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Topic: possible mets, first PET/CT scan on Wednesday

Forum: Not Diagnosed With a Recurrence or Metastases but Concerned —

Meet others concerned about developing a recurrence or metastases.

Posted on: Feb 17, 2020 04:58PM

kkcita wrote:

I'm so stressed out. I've had a sore knee and back for the last few months, and I did 24 sessions of physical therapy, which kinda helped, but I still had some muscle pain ongoing. Last week, after some increased activity, my knee starting hurting so bad I couldn't walk on it well. I got an x-ray from the orthopedic urgent care, and they wanted an MRI. Crutches helped, and I've been feeling better in my knee. I went in this morning to get the follow up from the knee MRI, and the doctor (a sports medicine doctor), and he says the radiologist said there are "extensive bone marrow signal abnormalities" suggestive of osseous metastases. They didn't really give another option on the differential diagnosis. The ortho dr referred me to my oncologist. The oncologist ordered a PET/CT scan, which is scheduled for Wednesday, in two days. She's supposed to call me later.

we are supposed to go on a big family vacation to Mexico on Saturday. I know that seems stupid to worry about, but it's making me sad to think that I will be ruining the whole vacation for my family.

I have a 4 year old (her birthday was yesterday) and 8 year old. I'm so scared I won't be there for them forever, I really just wanted to get the little one out of college, which means I want 18 years. I suppose it's never enough time. I'm 43 years old.

My original breast cancer was diagnosed just almost 4 years ago when my baby was 6 weeks old, I had a "clogged duct". mastectomy, micromet that was on the outside of one lymph node, 2.5 cm tumor. stage 2B. TC chemo x 4 and radiation. tamoxifen since then. I've never had a PET/CT scan before.

I'm scared, looking for any advice!

oncotype 19. initial dx at age 39, 6 weeks after 2nd child was born. mets dx at age 43. Dx 3/28/2016, IDC, Left, 2cm, Stage IIB, Grade 2, 1/2 nodes, ER+/PR+, HER2- Surgery 5/9/2016 Mastectomy: Left; Reconstruction (left): Tissue expander placement Chemotherapy 6/17/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 9/28/2016 External: Lymph nodes, Chest wall Hormonal Therapy 12/1/2016 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 11/27/2017 Reconstruction (left): Silicone implant Dx 2/19/2020, IDC, Stage IV, metastasized to bone, ER+/PR+, HER2- Hormonal Therapy 3/3/2020 Femara (letrozole), Zoladex (goserelin) Targeted Therapy 3/3/2020 Kisqali
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Feb 17, 2020 08:37PM Cpeachymom wrote:

kk- I’m so sorry you’re going through this bs. It’s so freaking scary for sure, especially with little ones. My little girl is about to turn 4 in a few weeks, I know where you’re coming from. Did she say how long the results will take?

My only advice is to go on your vacation, make those memories. If it turns out to be a false alarm, then you’ll have had a family vacation to remember. If it’s mets, you’ll still want those good memories.

I will be holding you in my thoughts.


39 at Dx. Fate whispers to the warrior, 'You can not withstand the storm.' The warrior whispers back, 'I am the storm.' Dx 6/21/2017, IDC, Right, 4cm, Stage IIB, Grade 1, 1/3 nodes, ER+/PR+, HER2- Surgery 7/4/2017 Lymph node removal: Sentinel; Mastectomy: Right Hormonal Therapy 9/10/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 9/17/2017 Lymph nodes, Chest wall Surgery 10/9/2018 Reconstruction (right): Tissue expander placement Surgery 3/24/2019 Reconstruction (right): Saline implant Hormonal Therapy Zoladex (goserelin)
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Feb 17, 2020 08:46PM MinusTwo wrote:

I agree - take the vacation. A week really won't change your life-span, but will change the memories you'll have for a life time.

