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Topic: Very worried about possible bone mets

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

Meet others concerned about developing a recurrence or metastases.

Posted on: Nov 27, 2018 07:17AM

Esmerelda wrote:

Dear friends,

I've been lurking for a few weeks, after having been gone from this site for several years, trying to just move beyond this and focus on my girls (Originally diagnosed in 2012 - see more info below).

I'm sitting here this early morning, about to get my girls up for school (4 yo and 10 yo), and then I will be driving two hours for an appointment at Univ of Michigan for a clinic appointment. I feel so sad and hopeless. I just thought it was time for me to write and seek support from you dear people. We moved to a new home (same town) in late September, and in the midst of prepping our home to sell (beginning in August, my husband herniated a disc and was essentially out of the packing, moving, renovating, unpacking game until now - he had surgery three weeks ago. I ended up doing it ALL. And subsequently hurt my back as well. Many times over those long weeks, after putting in a new kitchen floor (!) or carrying too many boxes, etc., I could feel the back pain creep in. Fiinally I started pyhsical therapy at my husband's urging- we can't BOTH be down for the count! I've been in physical therapy now for over a month and I'm not really getting any relief.

I know when I tell that story, it absolutely sounds like a simply injury. Only my symptoms have really changed in the subsequent weeks and seem to be worsening. Earlier I might get a day of relief, but now it's everyday. I currently have a nagging, unending burning sensation in my tailbone. I have tingling in the toes on my left foot, and I have an occasional sharp twinge in my mid back vertebrae. I also feel a sensation in my sternum (not pain, really, just discomfort?), and an occasional burning sensation in the upper verterbrae, neck area. Oddly, when I sleep, all of these symptoms go away. I wake up with no pain/discomfort, but as soon as I get up they start in again and are there all day long, often worse by the end of the day. (Or maybe I'm just tired of it all by the end of the day.) Oh, and most recently - no pooping these last three days.

My crazy-worried thoughts tell myself this: I had bone mets all along - and the intense physicality of single-handedly moving our family just broke what what already weakened by bone mets, They were there - with no symptomology - and I overdid it and now vertebrae, coccyx, sacrum (?), are fractured, etc.

Is that a possibility? Can anyone offer me any wisdom or perspective? I don't have any scans scheduled yet. My onco wanted me to start with my PCP and an MRI, because they thought from my story it was injury induced. Well now these injuries don't feel the same - they feel ominous. (Burning tailbone and the rest???). I asked to see my onco first and today is the day. I am terrified. I don't know how to live with this. I don't know how to not live without feeling in utter despair from my girls losing their mother. I don't know that I can do this. Any help is welcomed and so appreciated. Thank you, thank you, thank you. (Currently sobbing at the keyboard.) <3

(Edited to add: since I'm seeing Oncologist today - what do you recommend I say or ask for??)

Jen Dx 3/29/2012, IDC, 2cm, Stage I, Grade 1, 0/3 nodes, ER+/PR+, HER2- Surgery 5/29/2012 Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Hormonal Therapy 7/8/2012
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Dec 6, 2018 11:57AM vlnrph wrote:

From someone with a recent metastatic diagnosis, as you requested: yes, the unknown/waiting for results is harder than having a plan and being able to take action. Even in the worst case scenario, there is no reason to think that you're on your way out of this world anytime soon. My doctor gave me a time line of years, not months.

We have so many good therapies now, it's actually like treating a chronic disease. Lots of us continue our lives with minimal discomfort. It does take a while to cope with the shock and start to adjust to the reality but it is possible. I endured more than one PT session in tears, more from mental distress than pain.

With preteen girls, you are probably pretty young yourself - I wonder whether genetic counseling was ever suggested for you. The presence of a mutation could help determine future options, for instance PARP inhibitors are useful when a BRCA defect exists. Otherwise, the advice to create distractions is a good way to survive!

IDC too! 🎻💊👪🐩 🇫🇮 Rt MX+DIEP 4-2011; ALND 5-2011 d/t micromets; TC X 4; tamoxifen; lymphedema 9-2011; switch to letrozole 3-2014 for 1 yr; bone mets 8-2018: Zometa, rads to spine, Faslodex/Versenio Dx 3/7/2011, ILC, 2cm, Stage IIA, Grade 2, 1/25 nodes, ER+/PR+, HER2-
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Dec 6, 2018 12:02PM InnaB2018 wrote:

Esmeralda, 3 years ago I was happily dancing in Zumba class and made a wrong move somehow. Pain immediately shot down my legs and didn’t get better for 2 months. I took painkillers, went to acupuncture, etc. Nothing helped. An MRI showed a ruptured disk in my lower back that was pressing on my sciatica nerve. I had to have an emergency surgery to correct it and am now 95% pain free.

