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Topic: Struggling with Recurrence Fears

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

Meet others concerned about developing a recurrence or metastases.

Posted on: Nov 22, 2019 04:25PM - edited Jul 12, 2020 02:54PM by seastarz

seastarz wrote:

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Nov 22, 2019 04:37PM Moderators wrote:


Welcome to! We're so sorry for the reasons that bring you here, but we're really glad you've found us. You're sure to find our Community and incredible source of advice, information, and support -- we're all here for you!

Fear of recurrence is a very real and very common thing, for sure. You're sure to hear from others soon who can empathize with you and offer some tips to help keep these fears to a minimum.

We look forward to hearing more from you as you navigate the boards. We hope you find some relief soon!

--The Mods

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Nov 22, 2019 04:56PM Euphoriaa wrote:

Hi seastarz, I understand you. I have finished active treatment (rads) in October and I also feel fear, bc has become an obsession for me. It is my last thought before sleeping and the first one upon waking. I have read in these forums that it is a very common situation and it is normalizing a bit over time ... I hope so. I'm taking tamoxifen and I definitely notice that my anxiety and depression have increased considerably. I guess it will be the same with AI. Could the pain in your shoulder be due to rads? I have persistent pain in my radiate side, shoulder / shoulder blade / arm / fingers.

I hope you get well soon

Dx 9/24/2018, IDC, Left, 3cm, Stage IIA, Grade 1, 1/8 nodes, ER+/PR+, HER2- (IHC) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Chemotherapy AC + T (Taxol) Radiation Therapy Whole-breast: Breast, Lymph nodes, Chest wall
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Nov 22, 2019 08:27PM - edited Jul 12, 2020 02:54PM by seastarz

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Nov 22, 2019 08:51PM smc123 wrote:

Seastarz, I can totally relate to your anxiety. You could look into counseling. My treatment center offered free counseling. Good luck.
Dx 2/1/2016, IDC, Left, Grade 3, ER-/PR-, HER2- Chemotherapy 2/23/2016 AC + T (Taxol) Surgery 8/1/2016 Lymph node removal: Underarm/Axillary; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Radiation Therapy 10/4/2016 Breast, Lymph nodes Surgery 4/3/2017 Reconstruction (left): Saline implant; Reconstruction (right): Saline implant
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Nov 22, 2019 11:15PM Beaverntx wrote:

seastarz, wondering about recurrence is very, very normal. A general guideline given by many MOs is if any new ache, pain etc lasts two weeks get it checked out. Doesn't prevent worrying but does help to have the time limit, at least for me.

Diagnosed at age 77-- Oncotype 17, dealing with this bump in the road of life!!🎆 Dx 1/24/2018, IDC, Right, 2cm, Stage IB, Grade 3, 0/9 nodes, ER+/PR+, HER2- (IHC) Dx 1/30/2018, DCIS, Right, <1cm, Stage 0 Surgery 1/30/2018 Lumpectomy: Right; Lymph node removal: Right, Sentinel Radiation Therapy 3/11/2018 Whole-breast: Breast Surgery 6/15/2018 Prophylactic ovary removal Hormonal Therapy 6/19/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Nov 22, 2019 11:27PM wallycat wrote:

Unfortunately, sometimes the further out we are, the more anxious we can become. There's less monitoring and less hands-on-care, so you feel you've fallen through the safety-net of constant vigilance. And we all read the stories of x-years out and having a recurrence, so the worry never goes away, sadly.

I've had shoulder blade pain from exercise or something as simple as sleeping wrong. Best to you.

Dx 4/07 1 month before turning 50; ILC 1.8cm, ER+/PR+, HER2 neg., Stage 1, Grade 2, 0/5 nodes. Onco score 20, Bilateral Mast., tamoxifen 3-1/2 years, arimidex-completed 4/20/2012
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Nov 23, 2019 08:43AM Ingerp wrote:

It’s like after you finish active treatment, you have the brain space to worry about other things. I had these weird butt bone pains a few weeks ago and of course started googling bone mets. However, after a day or two my rational self returned and I realized I was being silly. If you’re getting fearful and can’t shake it, it might be time to talk to someone. However, I also think keeping busy can help. Lots of holiday stuff coming up to distract us, right?

Dx 3/11/2016, DCIS, Left, 6cm+, Stage 0, Grade 3, ER-/PR- Surgery 3/23/2016 Lumpectomy Surgery 4/20/2016 Lumpectomy: Left Radiation Therapy 5/18/2016 Whole-breast: Breast Dx 3/2/2018, IDC, Right, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2+ (FISH) Surgery 3/13/2018 Lumpectomy: Right; Lymph node removal: Sentinel Chemotherapy 5/18/2018 Taxol (paclitaxel) Targeted Therapy 5/18/2018 Herceptin (trastuzumab) Radiation Therapy 8/20/2018 Whole-breast: Breast
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Nov 23, 2019 10:30AM umakemehappy wrote:

Hi Seastarz!