2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014
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Feb 17, 2020 08:50PM melmcbee wrote:

I agree. I was diagnosed with mets right before Christmas. We waited till after the holidays to do anything. It takes time to get tests and then they usually send that to foundation one for genetic whatever. It helps show what treatments will work. Enjoy and make memories. Gentle hug

Melanie Dx 6/24/2012, ILC, 2cm, Stage IIIA, Grade 2, 8/15 nodes, ER+/PR+, HER2- Surgery 7/9/2012 Lymph node removal: Right, Sentinel; Mastectomy: Left, Right Surgery 8/9/2012 Lymph node removal: Right, Underarm/Axillary Chemotherapy 8/23/2012 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 1/9/2013 Breast, Lymph nodes Surgery 5/30/2013 Reconstruction (left); Reconstruction (right) Surgery 12/4/2013 Reconstruction (right) Dx 3/29/2017, ILC, Stage IV, metastasized to bone, ER+/PR- Dx 11/19/2019, ILC, Stage IV, metastasized to other, ER-/PR+, HER2- (IHC) Chemotherapy 8/19/2020 Abraxane (albumin-bound or nab-paclitaxel) Immunotherapy Tecentriq (atezolizumab) Hormonal Therapy Faslodex (fulvestrant) Chemotherapy Xeloda (capecitabine)
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Feb 17, 2020 08:55PM kkcita wrote:

thanks for the reply. I talked to my oncologist and she said we should know results by Thursday afternoon. She also said that the radiology report was not a definite thing, and that previous chemo treatment can cause the same bone marrow appearance on MRI, so it could be just a sore knee and nothing else. She said it doesn’t sound like the typical story she hears about mets. So, I have a glimmer of hope. If the PET/CT is negative, then it’s nothing, just a sore knee with weird looking bone marrow. If it’s positive, then I will get a biopsy and go from there. I’m trying to not be too optimistic.

She also told me go to go Mexico, one week won’t make a difference. And she prescribed me some Ativan to help me chill out. I need to step up the YOLOing and have try to have as much fun as possible. I was all about it right after my diagnosis, but kinda let it slide lately, getting too worried about dumb things that aren’t important.

thanks again, I’ll take any thoughts and prayers!!!

oncotype 19. initial dx at age 39, 6 weeks after 2nd child was born. mets dx at age 43. Dx 3/28/2016, IDC, Left, 2cm, Stage IIB, Grade 2, 1/2 nodes, ER+/PR+, HER2- Surgery 5/9/2016 Mastectomy: Left; Reconstruction (left): Tissue expander placement Chemotherapy 6/17/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 9/28/2016 External: Lymph nodes, Chest wall Hormonal Therapy 12/1/2016 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 11/27/2017 Reconstruction (left): Silicone implant Dx 2/19/2020, IDC, Stage IV, metastasized to bone, ER+/PR+, HER2- Hormonal Therapy 3/3/2020 Femara (letrozole), Zoladex (goserelin) Targeted Therapy 3/3/2020 Kisqali
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Feb 19, 2020 04:57PM kkcita wrote:

Hey, I got my inital PET/CT scan results already. Bone mets throughout my body. nowhere else, though, so that seems better. sigh. so long, glimmer of hope.

Next step is bone biopsy tomorrow or Friday, then start new treatment on March 2, after I'm back from my trip.

this is a weird feeling! I know there are many treatments to try, and hopefully many years to go. I'm not crying unless I think about my kids, and how rough it's going to be on them. that's what makes me the saddest right now.

oncotype 19. initial dx at age 39, 6 weeks after 2nd child was born. mets dx at age 43. Dx 3/28/2016, IDC, Left, 2cm, Stage IIB, Grade 2, 1/2 nodes, ER+/PR+, HER2- Surgery 5/9/2016 Mastectomy: Left; Reconstruction (left): Tissue expander placement Chemotherapy 6/17/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 9/28/2016 External: Lymph nodes, Chest wall Hormonal Therapy 12/1/2016 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 11/27/2017 Reconstruction (left): Silicone implant Dx 2/19/2020, IDC, Stage IV, metastasized to bone, ER+/PR+, HER2- Hormonal Therapy 3/3/2020 Femara (letrozole), Zoladex (goserelin) Targeted Therapy 3/3/2020 Kisqali
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Feb 19, 2020 05:03PM AliceBastable wrote:

Hugs to you. Enjoy that trip with your family!

