Topic: Lots of symptoms and worried

Forum: Not Diagnosed With a Recurrence or Metastases but Concerned — Meet others concerned about developing a recurrence or metastases.

Posted on: May 8, 2022 03:27AM - edited May 8, 2022 04:11AM by ssc110907

Posted on: May 8, 2022 03:27AM - edited May 8, 2022 04:11AM by ssc110907

ssc110907 wrote:

please tell me if I'm over reacting, or under reacting. I tend to under react and don't go the the dr until things are at a breaking point, and really bad.

Short back story...family history of BC, dense breast, 3 benign masses in rt. Breast 3 yrs ago. Was suppose to follow up at 6 months to watch things, and never did because of covid.

About 2 yrs ago I started getting shoulder pain in the rt. Side, but know I didn't have an injury to go with it. Had an xray done, it showed nothing. So they sent me on my way. Pain came and went, came and went. But the last 9 months has been a steady constant pain. Worse at night, feels deep...not muscle/tendon, as it doesn't hurt to touch it. Pain has now moved to my right collarbone, and the upper part of my spine(radiating through my right side scapula area.)

In the last 3 months, I have lost almost 20 pounds, which is unheard of for me. I can NEVER lose weight even when I'm doing everything in my power to do it. This is going down about a pound a week without trying. I have be slightly nauseous for the last 2 months, and less appitite, but am forcing myself to eat as normal as possible. So that's not where the 20 lbs has gone.

I've also been having crazy night sweats for about 3 months. But my thyroid levels are good, and I'm still young for menopause (37). And extreme fatigue for the last year or so.(10-12 hours of sleep at night, plus a 2-3 hour nap during the day...and still exhausted).

Then to top it all off... I found a breast lump about a month ago. It is pretty high up and was out of the area that the mammogram could see. It is below my collar bone, about 1.5 inches below, and maybe 2-3 inches away from my armpit on the same side of all the bone pain. Armpit is also slightly swollen.

When they did the mammogram and ultrasound, they only found other masses on the mammo(which he assumed were cysts, but didn't biopsy). Then with the ultrasound, the tech. And radiologist couldn't find anything where my palpable lump is. It's large enough to be felt by multiple people, and feels like 2 lymph nodes(maybe under the pectoral muscle). And they could even feel it with the ultrasound wand. But nothing showed. The radiologist finally pulled up what he called a tiny little lump of fat under the skin(even though my lump feels deep down). It was so small, he didn't even take pictures of it or measure it. And it only appeared on the screen everyonce in a while while he was trying to show me. A tiny mass he can barely find in the ultrasound just doesn't match up with the 1.5 inch lump we can feel. They also did not scan my swollen armpit. But he said I was young, so come back in a year.

Followed up with my PCP a week later. And he said I should just trust the imaging. But wanted to do basic bloodwork for my other symptoms, and get me in to the ortho for my shoulder pain. (Still haven't got that appointment). My bloodwork came back mostly normal. But my calcium is right at the border (10), my alk.phos. is higher(105), my protein is right at the border (8.1) and my anion gap is right at the border (12). All of these numbers are pretty large jumps from all of my previous bloodwork from over the years.


Wow. Sorry for my book. I guess I just need to hear if I'm being crazy for thinking they could be missing something big that my body is trying to tell me. Or if I'm just overly dramatic, and need to just trust the results and deal with it. I just can't shake the feeling of something not being right with my body.

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May 9, 2022 09:20PM kbl wrote:

please ask for an endoscopy with biopsy. It could be a hernia, but you don’t want to wait. It’s not something to mess around with when you lose that much weight and have appetite changes. I waited six months. Don’t be me

De Novo ILC - No primary found. Mets to full spine, femurs, skull, and stomach. Dx 5/1/2019, ILC, Stage IV, metastasized to bone/other, ER+/PR+, HER2- Targeted Therapy 6/23/2019 Ibrance (palbociclib) Hormonal Therapy 6/24/2019 Femara (letrozole) Chemotherapy 9/27/2021 Other
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May 10, 2022 04:19AM jelson wrote:

Hyperparathyroid causes high calcium level and fatigue amongst other symptoms. I believe levels of the parathyroid hormone are not usually checked. Might be something worth pursuing with your primary doctor. Sorry for all that you are going through - I hope the cause for your symptoms is found quickly and easily corrected.

