. There was some stuff about liver but very vague. And it's true you start to feel worse when you see and read that. But keep your head up because it's all we can do (actually there are many things we can do but keeping your attitude positive really does help.) Will share my 21st DocDay talk. Remember, you aren't alone.

Oncotype Score - 21 Dx 1/11/2011, DCIS, <1cm, Stage 0, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 4/4/2011 Mastectomy: Left, Right; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Dx 3/13/2014, IDC, Right, 1cm, Grade 3, 1/1 nodes, mets, ER+/PR-, HER2- Surgery 4/1/2014 Lumpectomy: Left, Right; Lymph node removal: Right, Sentinel Chemotherapy 5/6/2014 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Chemotherapy 5/28/2014 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Chemotherapy 6/18/2014 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Chemotherapy 7/9/2014 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 7/31/2014 Femara (letrozole) Radiation Therapy 8/20/2014 Breast, Lymph nodes Hormonal Therapy 7/21/2016 Aromasin (exemestane) Dx 7/6/2017, IDC, Right, Stage IV, metastasized to other, ER+, HER2- Hormonal Therapy 8/9/2017 Faslodex (fulvestrant) Targeted Therapy 8/9/2017 Ibrance (palbociclib) Dx 2/2018, IDC, Stage IV, metastasized to bone Radiation Therapy 2/1/2018 External: Lymph nodes, Chest wall
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Jul 12, 2021 06:52AM bettysgirl wrote:

Thanks txgatata. The wait feels like so far away. I have tried to refrain from consulting google. I just do not know which place they will choose to do biopsy to determine hormone/her status. My tests was not conclusive on the liver either but like I said for me liver involvement makes the bone moot. I try not to let my mind go there but my mom had liver Mets from her renal so I know that ballgame. My husband's dad had none mets from prostate so I've seen both sides. My insurance isn't good and last time we had a cancer policy. Too much going on in my mind. We just paid everything off and it pisses me off to only be able to be debt free for 1 month before shtf!. Take care.

Dx 6/20/2008, IDC, 5cm, Stage IIIA, Grade 3, 2/13 nodes, ER+/PR+, HER2- Surgery 7/15/2008 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right; Prophylactic mastectomy: Left Chemotherapy 9/17/2008 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel) Hormonal Therapy 4/14/2009 Radiation Therapy
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Jul 18, 2021 10:47AM bettysgirl wrote:

I am beyond being upset. After I told them I didn't want to say anything until after my appointment I've been put on prayer lists, he apparently told them at church. After I had not said anything at work I had a church member come in Friday all teary eyed telling me how sorry she was. Him and both of my children have already talked to their supervisors about FMLA. I may just bust their bubble Wed. They want FMLA? I'll make sure they need it soon

Dx 6/20/2008, IDC, 5cm, Stage IIIA, Grade 3, 2/13 nodes, ER+/PR+, HER2- Surgery 7/15/2008 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right; Prophylactic mastectomy: Left Chemotherapy 9/17/2008 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel) Hormonal Therapy 4/14/2009 Radiation Therapy
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Jul 18, 2021 02:28PM 2019whatayear wrote:

Bettysgirl. My gosh that is completely unaccetable. I'm sorry this happened. It's your story to tell no one else's. Gah

5/6/2019 IDC 2cm, micromet 1/9 nodes, BRCA2+, ER+, PR+, HER- BMX 6/2019, A/C & Taxol 2019, Radiation, BSO - preventative 2/2020, Letrozole 3/1/2020, Started Lynparza for 1 year preventative on 7/18/2021
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Jul 22, 2021 08:01AM bettysgirl wrote:

The appointment went sort of like I expected it to. She would never commit to say that the spot in the sacrum was mets, just that it was "highly suspicious". I told her I knew she would want to determine hormone status if it was. She said that when faced with both a suspect place in bone or organ you always did the organ first. However, she said at 1.5 cm we would have to see if the interventional radiologist could get a clear path to the biopsy. If not, then she would biopsy sacrum. She even mentioned the possibility of direct treatment to the liver if they would not get a biopsy. SO they are working on the precertification with the insurance and hopefully will be able to schedule the biopsy next week or the week after. The girl that schedules it said she did not expect to be able to call me before Friday with a date. So at least we have a baby step forward. It's a plan anyway. She asked me about pain in my lower back. I told her right now it was minimal and more in the am when i get up. The pain continues to be midline in the back and I told her i did not know if it was coming from the sternum or the liver but that it mimicked the kind of pain I had when I had a gallbladder. All she said was we will see.