Endometrial cancer 2010, basal cell multiples, breast cancer 2018, kidney cancer 2018. Cancer's a bitch, but I'm a bigger one with more practice. Dx 5/2018, ILC/IDC, Left, 2cm, Stage IA, Grade 2, 1/1 nodes, ER+/PR+, HER2- Surgery 7/11/2018 Lumpectomy: Left; Lymph node removal: Sentinel Surgery 8/8/2018 Radiation Therapy 10/29/2018 Whole-breast: Breast, Lymph nodes
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Feb 19, 2020 05:36PM MinusTwo wrote:

Sorry about the diagnosis. Hope you can put it 'away' and enjoy your vacation. It will probably be easier if you don't tell everyone until you're back. That way it won't dominate every conversation & you can truly hang out.

2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014
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Feb 19, 2020 06:04PM kkcita wrote:

my parents already know, but we are otherwise keeping it on the downlow for now. I’m not going to tell my brother and SIL yet. Not until after the trip. They are all coming with us.
My SIL is one of my best friends - her mom died about one year ago of pancreatic cancer, so she’s still not over that.

I’m going to try my best to focus on the present and be in the moment and not try to speculate more than one step down the road

Thanks for the replies. It’s nice to have people to talk to about this.

oncotype 19. initial dx at age 39, 6 weeks after 2nd child was born. mets dx at age 43. Dx 3/28/2016, IDC, Left, 2cm, Stage IIB, Grade 2, 1/2 nodes, ER+/PR+, HER2- Surgery 5/9/2016 Mastectomy: Left; Reconstruction (left): Tissue expander placement Chemotherapy 6/17/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 9/28/2016 External: Lymph nodes, Chest wall Hormonal Therapy 12/1/2016 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 11/27/2017 Reconstruction (left): Silicone implant Dx 2/19/2020, IDC, Stage IV, metastasized to bone, ER+/PR+, HER2- Hormonal Therapy 3/3/2020 Femara (letrozole), Zoladex (goserelin) Targeted Therapy 3/3/2020 Kisqali
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Feb 19, 2020 07:28PM Rambros wrote:

Big hugs...I hope you are able to have an amazing time on your vacation and enjoy that time with your family & little ones. And then you’ll be ready to start the next phase and get your new treatment plan. I wish you all the best.

Dx 10/8/2014, IDC, Left, 3cm, Stage IIB, Grade 3, 1/10 nodes, ER+/PR+, HER2- (FISH) Surgery 11/17/2014 Mastectomy: Left; Prophylactic mastectomy: Right Chemotherapy 1/6/2015 AC + T (Taxol) Hormonal Therapy Femara (letrozole) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone), Zoladex (goserelin) Surgery Prophylactic ovary removal Radiation Therapy Lymph nodes, Chest wall
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Feb 19, 2020 09:15PM Cpeachymom wrote:

kk- very sad to hear this. Take time to be sad, angry, whatever. And take time to relax and have fun. I hope it responds to treatment and you have many years to make good memories.

39 at Dx. Fate whispers to the warrior, 'You can not withstand the storm.' The warrior whispers back, 'I am the storm.' Dx 6/21/2017, IDC, Right, 4cm, Stage IIB, Grade 1, 1/3 nodes, ER+/PR+, HER2- Surgery 7/4/2017 Lymph node removal: Sentinel; Mastectomy: Right Hormonal Therapy 9/10/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 9/17/2017 Lymph nodes, Chest wall Surgery 10/9/2018 Reconstruction (right): Tissue expander placement Surgery 3/24/2019 Reconstruction (right): Saline implant Hormonal Therapy Zoladex (goserelin)
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Feb 20, 2020 02:08AM Falconer wrote:

