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Topic: When does the anxiety stop?

Forum: Second or Third Breast Cancer — For those confronting a new primary diagnosis or undergoing treatment.

Posted on: Sep 4, 2021 03:53PM

doodlegirl1 wrote:

Hi everyone,

I've been on this sight for 10 years now but have never posted anything...my diagnosis's and treatments are in my signature at the bottom. I would first like to say that over the years this forum has given me such comfort through many rough days...all of you are amazing!

I'll try to make it short but I was diagnosed in 2011 with ER/PR+ Her2- stage 1 breast cancer...no lymph node involvement, had lumpectomy and rads and was put on tamoxifen. Oncotype score was 19...at that time it was at the very low end of the gray area so I decided to not do chemo and my oncologist was fine with my decision. Fast forward to August 2019 and after my routine mammo and ultrasound a new mass was found in the same breast, different spot. Biopsy confirmed it was cancer again but this time it was TNBC stage 1 so it was now considered a new primary because 8 years had passed between the diagnosis. There was no lymph node involvement and all scans were good. I started ACT soon after and after finishing it all was sent to an MRI a few weeks before my surgery. MRI showed that the chemo regimen did nothing to the 1.4 cm that I had (I was also told that the tumor had an 80% proliferation rate at the original biopsy)...it was almost like it just froze it in place...didn't get bigger, didn't get smaller. I had my BMX on 2/24/20 right before all the craziness with Covid took place. My breast surgeon who is fantastic was very pleased with the results of the final pathology (1.6 cm node negative) LVI was present though but all in all a good report. When I met with my oncologist a few days after surgery (before the actual lockdown) she suggested that I be put on Xeloda because I didn't get the response from chemo that they were hoping for. She made a comment to my husband and I that "if theoriginal chemo didn't work than I don't see how Xeloda will" it was very disheartening to hear that. I left stunned that she could even say such a thing. Lockdown happened and I started xeloda and during that time would go to the plastic surgeon to have the expanders filled. She was very pleased with the outcome of the surgery as well. I finished xeloda in the fall and then I had my surgery : implant on my good (left) breast and a lattisimus doors flap and implant on my right breast beacause I had already had radiation on this breast with my first diagnosis. All went well with the surgery. I had seen my oncologist one other time since then...I feel like I have PTSD from everything I've been through and I'm terrified to go back to her. I have really hard days when I feel like I'm going to have a breakdown because I keep thinking of all the what if's again. My body already betrayed me twice with the second time being a much more agressive cancer. Every ache or pain that I feel sends me into a whirlwind of "it must be back"

I guess my question is more of a rhetorical one...or maybe I'm just venting because I'm just having a bad day I guess. Anyway thanks for listening...


Dx 4/2011, IDC, Right, 1cm, Stage IB, Grade 2, 0/1 nodes, ER+/PR+, HER2- Dx 8/2019, IDC, Right, 1cm, Stage IB, Grade 3, 0/3 nodes, ER-/PR-, HER2- (FISH) Surgery Reconstruction (left): Silicone implant; Reconstruction (right): Latissimus dorsi flap, Silicone implant Chemotherapy Xeloda (capecitabine) Chemotherapy AC + T (Taxol) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy Whole-breast: Breast Surgery Lumpectomy: Right
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Sep 4, 2021 05:53PM LivinLife wrote:

Hi doodlegirl! I"m so glad you posted after being an active reader for so long. I certainly don't have answers for you and realize you're not looking for answers... I just want to send support and gentle hugs. I can hear how hard all this is for you. Not going back to the oncologist seems like a way of being able to avoid when you're not really avoiding the thoughts and feelings you're having. I don't think she was trying to be hurtful or curt in her response about the Xeloda - just honest and there may have been a better way for her to express that. Hopefully that doesn't happen again.... I'm really glad you posted and hope you'll update us once you've seen your onc again.... Or if there's something that would help for support or encouragement even.....

with expansive comedo necrosis & weak ER/PR Dx 7/2020, DCIS, Left, 2cm, Stage 0, Grade 3, 0/1 nodes, ER+/PR+ Surgery 8/30/2020 Mastectomy: Left; Prophylactic mastectomy: Right
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Sep 4, 2021 08:52PM L8Blmr wrote:

doodlegirl1, like LivinLife, I don't have all the answers you're looking for, but glad you are reaching out. That alone can alleviate some of the anxiety you are feeling. Do you know if there is a therapist/social worker at your cancer center? Hopefully, a professional can assist with the PTSD and allow you to unload your concerns. Also, do you have a close friend or family member you can share your anxiety with when days get overwhelming.

I don't think your MO meant to be offensive, but she was...and sometimes that is hard to get past. Switching to a new MO is not out of the question; I'm a believer in feeling comfortable with your medical team. At the very least, if you stay with your MO, don't be afraid to let her know your vulnerability, especially since this is the second go around on this roller coaster.

Sending you big hugs and some deep breathing exercises so you can have a good night's sleep.

