Join Us

We are 223,107 members in 83 forums discussing 162,827 topics.

Help with Abbreviations

Topic: Seems just a matter of time before I join the Mets conversations

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

Meet others concerned about developing a recurrence or metastases.

Posted on: Mar 2, 2021 07:10PM

FGodmother wrote:

I have been having a sharp, stabbing pain in my left hip which does not feel like bursitis or osteoarthritis. I had Xrays which found no fractures or dislocation. Had an MRI on that left hip today for further investigation. In the meanwhile, saw my new MO on the 17th of Feb where I had several blood draws. She called me very concerned about a trend she saw. CEA tumor marker a year ago was 7 ng/ml (normal is 2.5 for non smoker.) Six months ago the value was 11. Last week’s bloodwork report had the value now at 31.4.

My MO wanted to do a PET scan immediately, but insurance has denied it, after going back and forth with them for five days. So now we wait for insurance approval for a CT scan and nuclear bone scan. I have been absolutely making myself crazy trying to figure out where the cancer is now. I am completely convinced it is back, since every document I have seen says CEA > 20 ng/ml Is a sign that either the tumor wasn’t completely removed or there is recurrence.

Anyone here with bone Mets have a sharp stabbing pain when moving a certain way? I have severe asthma with very small nodules in my lungs at my last CT scan. So it might have reoccurred there. Tom Petty sure had it right. The waiting is the hardest part.

Fairy Godmother

Even Miracles take a little time. Dx 4/22/2016, IDC, Left, <1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- Surgery 5/12/2016 Lumpectomy: Left; Lymph node removal: Left, Sentinel Radiation Therapy 6/16/2016 Whole-breast: Breast Hormonal Therapy 8/3/2016 Arimidex (anastrozole) Dx 3/30/2021, IDC, Left, 4cm, Stage IV, metastasized to bone, Grade 2, 0/3 nodes, ER+/PR+, HER2- (DUAL) Hormonal Therapy 4/2/2021 Femara (letrozole) Targeted Therapy 4/17/2021 Ibrance (palbociclib) Radiation Therapy 4/19/2021
Log in to post a reply

Page 1 of 1 (16 results)

Posts 1 - 16 (16 total)

Log in to post a reply

Mar 2, 2021 07:19PM exbrnxgrl wrote:

Fgodmother,

One thing to bear in mind is that there is no one way that we experience mets. I know this is hard to do but please wait until your imaging/testing is done rather than try to guess what might be happening based on others. FWIW, I had absolutely no pain or symptoms and still had a bone met. Take care.

Bilateral mx 9/7/11 with one step ns reconstruction. As of 11/21/11, 2cm met to upper left femur Dx 7/8/2011, IDC, Left, 4cm, Grade 1, 1/15 nodes, mets, ER+/PR+, HER2- Surgery 9/7/2011 Lymph node removal: Left; Mastectomy: Left, Right; Reconstruction (left); Reconstruction (right) Dx 11/2011, IDC, Left, 4cm, Stage IV, Grade 1, 1/15 nodes, mets, ER+/PR+, HER2- Hormonal Therapy 11/21/2011 Arimidex (anastrozole) Radiation Therapy 11/21/2011 Bone Hormonal Therapy 6/19/2014 Femara (letrozole) Hormonal Therapy Aromasin (exemestane)
Log in to post a reply

Mar 2, 2021 08:16PM kathabus wrote:

The waiting IS the hardest part. Hang in there. It seems that there are benign reasons this could rise. Try to take time for yourself and do things that bring you peace and distraction.

Off topic a bit...what causes your MO to check for a tumor marker? For stage 1a, I was surprised by this. I am a 1b and I was told we won't be doing any tumor marker testing....

Diagnosed at 43 Years Old, Oncotype DX 10 Dx 2/17/2020, IDC, Right, 2cm, Stage IB, Grade 2, 1/1 nodes, ER+/PR+, HER2- Surgery 3/23/2020 Lumpectomy; Lymph node removal Radiation Therapy 5/14/2020 Whole-breast: Breast, Lymph nodes, Chest wall Surgery 7/20/2020 Prophylactic ovary removal Hormonal Therapy 8/20/2020 Femara (letrozole)
Log in to post a reply

Mar 2, 2021 08:39PM exbrnxgrl wrote:

kathabus,

Doctors have different approaches when it comes to tumor markers as they are not reliable for everyone. I am stage IV and have never had tumor markers analyzed. My mo does not put much weight on their reliability. If I have a pain or anything that might be a symptom of progression, she just orders a PET.

