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Topic: Scared by Conflicting Info and Seemingly Unnecessary Delays

Forum: Caring for Someone with Breast cancer —

A place to share your struggles and concerns about supporting and caring for a person you love diagnosed with breast cancer with others who understand.

Posted on: Apr 24, 2019 08:22AM

BLMike wrote:

My 62 year old wife was diagnosed with breast cancer twice before (both breasts). Unfortunately, I'm back in this forum. She went into the hospital on Saturday with chest pains. A CAT scan identified nodules throughout both lungs. One doctor said "It's Stage IV cancer. At least you got in early so you can get your affairs in order." Of course, this was devastating. A hospital oncologist finally saw us Sunday and said "We don't know what it is so let's get a lung biopsy and body scan ASAP and see what we're dealing with " Fair enough.

For some unknown reason, they won't order the lung biopsy or body scan until my wife sees her regular oncologist, which isn't scheduled until Friday morning. We've tried repeatedly to expedite this with no success. Of course, the waiting and unknown is excruciating. I've done some research online, and it's hard to feel optimistic. The hospital oncologist couldn't really give us a good answer for what these nodules could be if they aren't tumors. They also took tumor-marker blood work but we don't know the results of that either (again, waiting for her regular oncologist on Friday). I feel completely helpless, and this waiting seem like lunacy). Sorry for the rant.

A member to gather information for my wife Dx 2009, DCIS, Stage 0, ER+/PR+, HER2- Dx 2016, IDC, Stage IA, 0/5 nodes, ER+/PR+, HER2- Dx 4/20/2019, IDC, Stage IV, metastasized to lungs, ER+/PR+, HER2- Dx 10/2020, IDC, Stage IV, metastasized to liver, ER+/PR+, HER2- Chemotherapy Xeloda (capecitabine) Targeted Therapy Piqray (alpelisib) Hormonal Therapy Faslodex (fulvestrant) Surgery Lumpectomy; Lymph node removal: Underarm/Axillary Radiation Therapy Breast Targeted Therapy Ibrance (palbociclib) Hormonal Therapy Femara (letrozole)
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Apr 24, 2019 08:45AM gb2115 wrote:

Sorry for your wife's news... that's really tough. Sounds like she has an appointment in a couple of days? It makes sense that they want her to see her regular oncologist, continuity of care and all that. An appointment less than a week later at a specialist is actually pretty good. I wouldn't worry too much about the delay... honestly if it's stage 4 it's probably been there for a really long time. It doesn't make it easy to wait though.

Anyway, again so sorry. I hope that her appointments and tests go well. And it's ok to rant!

Dx IDC in October 2016, stage 2A, 1.2 cm ER/PR+ Her2-, Grade 2, 1/3 nodes. Mammaprint low risk luminal A, Lumpectomy + radiation + tamoxifen. Age 38 at diagnosis.
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Apr 24, 2019 10:42PM edwards750 wrote:

I’m sorry for your wife’s news too. Waiting is brutal. We truly feel your pain about the anxiety and fear.

I understand about them wanting her to see her MO first. All roads lead to the MO when you have breast cancer and are in the treatment phase plus she has your wife’s records. I know it seems unfair to have to wait when you and your wife are on the brink of freaking out about the results but it’s their protocol.

I had lung nodules show up on a chest X-ray and the PA at the clinic where I went for back pain initially freaked flipping out. She advised me to run not walk to the cancer clinic where I had all my treatments. She did admit it could be scar tissue. I told her I would decide when the radiologist’s report came back. She said he would agree with her. He didn’t. He said chest X-ray was normal. No evidence of any lung issues.

Good luck. Keep us posted.