kkcita, holding you and your family in the light. ❤️

Strong is the new strong. Dx at 45. Onco 16. Monthly Lupron shots Nov. 2016-December 2017 Dx 7/2016, IDC, Left, 1cm, Stage IB, Grade 2, 0/3 nodes, ER+/PR+, HER2- Dx 7/2016, DCIS, Left, 5cm, Stage 0, Grade 3, 0/3 nodes, ER+/PR+, HER2- Surgery 5/29/2017 Reconstruction (left): DIEP flap Surgery Lymph node removal: Sentinel; Mastectomy: Left Radiation Therapy Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy Aromasin (exemestane), Femara (letrozole), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Feb 20, 2020 02:43AM SondraF wrote:

kkcita - when you feel ready, come join us on the Bone Mets thread. Lots of ladies over there doing real well on the Ibrance/letrozole combo, and a few way out in the 4+ year range on their first line of treatment. In the meantime, enjoy your vacation and the sun!

Dx 9/27/2019, IDC, Right, 5cm, Stage IV, metastasized to bone, Grade 3, ER+/PR+, HER2- Targeted Therapy 11/28/2019 Ibrance (palbociclib) Hormonal Therapy 11/28/2019 Femara (letrozole), Zoladex (goserelin)
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Feb 21, 2020 03:20PM KBeee wrote:

I am so very sorry you are dealing with this. Take that trip and build those memories. Hoping when you return your team has a treatment plan that will kick this back and get you to NED.

Karen. Dx 8/5/2013, IDC, Right, 1cm, Grade 2, 0/1 nodes, ER+/PR+, HER2- (IHC) Surgery 8/26/2013 Mastectomy: Left, Right Chemotherapy 9/20/2013 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 12/12/2013 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 1/23/2014 Reconstruction (left); Reconstruction (right) Surgery 1/29/2015 Lumpectomy: Right Dx 2/2/2015, IDC, Right, 1cm, Grade 2, 0/0 nodes, ER+/PR-, HER2- (FISH) Dx 2/25/2015, IDC, Right, 1cm, Grade 3, 0/13 nodes, ER+/PR-, HER2- (IHC) Surgery 2/25/2015 Lumpectomy: Right; Lymph node removal: Right, Sentinel, Underarm/Axillary; Prophylactic ovary removal Chemotherapy 3/31/2015 AC + T (Taxol) Radiation Therapy 8/25/2015 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy Femara (letrozole)
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Feb 21, 2020 03:57PM kkcita wrote:

so, biopsy done. It wasn't too hard, I guess. If everything stays the same (er+), I will be starting Kisqali 600 mg with letrozole, that injection to induce menopause, and also zometa for bone strengthening. that's the plan. prescriptions are already ordered. Dr appt on March 3 to get everything started. that's in 11 days.

now, I just have to finish packing for mexico!

thanks for the support.

oncotype 19. initial dx at age 39, 6 weeks after 2nd child was born. mets dx at age 43. Dx 3/28/2016, IDC, Left, 2cm, Stage IIB, Grade 2, 1/2 nodes, ER+/PR+, HER2- Surgery 5/9/2016 Mastectomy: Left; Reconstruction (left): Tissue expander placement Chemotherapy 6/17/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 9/28/2016 External: Lymph nodes, Chest wall Hormonal Therapy 12/1/2016 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 11/27/2017 Reconstruction (left): Silicone implant Dx 2/19/2020, IDC, Stage IV, metastasized to bone, ER+/PR+, HER2- Hormonal Therapy 3/3/2020 Femara (letrozole), Zoladex (goserelin) Targeted Therapy 3/3/2020 Kisqali
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Feb 21, 2020 04:04PM Candilea wrote:

kkcita,

I'm sorry this has happened to you. I'm glad you have a plan in place, and I really hope you are able to enjoy some sun and family time. Then, you get back and get started with the treatment...keep going.