Bilateral mx 9/7/11 with one step ns reconstruction. As of 11/21/11, 2cm met to upper left femur Dx 7/8/2011, IDC, Left, 4cm, Grade 1, 1/15 nodes, mets, ER+/PR+, HER2- Surgery 9/7/2011 Lymph node removal: Left; Mastectomy: Left, Right; Reconstruction (left); Reconstruction (right) Dx 11/2011, IDC, Left, 4cm, Stage IV, Grade 1, 1/15 nodes, mets, ER+/PR+, HER2- Hormonal Therapy 11/21/2011 Arimidex (anastrozole) Radiation Therapy 11/21/2011 Bone Hormonal Therapy 6/19/2014 Femara (letrozole) Hormonal Therapy Aromasin (exemestane)
Log in to post a reply

Mar 2, 2021 08:56PM moth wrote:

Fairy Godmother, I hate that you're having to wait and have all this stress. Tumor markers can rise for other reasons - so I'm still hoping yours turns out to be a something else.

I was stage 1a and never had markers done until mets were confirmed by imaging. My MO does them now but they're not terribly sensitive in my case. My 15.3 is just consistently a bit elevated - it wouldn't have given us indication of shrinkage or progressions. I don't think there's robust evidence to use them as a screening thing. From what I've seen it's probably better to stick to the traditional approach - know the symptoms, report anything that doesn't resolve after 2 weeks and get it diagnosed.

I take weekends off

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: Never Tell Me the Odds

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 3/19/2020 Tecentriq (atezolizumab) Chemotherapy 11/26/2020 Abraxane (albumin-bound or nab-paclitaxel) Dx 12/9/2020, IDC, Right, Stage IV, metastasized to lungs, Grade 3, ER+/PR-, HER2- (IHC) Radiation Therapy 12/9/2020 External Hormonal Therapy 12/16/2020 Femara (letrozole) Dx 1/28/2021, IDC, Left, Stage IV, metastasized to bone Radiation Therapy 3/3/2021 External: Bone
Log in to post a reply

Mar 3, 2021 02:30AM AliceBastable wrote:

Hip pain can also be caused by something like a pinched nerve. And a friend who lived with stage 4 cancer for many years told me her MO didn't even mention her tumor markers until they were well into triple digits.

Endometrial cancer 2010, basal cell multiples, breast cancer 2018, kidney cancer 2018. Boring. Hope it stays that way. Dx 5/2018, ILC, Left, 2cm, Stage IA, Grade 1, 1/1 nodes, ER+/PR+, HER2- Surgery 7/10/2018 Lumpectomy: Left; Lymph node removal: Sentinel Surgery 8/7/2018 Radiation Therapy 10/28/2018 Whole-breast: Breast, Lymph nodes
Log in to post a reply

Mar 3, 2021 08:51AM LivinLife wrote:

Hi FGodmother! Just want to send support and validate the difficulty of waiting... Please let us know how your scan goes....

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
Log in to post a reply

Mar 3, 2021 11:13AM FGodmother wrote:

Thank you all who have replied. It means a lot to me that there are others who have been there-done that who care. I am still awaiting scheduling of CT scan and nuclear bone scan. In the meanwhile, I am working, listening to instrumental Christmas music, and watching videos of laughing babies to keep my spirits up. I have a trip to visit my cousins starting the 15th, so I am hoping I will have some results by then. I will keep you all, posted when I know more. Love and hugs to you all!

FG

Even Miracles take a little time. Dx 4/22/2016, IDC, Left, <1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- Surgery 5/12/2016 Lumpectomy: Left; Lymph node removal: Left, Sentinel Radiation Therapy 6/16/2016 Whole-breast: Breast Hormonal Therapy 8/3/2016 Arimidex (anastrozole) Dx 3/30/2021, IDC, Left, 4cm, Stage IV, metastasized to bone, Grade 2, 0/3 nodes, ER+/PR+, HER2- (DUAL) Hormonal Therapy 4/2/2021 Femara (letrozole) Targeted Therapy 4/17/2021 Ibrance (palbociclib) Radiation Therapy 4/19/2021
Log in to post a reply

Mar 5, 2021 05:55AM FGodmother wrote:

Finally scheduled for full body CT this morning and nuclear bone scan this afternoon. Hoping to know something next week.

Even Miracles take a little time. Dx 4/22/2016, IDC, Left, <1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- Surgery 5/12/2016 Lumpectomy: Left; Lymph node removal: Left, Sentinel Radiation Therapy 6/16/2016 Whole-breast: Breast Hormonal Therapy 8/3/2016 Arimidex (anastrozole) Dx 3/30/2021, IDC, Left, 4cm, Stage IV, metastasized to bone, Grade 2, 0/3 nodes, ER+/PR+, HER2- (DUAL) Hormonal Therapy 4/2/2021 Femara (letrozole) Targeted Therapy 4/17/2021 Ibrance (palbociclib) Radiation Therapy 4/19/2021
Log in to post a reply

Mar 5, 2021 03:25PM LivinLife wrote:

I"m so glad you were able to get those scans scheduled and done (by now) so timely!!! Hopefully you don't have too long to wait for results. You have a great plan for coping through all of this.... good self-care as hard as that can be through times like this... We'll wait to hear from you....

