Join Us

We are 218,169 members in 84 forums discussing 160,928 topics.

Help with Abbreviations

Topic: Bone mets discovered after 7 years

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: Feb 29, 2020 10:49AM

lawgirljenn wrote:

Hi, everyone.

I kind of cannot believe I am writing this post. I think maybe I'm still in shock?

I was diagnosed with Stage IIb invasive lobular carcinoma back in Nov 2012. I had the bilateral mastectomy, lymph node dissection, chemo, and rads. Two weeks ago, my oncologist called to tell me my tumor markers were high, and that I needed to scan. After CT, PET, and bone scans, it has been determined that there are mets to the bones. I have a biopsy on Wednesday to get pathology, and determine treatment.

I have a husband and two kids (10 & 13). They are devastated. I'm trying to hold it together for them. I want to be strong, but it's hard.

I want to believe that we still have at least a few good years left. I'm assuming living in this new reality gets easier with time? Right now I'm reeling, but putting up a good front.

My mets seem to be mostly in the hip, and maybe some in the spine. (I don't have all the info yet). My back has been hurting a lot. Tylenol and heating pads have become my new best friends.

I've read a lot of the posts here over the last couple of weeks, and they have brought me some comfort. I'm looking forward to getting to know you all.

Happy weekend-ing.


Dx 11/1/2012, ILC, 3cm, Stage IIB, Grade 2, 3/16 nodes, ER+/PR+, HER2- Surgery 11/28/2012 Lymph node removal: Left, Right; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 12/12/2012 Lymph node removal: Left, Underarm/Axillary Chemotherapy 1/4/2013 AC + T (Taxol) Radiation Therapy 5/13/2013 Breast, Lymph nodes Hormonal Therapy 8/10/2013 Surgery 10/29/2013 Reconstruction (left); Reconstruction (right)
Log in to post a reply

Page 1 of 1 (8 results)

Posts 1 - 8 (8 total)

Log in to post a reply

Feb 29, 2020 10:59AM moth wrote:

Hi Jenn, sorry you find yourself here in the sucky stage IV club. It's just not fair. Stupid cancer.

there is so much great info & support here tho. Looking forward to getting to know you too :)

Initial dx at 50. Seriously???? “Sometimes the future changes quickly and completely and we’re left with only the choice of what to do next." blog: nevertellmetheodds2017.tumblr.... Dx 12/2017, IDC, Left, 1cm, Stage IA, Grade 3, 0/5 nodes, ER-/PR-, HER2- (IHC) Surgery 12/12/2017 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 2/14/2018 AC + T (Taxol) Radiation Therapy 8/13/2018 Whole-breast: Breast Dx 2/2020, IDC, Stage IV, metastasized to liver/lungs, Grade 3, ER-/PR-, HER2- Chemotherapy 3/18/2020 Taxol (paclitaxel) Immunotherapy 3/18/2020 Tecentriq (atezolizumab)
Log in to post a reply

Feb 29, 2020 11:39AM BevJen wrote:

Hi, Jenn,

Sorry to hear about this. Unfortunately, lobular is sneaky and tends to show up later in recurrence. I, too, am lobular, and I'm now on my third bout with lobular (originally diagnosed 2003; single site metastasis in 2006; liver and bone metastasis in 2019).

You will feel better after you get a plan together with your doctor. Is your doc doing a Foundation One test for genomic stuff as well? that would be good, but that has to be set up before the biopsy because F1 has specific requirements for biopsy sample. Then you can put together a plan.

You can find lots of information on the stage IV threads, and I'd recommend you read them as you are able, especially the bone mets thread. Loads of info on Stage IV threads that you will want to look at, but not all at once!!!

Also, I would recommend getting a second opinion. Many of us go to NCI-designated teaching hospitals for treatment or for second opinions.

Good luck, and let us know what your plan is.

Dx 11/2003, ILC, Left, Stage IIIC, ER+/PR+, HER2- Dx 6/2006, ILC, Stage IV, metastasized to other, ER+ Dx 5/2019, ILC, Stage IV, metastasized to liver, ER+/PR+, HER2- Surgery 7/5/2019 Targeted Therapy 8/1/2019 Ibrance (palbociclib) Radiation Therapy Surgery Lymph node removal: Left, Sentinel; Mastectomy: Left, Right; Reconstruction (left): Pedicled TRAM flap; Reconstruction (right): Pedicled TRAM flap Chemotherapy TAC Hormonal Therapy Faslodex (fulvestrant) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery Lymph node removal; Mastectomy; Reconstruction (left): Pedicled TRAM flap; Reconstruction (right): Pedicled TRAM flap Hormonal Therapy Femara (letrozole)
Log in to post a reply

Feb 29, 2020 12:21PM SondraF wrote:

It gets better - give it maybe three months to get the hang of the drugs and the routine and then, as several posters like to say, you go on living with MBC, not dying from it. The first month or six weeks you may have some additional tests and procedures if the hip mets are worrysome, or you need pallative radiation, but once you get through that stage it settles down, you will have processed the shock and will be moving forward again. Its not to discount the absolute crappiness of the diagnosis, but its more to reassure that this won't necessarily completely take over your life.

