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Topic: Can Recurrence Symptoms be Mistaken for something else?

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

Meet others concerned about developing a recurrence or metastases.

Posted on: May 13, 2020 01:27AM

CatherineDoug wrote:

Hi everyone. I feel like I am at the end of my rope and I am hoping for a little advice/reassurance. In October 2016 I was diagnosed with stage 1 breast cancer, six months after the death of my husband. Here are my stats.

60 years old.
HER-, ER/PR+
Tumor in right breast 1.8 cm - originally positive margins, went back in and had a second lumpectomy and then the margins were clean
DCIS+ (forgot about that one)
9 Rounds of Taxol (they wanted me to have Adriamyacin but I refused)
15 rounds of radiation
Was declared cancer free that following April. I had three more mammograms that were clean, I was feeling better despite have the usual recovering symptoms, everything was good.

Then about 6 months ago, I started feeling like complete hell. I began have severe shortness of breath that would wake me up in the middle of the night - I have suffered from severe post nasal drip for years but it only seems to have gotten worse - my joints ache, I cannot sleep, I have a slight dry cough and lower back pain. My doctor ordered a lung capacity test and it came back at 80%, and my doc told me that that was within the normal range and she ordered no further testing. And then the covid started and so that went nowhere.

BUT - I have fibromyalgia. I've had for about 15 years and when I did my research I saw that many recurrence symptoms match fibromyalgia flare ups. If I had never had breast cancer I would assume that this was just a fibro flare up that was hanging on. I even wondered for a while if I actually had the coronavirus because of how sick I was back in February but I know that spreads like wildfire and my daughter (who lives with me) never became sick, so I pushed that aside.

I guess my question is after this ramble, should I insist for an MRI to look for metastasis? Where would the cancer spread first if this was it? Or should I give it a week or so and wait for the weather to calm down (It's May and it's 25 degrees in NY state - my fibro beats me up so bad when the weather is all over the place) and see if my symptoms even back out? Any advice would be greatly appreciated. I'm trying not to panic because I have a daughter who is suffering from depression and anxiety (much of it is because of me) and I just cannot leave her right now. I don't even want to think of what this will do to her if my cancer is back.

I apologize for this longwinded ramble.
Thank you, Catherine.

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May 13, 2020 02:48AM - edited May 13, 2020 02:50AM by SondraF

Im awake in a different time zone, but I hope others will chime in here too.

If it were me I would ask for the MRI for peace of mind. Have your past flares lasted this long with similar symptoms? Are they worse now compared to December or February? I know the Covid stuff complicates matters although should highlight that your daughter could have been asymptomatic if you had it at the same time. I don't think mets really travel to anywhere in particular first, its luck of the draw. My draw happened to be the joints I have had problems with for 30 some years, others it may go to the liver or lungs first. But if you get this checked out now, and it does turn out to be mets, then they can get you started on treatment to manage it and help you feel better to enjoy the time with your daughter. If left and it gets worse that could be cut much shorter and more challenging to manage. If it isn't mets then you have a weight off your mind and can get to managing that flare.


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)
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May 15, 2020 03:36PM - edited May 15, 2020 07:19PM by aprilgirl1

Hi Catherine, I agree with Sondra and would want an mri or ct scan. I struggled with some symptoms last fall and was told by general doctors it was a virus. It ended up to be a cancer recurrence in my left superclavical and mediastinal lymph nodes. Discovered by CT Scans of my neck and chest. Once I started treatment my symptoms started clearing up - thankfully! And, it hadn't spread any farther than those nodes (but a LOT of nodes). I had shortness of breath as one of my main symptoms but my pulse oxygen and lungs were clear per the general practitioner which made them really think it was viral. sigh. Edited to add that I had a beautifully clear mammogram during this time the doctors were SURE it was a virus.