I am a little further along than you but wanted to chime in that I have the EXACT SAME shoulder blade pain you describe. I've googled the heck out of it and am not finding anything (so, good news???) It's barely a pain, more like a bruise or pulled muscle. Everyone always says if you have the pain more than 2 weeks, have it checked out, but my random pains of the last year have all lasted a month or two before finally going away. And each one is of course another sure sign of mets (just in my mind, thus far).

I've just recently found myself really sad (and mad) that I can no longer just have a little headache, or a cough, or a sniffly nose, without fearing death. This is a hard phase, for sure. ; ( Ingerp is right, distraction is the best medicine. On busy days, these thoughts never even cross my mind......

Dx 6/20/2018, DCIS/IDC, Left, <1cm, Stage IA, Grade 2, 0/2 nodes, ER+/PR+, HER2+ Surgery 7/20/2018 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 9/5/2018 Taxol (paclitaxel) Targeted Therapy 9/5/2018 Herceptin (trastuzumab) Radiation Therapy 12/3/2018 Whole-breast: Breast Hormonal Therapy 1/5/2019 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Nov 23, 2019 10:51AM Spookiesmom wrote:

Totally normal feelings. Could also be PTSD. See that a lot around here. You have experienced a trauma, the same as war, or abuse. We all process this differently. Really suggest seeing someone who specializes in this.

Best wishes.

Reoccurrence 3-19. Dx IDC, Stage IIIA, Grade 3
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Nov 23, 2019 07:09PM - edited Jul 12, 2020 02:54PM by seastarz

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Nov 24, 2019 10:24AM - edited Nov 24, 2019 10:25AM by ruthbru

Since I am far out from treatment (and like you was Stage IIA, Grade 3, did chemo, radiation, and took Arimidex), I thought it might be helpful for me to chime in. First of all, what you are going through is totally normal. When you are in treatment you are in a 'fight mode' at all times. It's a whirlwind of shock, harsh treatments, and (for me anyway), you just have to get through it. And suddenly, BOOM, you are done and sent out the door and things are supposed to all go back to normal. Well, they don't. Along with healing physically, you have to heal emotionally, You have to process all you have been through and try to make some sense of it, and maybe figure out how to MAKE something positive come out of it. I once read that however long you are in treatment, it takes that long again to heal physically (I'd say double that time). Emotionally, I think it took me about a year to process the whole thing. Here are some things that helped me move forward: get lots and lots of exercise (which will help with both the physical & emotional healing, plus help manage Arimidex creakiness), keep busy (especially doing fun and/or meaningful things), use this experience to get out of things that you really don't want to do and into things that you've wanted to do that you haven't taken time for in the past, update your wardrobe, hairstyle etc. (if you look good, you really do feel better), take a fun vacation (my niece was getting married and I remember being scared to book plane tickets 6 months out because I was afraid that would be good luck......just book the tickets, it will be liberating. When I would have an ache or pain, I would write it on my calendar for two weeks out, and I would NOT let myself think about it until then (taking a guided relaxation class or buying some meditation CDs can help). I had a lumpectomy so was obsessively checking myself for lumps. I put that on the calendar for once a month & do not poke around looking for trouble until the calendar gives me permission to do so. Make a big purchase, I remember being so nervous buying something expensive (which I needed) because, again would I be jinxing myself. Buy it anyway. This is what I eventually came to realize; I did all the medically advised treatments. I was doing all the things I could do to minimize recurrence chances (exercise, keep the weight down etc.). So it was either going to come back or not (which statistically it shouldn't for either of us). If it didn't, I was wasting a lot of physiological energy for no reason. If it did, I better get out and make as many memories as I could right now!!!! I hope some of my ramblings will help.

"Invisible threads are the strongest ties." Friedrich Nietzsche Dx 2/2007, Stage IIA, Grade 3, 0/11 nodes, ER+/PR-, HER2-
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Nov 24, 2019 03:21PM vlnrph wrote:

I would echo the suggestions to consider a session or two with a counselor, perhaps someone who could also prescribe a short course of meds for anxiety and/or depression. A good support group may help too.

The anti-estrogen effect of our therapy is another complicating factor in regulating mood and the ability to control obsessive tendencies. I did OK on tamoxifen, had poor tolerance of aromatase inhibition and am getting by on fulvestrant injections every four weeks now that I have metastatic disease.

Realize that the same coping mechanisms which got you through early stage treatment will be there if the unlikely scenario of recurrence happens. You will be strong and do what needs to be done!

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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Nov 25, 2019 10:43AM - edited Jul 12, 2020 02:54PM by seastarz

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