The point of this story is: not every condition is cancer, but it doesn’t mean it’s less serious just because it’s not cancer. See a good orthopedic surgeon, take a good care of your back. The longer your nerve is inflamed, the worse are the chances for it to completely recover.

As I am writing this, I recalled that I thought that was the worst year of my life. Little did I know what was waiting for me down the road...

Dx 3/26/2018, IDC, Right, 3cm, Stage IIA, Grade 3, 1/18 nodes, ER+/PR+, HER2- Surgery 4/24/2018 Lymph node removal: Right, Sentinel, Underarm/Axillary; Mastectomy: Left, Right; Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 6/1/2018 AC + T (Taxol) Radiation Therapy 10/8/2018 3DCRT: Breast, Lymph nodes, Chest wall Hormonal Therapy Arimidex (anastrozole)
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Dec 6, 2018 03:01PM MeToo14 wrote:

Hi Esmeralda, I'm so sorry you are having to go through this. I too am dealing with the same thing. I hope you have an answer soon. I hope your pain goes away soon.

35 when diagnosed. I had isolated tumor cells in my nodes and was told I am considered node negative, I do not. Dx 7/2014, IDC, 5cm, Stage IIIA, Grade 2, 2/3 nodes, ER+, HER2- Chemotherapy 7/14/2014 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 11/25/2014 Lumpectomy: Right; Lymph node removal: Right, Sentinel Surgery 12/26/2014 Lumpectomy: Right Chemotherapy 1/2/2015 Carboplatin (Paraplatin) Radiation Therapy 4/27/2015 Hormonal Therapy 7/19/2015 Aromasin (exemestane), Zoladex (goserelin)
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Dec 6, 2018 09:39PM bevin wrote:

esmeralda, I am so happy that you're having the tests. Praying all turns out well.

Hugs

Bevin

Age 45, Oncotype 11, Primary Tumor 2.1 cm, smaller satellite tumor nearby Dx 8/8/2010, IDC, 2cm, Stage II, Grade 3, 0/5 nodes, ER+/PR+, HER2- Surgery 8/10/2010 Lumpectomy: Right; Lymph node removal: Right, Sentinel Radiation Therapy 10/10/2010 Breast
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21 hours ago Egads007 wrote:

Esmerelda....Hoping your imaging went well. Any news yet? Thoughts are with you!


"I base all my fashion choices on what doesn't itch" (Gilda Radner) Chemotherapy 3/20/2013 Doxil (doxorubicin), Taxol (paclitaxel) Surgery 8/23/2013 Lumpectomy: Right; Lymph node removal: Right Radiation Therapy 11/1/2013 Whole-breast: Breast, Lymph nodes Dx IDC, 4cm, Stage IIB, 0/2 nodes, ER+/PR- Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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20 hours ago Esmerelda wrote:

Thank you so much for remembering, Egads007. I had to reschedule them to this Thursday night for the MRI, and early Friday morning for the bone scan - because my 4 year old came down with a fever and awful cold! So, I am struggling through the week in anxious waiting. Some days are ok, while others are awful and I’m holding back tears (my ability to be “ok” seems to be heavily influenced by whether the pain is present or acute or not.) Thank you so much for for your support.

Jen Dx 3/29/2012, IDC, 2cm, Stage I, Grade 1, 0/3 nodes, ER+/PR+, HER2- Surgery 5/29/2012 Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Hormonal Therapy 7/8/2012
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12 hours ago grainne wrote:

That is such bad luck! I hope your little one is ok now. What a desperately stressful time for you. Hang in there, girl......we are all behind you.

Just post if you feel overwhelmed....someone will reply. X

grainne Dx 2/1/2016, DCIS/IDC: Tubular, Left, 1cm, Stage IA, Grade 1, 0/3 nodes, ER+/PR+, HER2- Hormonal Therapy 4/15/2016 Arimidex (anastrozole), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)

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