Dx'd at 46 with stage IIA. Pathology after bmx revealed 11 cm tumor (multifocal, multicentric, lobular in presentation instead of ductal). Still stage IIA on the new staging system, but locally advanced. Sigh. Dx 4/19/2019, IDC, Right, 2cm, Stage IIA, Grade 2, ER+/PR+, HER2- (IHC) Chemotherapy 5/2/2019 AC + T (Taxol) Surgery 9/4/2019 Lymph node removal: Sentinel, Underarm/Axillary; Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Dx 9/6/2019, IDC, Right, 6cm+, Stage IIIA, Grade 2, 7/16 nodes, ER+/PR+, HER2- (IHC) Radiation Therapy 11/16/2019 Whole-breast: Breast, Lymph nodes, Chest wall Surgery 11/21/2019 Prophylactic ovary removal Hormonal Therapy 12/16/2019 Aromasin (exemestane)
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Feb 21, 2020 04:05PM 2019whatayear wrote:

big hugs I hope you have a wonderful trip

IDC 2 cm micromets 1 node 8 more removed. BMX 6/24, A/C then Taxol 7/25, 25 rads 1/6/2020 No reconstruction BRCA2 - BSO 2/19 all clear/ starting AI on 3/1/2020
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Mar 3, 2020 09:14PM kkcita wrote:

hi all,

We had a great trip! Such a good distraction from cancer, I could forget about it for a little while and just enjoy my family and warm weather. I actually cried when we had to pack up because I just wanted to stay in fantasy denial land a little bit longer. But here I am, about to take my first doses of letrozole and Kisqali. Gotta take care of business.

oncotype 19. initial dx at age 39, 6 weeks after 2nd child was born. mets dx at age 43. Dx 3/28/2016, IDC, Left, 2cm, Stage IIB, Grade 2, 1/2 nodes, ER+/PR+, HER2- Surgery 5/9/2016 Mastectomy: Left; Reconstruction (left): Tissue expander placement Chemotherapy 6/17/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 9/28/2016 External: Lymph nodes, Chest wall Hormonal Therapy 12/1/2016 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 11/27/2017 Reconstruction (left): Silicone implant Dx 2/19/2020, IDC, Stage IV, metastasized to bone, ER+/PR+, HER2- Hormonal Therapy 3/3/2020 Femara (letrozole), Zoladex (goserelin) Targeted Therapy 3/3/2020 Kisqali
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Mar 5, 2020 05:32PM KBeee wrote:

Glad you had a great trip! Wishing you maximum cancer killing and minimal side effects!

Karen. Dx 8/5/2013, IDC, Right, 1cm, Grade 2, 0/1 nodes, ER+/PR+, HER2- (IHC) Surgery 8/26/2013 Mastectomy: Left, Right Chemotherapy 9/20/2013 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 12/12/2013 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 1/23/2014 Reconstruction (left); Reconstruction (right) Surgery 1/29/2015 Lumpectomy: Right Dx 2/2/2015, IDC, Right, 1cm, Grade 2, 0/0 nodes, ER+/PR-, HER2- (FISH) Dx 2/25/2015, IDC, Right, 1cm, Grade 3, 0/13 nodes, ER+/PR-, HER2- (IHC) Surgery 2/25/2015 Lumpectomy: Right; Lymph node removal: Right, Sentinel, Underarm/Axillary; Prophylactic ovary removal Chemotherapy 3/31/2015 AC + T (Taxol) Radiation Therapy 8/25/2015 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy Femara (letrozole)
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Mar 9, 2020 11:18PM - edited Mar 9, 2020 11:19PM by Mamasha

just wanted to send love

Dx 12/2016, IDC, Right, <1cm, 0/3 nodes, ER+/PR+, HER2- Surgery 1/4/2017 Lumpectomy: Right Radiation Therapy 2/6/2017
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May 23, 2020 01:23AM Meghope611 wrote:

just wanted to say I’m so sorry for your diagnosis. My younger daughter just turned four so your story really hit me. I will be praying for you and your family. <

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