Diane

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Apr 25, 2019 07:18AM - edited Apr 25, 2019 07:45AM by BLMike

Thanks so much for the responses gb and Diane. I'm not the most patient person to begin with so having to wait to see HER oncologist to even schedule the lung biopsy and body scan just makes no sense to me. Hearing from you both seeing her MO is standard operating procedure helps..........somewhat........I guess. I intellectually know that everyone has to go through the waiting process, but, of course, when it's your loved one and the clock is ticking, it's tough. It feels like the prospects for the rest of our lives rests in the balance tomorrow. Just based on the reaction of the hospital staff (and being told it was Stage IV and to get her affairs in order), it's impossible for me to feel overly optimistic here. Thanks again.


A member to gather information for my wife Dx 2009, DCIS, Stage 0, ER+/PR+, HER2- Dx 2016, IDC, Stage IA, 0/5 nodes, ER+/PR+, HER2- Dx 4/20/2019, IDC, Stage IV, metastasized to lungs, ER+/PR+, HER2- Dx 10/2020, IDC, Stage IV, metastasized to liver, ER+/PR+, HER2- Chemotherapy Xeloda (capecitabine) Targeted Therapy Piqray (alpelisib) Hormonal Therapy Faslodex (fulvestrant) Surgery Lumpectomy; Lymph node removal: Underarm/Axillary Radiation Therapy Breast Targeted Therapy Ibrance (palbociclib) Hormonal Therapy Femara (letrozole)
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Apr 25, 2019 09:22AM gb2115 wrote:

I am not only a cancer patient myself, but I have a close family member that was diagnosed with stage IV breast cancer a couple of years ago and is still hanging in there. I know it's hard to feel optimistic (and no one would expect you to), but know that there are many things they can do to treat stage IV. It's not curable, but sometimes it can be managed for quite awhile. Hopefully that will be the case for her!

Dx IDC in October 2016, stage 2A, 1.2 cm ER/PR+ Her2-, Grade 2, 1/3 nodes. Mammaprint low risk luminal A, Lumpectomy + radiation + tamoxifen. Age 38 at diagnosis.
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Apr 26, 2019 02:43PM edwards750 wrote:

There are countless women who have Stage IV BC on this website who are still doing okay multiple years later. Of course it’s no walk in the park but they haven’t been given an expiration date either. One of the ladies in my support group at church was DX Stage IV almost 3 years ago and is doing well so you never know.

Keep the faith.

Diane


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Apr 26, 2019 02:52PM momoschki wrote:

I feel I have to add here that my sister-in-law, who received at stage IV dx from the get go, is still kicking 20 years later...

ADH dx 3/11 Surgery 3/11/2011 Lumpectomy: Left
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Apr 26, 2019 05:27PM BLMike wrote:

Thank you all for your encouragement. It really does help keep me emotionally grounded. We met with my wife's oncologist today, and the news was about as good as could be expected: liver enzymes were normal, and the blood test to identify tumor markers was negative. Although this doesn't necessarily mean no cancer, it is better than being positive. The oncologist believes the odds of this being cancer is 70%. With the blood test results today, that hasn't gone up so that's good. The fact that she has no other symptoms is also good (especially relative to potential future treatment). The next steps are a lung biopsy to determine what these nodules are and then a variety of body scans to determine if she has cancer anywhere else. They're going to try and get these done next week. It'll then take 7-10 days to get the various results. A long waiting game still with a follow-up with her oncologist to go over all the results of these tests on May 17. Thanks again for good thoughts.

A member to gather information for my wife Dx 2009, DCIS, Stage 0, ER+/PR+, HER2- Dx 2016, IDC, Stage IA, 0/5 nodes, ER+/PR+, HER2- Dx 4/20/2019, IDC, Stage IV, metastasized to lungs, ER+/PR+, HER2- Dx 10/2020, IDC, Stage IV, metastasized to liver, ER+/PR+, HER2- Chemotherapy Xeloda (capecitabine) Targeted Therapy Piqray (alpelisib) Hormonal Therapy Faslodex (fulvestrant) Surgery Lumpectomy; Lymph node removal: Underarm/Axillary Radiation Therapy Breast Targeted Therapy Ibrance (palbociclib) Hormonal Therapy Femara (letrozole)

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