Dx 4/17/2009, DCIS, <1cm, Stage 0, Grade 3, 0/0 nodes, ER+/PR+
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May 10, 2022 05:02AM rah2464 wrote:

SSC good point about the location of this lump it could be outside the field of a breast MRI. I would have a conversation about imaging strategy with that new, responsive, concerned breast specialist you are going to find. Please let us know how you are getting on.

Dx 5/23/2018, IDC, Left, 1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- Surgery 6/26/2018 Mastectomy; Mastectomy (Left); Mastectomy (Right); Reconstruction (Left): Silicone implant; Reconstruction (Right): Silicone implant Hormonal Therapy 7/26/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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May 13, 2022 11:51PM ssc110907 wrote:

after waiting 2 weeks for my PCP to get back to me on my blood work, and anything else he wanted to check for....nothing. he never reached out after he got the results like he said he would. And never even put in the referral to the ortho. For my shoulder pain like he even wrote in my after care notes. Frustrated!

I mychart messaged him, and he said to just let him know if my symptoms get worse, or my lump gets larger. 😒

So...I called and got myself scheduled for an ortho appointment on my own. And got me scheduled for a second opinion back at Seattle Cancer Care. Hoping one of them can get me some answers!

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May 14, 2022 05:00AM rah2464 wrote:

Keep working at it SSC I know you will get the answers you need. Sorry you have to push.

Dx 5/23/2018, IDC, Left, 1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- Surgery 6/26/2018 Mastectomy; Mastectomy (Left); Mastectomy (Right); Reconstruction (Left): Silicone implant; Reconstruction (Right): Silicone implant Hormonal Therapy 7/26/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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May 14, 2022 09:35PM parakeetsrule wrote:

I just found this thread and wanted to add my voice to the group saying you are doing the right thing to push for answers. I was 37 and people told me for years before that my lump was nothing. It sucks to have to be the one to push but do it. I wish I had known I should have.

Stage 2 at 37, Stage 4 at 41. Cancer is dumb. Cookies are good. Dx 3/21/2017, IDC, Left, Grade 2, ER+/PR-, HER2- Chemotherapy 5/14/2017 AC + T (Taxol) Hormonal Therapy 12/8/2021 Faslodex (fulvestrant) Targeted Therapy 12/13/2021 Piqray (alpelisib) Dx IDC, Other, Stage IV, ER+, HER2- Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery Lymph node removal (Left); Mastectomy (Left) Radiation Therapy Whole breast: Lymph nodes, Chest wall
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May 14, 2022 10:41PM katg wrote:

To all i agree. Get to the cancer center. I went to the City of Hope and for everything they found, they kept looking and ordering tests and keeping me filled in. If the Dr. did not, the PA did. They always send surveys and always ask.

ssc110907- You are doing the right thing. A lump of any size needs a look. When the doctor says they will do it, their team needs to help. If they do not have a team, find that Dr. that does. I checked my insurance with every Dr. that was added to make sure they were in my plan. From my Breast surgeon to my MO, to my gyno to my plastics. All were referred by the original. All read my report and talk to one another. I now right now in May of 2022, that going to the COH in July of 2021 was right.

I agree with what was said earlier. You know your body. If it does not heel, it is not ok.

Take good care of you.

Chemotherapy 8/14/2021 AC + T (Taxol) Hormonal Therapy 1/1/2022 Femara (letrozole) Surgery 2/9/2022 Cryotherapy (Left); Lumpectomy (Left); Lymph node removal (Left): Sentinel, Underarm/Axillary; Mastectomy (Left): Modified Radical, Nipple Sparing, Partial, Radical, Simple, Skin Sparing; Prophylactic mastectomy (Left); Reconstruction (Left): Aesthetic Flat Closure, Fat grafting, Nipple reconstruction, Nipple tattoo, Removal (Left), Tissue Expander Dx IDC, Left, 5cm, Stage IIB, Grade 2, ER+/PR-, HER2+, ISH, IHC
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May 14, 2022 11:51PM ssc110907 wrote:

katg- I wish I would have just gotten back in with the breast center right when I found the lump...instead of all this stress of staying at our local small town hospital. But I think having a bad experience 3 yrs ago with the dr. Telling me I was too young, and I should come back when I'm 40...made me not want to go back. Fingers crossed I end up with a new dr. Who will ACTUALLY be on my side.