She would be a good poker player cause she isn't going to play a hand until she is good and ready!

Dx 6/20/2008, IDC, 5cm, Stage IIIA, Grade 3, 2/13 nodes, ER+/PR+, HER2- Surgery 7/15/2008 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right; Prophylactic mastectomy: Left Chemotherapy 9/17/2008 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel) Hormonal Therapy 4/14/2009 Radiation Therapy
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Jul 22, 2021 08:45AM bettysgirl wrote:

How did your appointment go Txgatata?


Dx 6/20/2008, IDC, 5cm, Stage IIIA, Grade 3, 2/13 nodes, ER+/PR+, HER2- Surgery 7/15/2008 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right; Prophylactic mastectomy: Left Chemotherapy 9/17/2008 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel) Hormonal Therapy 4/14/2009 Radiation Therapy
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Jul 25, 2021 01:05PM MushroomTurtle wrote:

I am so sorry you are living through this and your family are not respecting your wishes that is disappointing. I just got my stage IV diagnosis with liver metastasis. It took me 6 months and 3 tests and them saying that the things on my liver were benign. . My pain in my back and hips turned out to be arthritis!

I felt very sad and upset because coworkers and doctors were all thinking I was faking it.

It a hard pill to swallow when being right means you have stage 14 Cancer.

Keep your head focused on small things take information one small bite at a time. Don’t worry about them. Worry about yourself. You are the most important person.

Hugs,

E

Second go at Breast cancer! This time is for keeps! I had about 5 years of remission . Stage IIV Breast Cancer. Metastasized to my Liver. Diagnosed after feeling sick for 9 months.on . Current treatment. Lupron,, Exemestane., Ibrance.
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Jul 25, 2021 01:57PM bettysgirl wrote:

Thanks so much. So sorry to hear of your dx. My thoughts have been playing ping pong in my head. My emotions are all over the place. I had a dear friend call me just sincerely concerned and I told her the liver biopsy was what we were waiting on. It's just hard that you don't have answers and have to wait. Hoping that they call with a date this week. Take care! (((Hugs)))

Dx 6/20/2008, IDC, 5cm, Stage IIIA, Grade 3, 2/13 nodes, ER+/PR+, HER2- Surgery 7/15/2008 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right; Prophylactic mastectomy: Left Chemotherapy 9/17/2008 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel) Hormonal Therapy 4/14/2009 Radiation Therapy
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Jul 27, 2021 01:15PM bettysgirl wrote:

So I got the call from the onco's office this AM. The biopsy is scheduled for next Tuesday at 9 AM. She was not able to tell me why but the Interventional Radiologist has decided to biopsy the bone. She siad that maybe they would tell me why when they called to talk to me about it.

She also said pathology is taking about 2 weeks to get back. (glad they don't get in a hurry) So they scheduled the follow up with her in late August. I had forgotten how much waiting is involved with this stuff. Hopefully the path results will post to the MyChart and I will not have to wait that long. She did say that if they came back sooner, they would call me to follow up with her sooner. Hopefully with feedback I am getting from others and the "need for a driver" it means drugs are involved!

Dx 6/20/2008, IDC, 5cm, Stage IIIA, Grade 3, 2/13 nodes, ER+/PR+, HER2- Surgery 7/15/2008 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right; Prophylactic mastectomy: Left Chemotherapy 9/17/2008 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel) Hormonal Therapy 4/14/2009 Radiation Therapy

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