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
Log in to post a reply

Mar 9, 2021 03:42PM FGodmother wrote:

I’m hoping some of you will be in my pocket as I see my MO late this afternoon to discuss findings of the MRI, CT scan and nuclear bone scan. Praying it’s bone Mets, but will handle whatever news there is.


Fairy Godmother

Even Miracles take a little time. Dx 4/22/2016, IDC, Left, <1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- Surgery 5/12/2016 Lumpectomy: Left; Lymph node removal: Left, Sentinel Radiation Therapy 6/16/2016 Whole-breast: Breast Hormonal Therapy 8/3/2016 Arimidex (anastrozole) Dx 3/30/2021, IDC, Left, 4cm, Stage IV, metastasized to bone, Grade 2, 0/3 nodes, ER+/PR+, HER2- (DUAL) Hormonal Therapy 4/2/2021 Femara (letrozole) Targeted Therapy 4/17/2021 Ibrance (palbociclib) Radiation Therapy 4/19/2021
Log in to post a reply

Mar 9, 2021 03:52PM sbaaronson wrote:

Sending fortitude FGodmother!

Dx 8/15/2010, IDC, Right, 4cm, Stage IIA, Grade 3, 1/13 nodes, ER+/PR+, HER2- Dx 8/11/2018, IDC, Right, Stage IV, metastasized to bone/lungs, Grade 3, ER+/PR+ Targeted Therapy
Log in to post a reply

Mar 9, 2021 04:04PM moth wrote:

In your pocket!

I take weekends off

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: Never Tell Me the Odds

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 3/19/2020 Tecentriq (atezolizumab) Chemotherapy 11/26/2020 Abraxane (albumin-bound or nab-paclitaxel) Dx 12/9/2020, IDC, Right, Stage IV, metastasized to lungs, Grade 3, ER+/PR-, HER2- (IHC) Radiation Therapy 12/9/2020 External Hormonal Therapy 12/16/2020 Femara (letrozole) Dx 1/28/2021, IDC, Left, Stage IV, metastasized to bone Radiation Therapy 3/3/2021 External: Bone
Log in to post a reply

Mar 9, 2021 09:33PM FGodmother wrote:

The news was about as good as could possibly be when we are talking metastasis. There is a lesion/mass of 9mm on my L1 vertebra, with another about the same size in the right posterior acetabulum (hip socket). The MO wants to send me for a biopsy on the vertebra, and when results are returned on whether it is still hormone +, we will sit down for a discussion of treatment plan. It could have been so much worse!

See you on the bone Mets threads.


Fairy Godmother

Even Miracles take a little time. Dx 4/22/2016, IDC, Left, <1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- Surgery 5/12/2016 Lumpectomy: Left; Lymph node removal: Left, Sentinel Radiation Therapy 6/16/2016 Whole-breast: Breast Hormonal Therapy 8/3/2016 Arimidex (anastrozole) Dx 3/30/2021, IDC, Left, 4cm, Stage IV, metastasized to bone, Grade 2, 0/3 nodes, ER+/PR+, HER2- (DUAL) Hormonal Therapy 4/2/2021 Femara (letrozole) Targeted Therapy 4/17/2021 Ibrance (palbociclib) Radiation Therapy 4/19/2021
Log in to post a reply

Mar 9, 2021 09:36PM 2019whatayear wrote:

Thanks for the update FG Big hugs.

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
Log in to post a reply

Mar 9, 2021 09:40PM moth wrote:

Well I am sorry to hear that but glad it is bone only. Hugs

I take weekends off

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: Never Tell Me the Odds

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 3/19/2020 Tecentriq (atezolizumab) Chemotherapy 11/26/2020 Abraxane (albumin-bound or nab-paclitaxel) Dx 12/9/2020, IDC, Right, Stage IV, metastasized to lungs, Grade 3, ER+/PR-, HER2- (IHC) Radiation Therapy 12/9/2020 External Hormonal Therapy 12/16/2020 Femara (letrozole) Dx 1/28/2021, IDC, Left, Stage IV, metastasized to bone Radiation Therapy 3/3/2021 External: Bone
Log in to post a reply

Mar 10, 2021 05:40PM LivinLife wrote:

Sending gentle hugs and warm energy your way FGodmother!!!

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

Page 1 of 1 (16 results)