Come join us on the Bone Mets thread or in Mel's Living Room (the My Love My Life.. thread) when you are ready - lots of ladies able to give good advice and information.

Dx 9/27/2019, IDC, Right, 5cm, Stage IV, metastasized to bone, Grade 3, ER+/PR+, HER2- Targeted Therapy 11/29/2019 Ibrance (palbociclib) Hormonal Therapy 11/29/2019 Femara (letrozole), Zoladex (goserelin)
Log in to post a reply

Feb 29, 2020 03:10PM DodgersGirl wrote:

LawGirlJenn— so sorry you find yourself here.

I am newly diagnosed, too, and still learning the ropes of my new dx. As others have written, the first few months are busy with scans, tests, and starting a new treatment plan.

I have had palliative rads to back/spine which eased the bone mets pain there and had palliative rads to hips. Right hip still hurts. Just finishing first cycle of Ibrance which I take now with Letrozole. If that becomes your plan, too, make sure to read the Ibrance thread. Several people there are NEAD from Ibrance.

We are all here with you. Ask questions, share your experiences, and vent if necessary.

Dx 3/10/2017, IDC: Mucinous, Right, Stage IIIB, Grade 2, ER+/PR+, HER2- Surgery 9/11/2017 Mastectomy: Right Dx 12/2019, IDC, Right, Stage IV, metastasized to bone Radiation Therapy Whole-breast: Breast, Lymph nodes, Chest wall Chemotherapy AC + T (Taxol) Hormonal Therapy Arimidex (anastrozole)
Log in to post a reply

Mar 1, 2020 06:30AM kkcita wrote:

hi Jenn,

I’m right there with you. Just found out I have bone mets about two weeks ago. I have a 4 year old and 8 year old, and my husband. I want to be there for them as long as possible. I’m starting treatment on Tuesday! Kisqali and letrozole and ovarian suppression.
Just trying to adjust to this new normal, trying to not worry too far down the road yet. I’m lucky to have been in therapy with an amazing psychologist who is experienced in helping cancer patients, so I’m hoping she can help me learn how to cope with this and to make the most of my days instead of wasting them worrying or being too sa, which would be my natural inclination.

Good luck as you get started on your treatment! We can do 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 5/8/2016 Mastectomy: Left; Reconstruction (left): Tissue expander placement Chemotherapy 6/16/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 9/28/2016 External: Lymph nodes, Chest wall Hormonal Therapy 11/30/2016 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 3/2/2020 Femara (letrozole), Zoladex (goserelin) Targeted Therapy 3/2/2020 Kisqali
Log in to post a reply

May 24, 2020 05:04PM GiGiL wrote:

I am experiencing a lot of the same emotions. I have had a CT scan and some lab. I see an oncologist next week. I am a wife, mom and grandma and it hurts me to see the faces of my loved ones as they worry about what is coming up for me. It is all so overwhelming. How are all of you doing

Dx 5/6/2011, IDC, Right, 2cm, Stage IIA, Grade 3, 0/3 nodes, ER+/PR+, HER2-
Log in to post a reply

Aug 9, 2020 06:11PM Hopfull2 wrote:

hi lawgirljenn, im also in the same boat. Just got told last week after mri, ct scan that it’s in my bones. I go for a bone scan Tuesday and biopsy Friday. I’m terrified. I feel depressed I have a 17 and a 6 yr old. Was stage 1 four years ago. And I did everything anyone can possibly do to beat this. But, it’s back. I know how you feel 100%. Like why. Why so soon. Why at my age Let’s keep positive. It seems impossible to do so though Hugs

E🌺37yrs.old/ oncotype score 39 Dx 7/5/2016, DCIS/IDC, Right, <1cm, Stage IA, Grade 2, ER+/PR+, HER2- Surgery 8/8/2016 Mastectomy: Right Surgery 9/15/2016 Mastectomy Chemotherapy 11/10/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 3/23/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 6/9/2017 Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Latissimus dorsi flap, Tissue expander placement Dx 7/2020, Stage IV, metastasized to bone, ER+/PR-, HER2-
Log in to post a reply

Aug 18, 2020 11:53AM KBeee wrote:

I am so sorry you have to deal with this. Hoping you have a treatment plan soon which kicks back those mets nad keeps you stable for years and years.

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)

Page 1 of 1 (8 results)