If the scans are clear you can focus on the fibromyalgia flare up and have peace of mind. Keep us posted!

recurrence in lymph nodes (superclavicle/mediastinal)"You can do it like it's a great weight on you, or you can do it like it's part of the dance." Ram Dass Dx 11/7/2008, IDC, Left, 1cm, Stage IB, Grade 2, 0/3 nodes, ER+/PR+, HER2- Dx 11/13/2019, IDC, Left, Stage IV, metastasized to other, ER+/PR+, HER2-
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May 15, 2020 06:23PM Togethertolearn wrote:

I have a question - do they have to find cancer in your breast for there to be a reoccurrence? Or can it just show up anywhere? I ask because my mammo just came back fine but I have a large weight loss I'm concerned aboit

Diagnosed 2019, age 45. Dx 4/2019, Right, <1cm, Grade 3, 0/2 nodes, ER+/PR+, HER2-
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May 15, 2020 06:31PM exbrnxgrl wrote:

together to learn,

A recurrence can be local, meaning in the breast or metastatic meaning in a place besides the breast. You can be dx’ed as metastatic without any further breast involvement, but a local recurrence would be in the breast.

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)
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May 15, 2020 10:08PM - edited May 15, 2020 10:10PM by CatherineDoug

Hi everyone, thanks so much for the input.

The farthest I got with my doctor was a chest x-ray, which I am going to get tomorrow and a course of antibiotics (because I am horribly congested). My fibromyalgia flared up so badly last night that my hands were swollen up like balloons and I couldn't drive. Not fun AT ALL. I am not happy with my doctor's treatment, and my daughter has said nothing but good things about her doctor so I think I am going to change over once quarantine is over. (Which ends next week in my state.) I think my planned course of action is to give the antibiotics a try and get the chest x-ray done and see what comes back on that and work my out from there. I will come back with future updates. Thank you!

@aprilgirl1 What was your treatment after your mets were found? And how are you doing now?

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May 16, 2020 12:15AM aprilgirl1 wrote:

Hi Catherine - Good to hear that you are going in tomorrow and getting a scan. I am so sorry about your fibromyalgia flare up/swollen hands. It's good to hear that your daughter really likes her doctor and I also switched my general practitioner after my recent experience where they really ignored my symptoms while knowing my BC history. I will tell you that I had a chest xray and it was clear. For me, the neck CT Scan is what showed the impacted nodes. It took a couple of weeks to get the biopsy, results and confirm the bc dx. I got back in to the oncologist and started Fulvestrant and Ibrance. Honestly, within about 5 days of the Fulvestrant injection I could actually take a deep breath and sleep lying on my back. I had to sleep propped up when I had the strange sensation of not being able to breathe deeply or normally. My "laryngitis" took quite a few months to clear up - which was actually a paralyzed vocal cord (left side) caused by the superclavical lymph node putting pressure on it. I am happy to tell you my voice is almost 100% normal now. That took 4-6 months. My first pet scan after 3 months of F/I showed some nodes had "resolved" and the rest were mm's vs 1.2 cm. I feel great. I hope your swelling goes down, the antibiotics help and your scan is good and gives you peace of mind!

recurrence in lymph nodes (superclavicle/mediastinal)"You can do it like it's a great weight on you, or you can do it like it's part of the dance." Ram Dass Dx 11/7/2008, IDC, Left, 1cm, Stage IB, Grade 2, 0/3 nodes, ER+/PR+, HER2- Dx 11/13/2019, IDC, Left, Stage IV, metastasized to other, ER+/PR+, HER2-
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May 16, 2020 01:20AM Jons_girl wrote:

Catherine thank you for asking this question. I’ve wondered this too. I’m having a lot of joint pain. Just landed officially in menopause. And I’m not sure if this is menopause joints pain or something else. So I will be asking my primary care dr about this.

Let us know how your testing goes. Hugs.

Breast cancer at age 49. Felt tumor. Wasn’t caught on mammo even after feeling tumor. Ultrasound caught my cancer. Dx 6/2017, IDC, Left, <1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2- (FISH) Surgery 7/5/2017 Lumpectomy: Left; Lymph node removal: Sentinel

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