Parakeet- so was it your original lump that did turn out to be cancer when they finally dx you? Had they ever biopsies it before? What makes me so irritated with this situation, is the radiologist literally couldn't find anything on the ultrasound. And then looking back in my notes from my pcp at my follow up appointment, he wrote "reviewed mammogram and ultrasound findings, and no mass was found." And yet when I went into the followup appointment I told him my concern was that I have a large palpable lump, and the radiologist couldn't see anything, and I was worried something was getting missed or over looked. He smirked and said "must be a pretty tiny lump if he couldn't find it." I was so flustered, I didn't even have a response. But...he never once felt the lump himself. It's like he just assumed it was all in my head. If my husband can feel it (and gets grossed out by it)...its not in my head.

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May 15, 2022 03:21AM sondraf wrote:

Ive got nothing to add here other than I hate HATE the "too young (in your 30s) it cant be cancer so why are you worried/getting imaging" and "no family history so why are you worried/getting imaging" messaging that has filtered through everywhere. Ive seen this tale repeated a bunch of times on various forums,hell, my own mother said it to me. Logically I believed it. And so you question your judgement or believe what the doctors say, until its very, or too, late.

Just a little fact from the American Cancer Society:

So.... perhaps we should do something about believing younger women when they say something isn't right,especially as their cancers tend to be more aggressive! SEER data shows that new breast diagnoses in the 15-39 yr age group are up 0.5% per year over the last 20 years while the mortality rate is flat.

https://seer.cancer.gov/statistics-network/explore...

Id also argue (though with no proof) that ladies younger than 50 have lived through an era where new types of synthetic ingredients, plastics and packaging, and other potential (or now proven) carcinogens were introduced as markets and products expanded at a rate not known before 1970. Correlation is not causation,I know, and there are a lot of suppositions and unknowns in that statement above I am not going to put the time in to digging out statistics that may or may not exist, but it does make me wonder. At the very least I think messaging needs to change from the blanked Pink Awareness! to something more targeted. "rare under 40" doesn't seem so rare when its 10% of all annual bc diagnoses.

Ok Ill stop my rant now, but keep pushing (and also -- the parathyroid question is a good one too, it may not be breast cancer but possibly a different one or a thyroid issue to be resolved)

"The closer we come to the negative, to death, the more we blossom" - Montgomery Clift Dx 9/27/2019, IDC, Right, 5cm, Stage IV, metastasized to bone, Grade 3, ER+/PR+, HER2- Hormonal Therapy 11/28/2019 Femara (letrozole) Targeted Therapy 11/28/2019 Ibrance (palbociclib) Surgery 11/28/2021 Lymph node removal (Right): Underarm/Axillary; Mastectomy (Right) Targeted Therapy 3/1/2022 translation missing: en.treatments.targeted_therapy.targeted_therapy_medicine.short_options.lynparza
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May 15, 2022 07:30PM parakeetsrule wrote:

It was the same lump all along that turned out to be cancer. They never recommended a mammogram or did any testing on it. They just felt it during my regular exams and said it was nothing/normal/cyst/etc. It wasn't until other obvious symptoms began occurring that they finally sent me for a mammogram.

Stage 2 at 37, Stage 4 at 41. Cancer is dumb. Cookies are good. Dx 3/21/2017, IDC, Left, Grade 2, ER+/PR-, HER2- Chemotherapy 5/14/2017 AC + T (Taxol) Hormonal Therapy 12/8/2021 Faslodex (fulvestrant) Targeted Therapy 12/13/2021 Piqray (alpelisib) Dx IDC, Other, Stage IV, ER+, HER2- Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery Lymph node removal (Left); Mastectomy (Left) Radiation Therapy Whole breast: Lymph nodes, Chest wall

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