L8Blmr Dx 11/2/2017, IDC: Papillary, Left, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR-, HER2- (FISH) Surgery 12/14/2017 Mastectomy: Left, Right Chemotherapy 1/14/2018 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 4/22/2018 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 4/30/2018 Arimidex (anastrozole)
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Sep 5, 2021 07:20PM doodlegirl1 wrote:

Thank you so much LivinLife and L8Blmr for responding and your kind words. I guess I'm just feeling a little down on myself lately. I do have a tremendous support system with friends and family which helps a lot. My husband is truly my rock and I feel terrible for all the things that I have put him and my children through. I guess that I feel (because I have been diagnosed twice) alone in all of this craziness. My oncologist has suggested for me to speak to someone and I actually did the first time around, but now I feel like I have no one to relate to. I guess I just feel that how would a therapist relate to me when they haven't walked in my shoes. And the crazy thing is I have a degree in psychology! lol I've said that if there was a way to be hypnotized to forget all of this I would. I tend to be a very private person but I'm always willing to help anyone (and have helped many of my friends) who go through this. But again I feel like I can't relate because of the crappy luck that I have in being diagnosed twice.

I feel like I'm on an emotional rollercoaster all the time...I can be fine mentally one minute and then the next I'm spiraling down a rabbit hole of all the what if's the second I feel an ache...it just sucks sometimes.

Thank you both again for listening!

Dx 4/2011, IDC, Right, 1cm, Stage IB, Grade 2, 0/1 nodes, ER+/PR+, HER2- Dx 8/2019, IDC, Right, 1cm, Stage IB, Grade 3, 0/3 nodes, ER-/PR-, HER2- (FISH) Surgery Reconstruction (left): Silicone implant; Reconstruction (right): Latissimus dorsi flap, Silicone implant Chemotherapy Xeloda (capecitabine) Chemotherapy AC + T (Taxol) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy Whole-breast: Breast Surgery Lumpectomy: Right
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Sep 6, 2021 07:44AM LivinLife wrote:

Maybe see if your local hospital or where you're going for treatment (even if these are two different places) offers a group for people with breast cancer. I live in a kind of small area and our local hospital offers one - not sure about during this pandemic though. Lots of places are doing even groups through Zoom.... just thinking about your comments on relating to others, going through the same thing, etc. That is important for many things. Yet if you don't find that a skilled therapist can still be quite helpful in being a safe place to express, having a feedback loop, validation and support, etc. You know these things intellectually....

with expansive comedo necrosis & weak ER/PR Dx 7/2020, DCIS, Left, 2cm, Stage 0, Grade 3, 0/1 nodes, ER+/PR+ Surgery 8/30/2020 Mastectomy: Left; Prophylactic mastectomy: Right
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Oct 21, 2021 07:52PM LuciusMaximus wrote:

I have been "so called cancer free" since June 2019. I really don't know how any oncologist or doctor can actually say that to their patient. I will never believe that and they know that too. I had a double mastectomy and when my breast surgeon said that to me, I told him how would you know that and that's not true. He also fell off of his chair! I had LVI and no one told me that. They said the chemo probably took care of that - then why do I hear about so many cased of breast cancer returning and becoming metastatic? I was diagnosed with ER+ PR+ and DCIS no lymph nodes - 2.5 cm tumor and aggressive according to the genome results. Then I happened to have had a chest x ray and by accident the found multiple nodules in my right lung. They haven't grown in 6 months, but they aren't from an infection or from inflammation. They are just supposedly, so far like a freckle - really? Then why the heck do I have to take CT scans for 2 more years? I'm really getting tired of no one telling me the truth! Also, they wanted me to see a nurse to help with my mental state about all of this and she never had cancer. How does one relate to someone who doesn't know one thing about how we are feeling? Is anyone else going through this frustration and torture? Thanks

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Oct 21, 2021 09:39PM Moderators wrote:

Welcome, LuciusMaximus. We're sorry you find yourself here, but we're glad you've joined us and joined in the conversation, and we hope this community can be source of support for you. Everyone here understands what you're going through, and you are certainly not alone.

The Mods

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Oct 22, 2021 09:33AM anotherNYCGirl wrote:

doodlegirl,

We have a very similar 'history' so I know how you feel.

Hang in there and keep your chin up!

Sending hugs from NYC

Dx 1998, DCIS, Stage 0 Surgery 3/17/1998 Lumpectomy: Left Dx 6/2000, ILC, Stage IA, 0/3 nodes, ER+/PR+, HER2- Surgery 7/10/2000 Lumpectomy: Right; Lymph node removal: Right, Sentinel Chemotherapy 7/31/2000 CMF Hormonal Therapy 2/11/2001 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 2/11/2001 Breast Hormonal Therapy 2/11/2006 Femara (letrozole) Dx 2/2014, ILC, Grade 3, 0/3 nodes, ER-/PR-, HER2- Surgery 3/24/2014 Lymph node removal: Left, Right; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 5/1/2014 AC + T (Taxol) Surgery 11/19/2014 Reconstruction (left); Reconstruction (right) Surgery 1/13/2015 Reconstruction (right): Tissue expander placement Surgery 5/27/2015 Reconstruction (right): Latissimus dorsi flap, Silicone implant Surgery 2/22/2016 Reconstruction (left): Fat grafting, Nipple reconstruction; Reconstruction (right): Fat grafting, Nipple reconstruction

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