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Stage T1A Grade 3 / Lung nodules & Set backs

hangin
hangin Member Posts: 20
edited January 15 in Stage I Breast Cancer

Hello Friends ~ I was diagnosed in July 2022 & opted for a double mastectomy (without reconstruction) completed Sept 2022. My cancer was discovered diagnostically through a high-risk program here in 🇨🇦. (My mum had BC before 50 & my sister had Usual Ductal Hyperplasia) I did have a few post surgical set backs:

The first) a right side PE a week after surgery diagnosed in the ER with my husband after 18 hours 😟 which we were told was provoked by surgery.

The second) 3 days after the PE diagnosis was taken by ambulance back to the hospital & brought back in to surgery for a left side Hematoma, in order to stop a medial perforator bleed, which we were told was caused by original surgery weeks before. (Please note I am not trying to scare or deter anyone from mastectomies, since there are sometimes although rare complications to any surgical procedure, and "I have NO regrets having my mastectomies") The bleed was stopped & the PE dissipated after a 6 month course of blood thinners.

The third) was being told I had several lung nodules seen in the right & left mid lung zones said to be benign. The largest measured 4.5mm. (My Oncologist said people have them & they show up incidentally when scanned for other reasons & others have them & don't even know it) The Thrombosis Team set me up for a repeat scan for the nodules in Jan 2023 which thankfully showed stability👌. However a brand new nodule appeared measuring 17mm 😳 during that scan, which they believe reflects an inflammatory or infective process. My next scan is June 2023. I truly appreciate anyone taking the time to reach out. 🤗

Update results ~ June 2023 scan said nodules benign stable & that 17mm one that popped up in Jan which was believed to be inflammatory or infective process, is completely resolved! 🙏

Comments

  • vlnrph
    vlnrph Member Posts: 487

    Wow hangin, you have been through more than your share of critical health issues over the past several months. My situation was/is quite different although I did have a couple lung nodules which were scanned periodically to prove stability. Scanxiety is definitely a real phenomenon.

    If it might help you to have greater peace of mind regarding the lack of treatment, perhaps a second (or even third) opinion could be worth pursuing. Depending on where you are in Canada, if you can access an academic university based breast cancer speciality clinic, as opposed to a general oncology group, start there.

    Finally, you’ve proven how strong you are by facing and dealing with all these medical concerns. Best wishes to you & your sister for the future. Should your mom still be alive, genetic counseling and testing for her would be very interesting…

  • hangin
    hangin Member Posts: 20
    edited January 15

    Hello Vlnrph ~ First off, thank so much for responding. You gave me some great insight / advice. Like how Scanxiety is a very real thing. I am happy to hear your lung nodules are stable 👍️ & continue to wish you the best of everything always! "You are a true Heroine". Sadly, Mum passed away years ago (unrelated to her breast cancer) I did end up speaking with two alternate Oncology team members at the hospital on top of my primary Oncologist. They expressed the benefit of adding adjuvant therapy is considerably low in my case. But took it upon myself to seek out feedback from lovely folks like you gracious enough to respond & share. Thank you so very much for doing so. Wishing you the best of everything always! 🤗

  • moderators
    moderators Posts: 7,886

    Hi @hangin,

    It sounds like you have been through the wringer! It makes sense that as things have calmed down (relatively speaking—what I mean is there is less immediate action required on your part in a short span of time, less structure) and you are in a waiting stage that the anxiety and other emotions are coming to the forefront. I am sure June 29th feels quite a ways off.

    Some things that can be helpful to manage the scanxiety, outside of seeking social support, are:

    • Relaxation techniques, like guided meditation. Belleruth Naparstek has some ones that are available for free, such as:
    • Physical activity, such as going for walks
    • Distractions with other activities or hobbies you enjoy

    Separately, we also offer free weekly virtual meet-ups, which you might find to be a supportive venue in addition to our forums here. In case you're interested, you can register here to try them out: https://www.breastcancer.org/community/virtual-meetups#section-in-treatment-for-breast-cancer

    Hope this is helpful!

  • hangin
    hangin Member Posts: 20
    edited July 2023

    Hello Moderators ~ Thank you so much for reaching out. I will definitely check out the relaxation techniques / guided meditation you suggested. BreastCancer.Org and you are so (((awesome!))) 🤗

  • obsolete
    obsolete Member Posts: 333

    Hello Hanging, sorry you've had an eventful experience thus far and hopefully the worst is behind you now. Please focus on R&R and recovery from your PE. Yes, the mod's great meditation suggestion will help you immensely.

    People like us who survived both BC & PE's (I'm almost a 10 year survivor) need to stay away from Tamoxifin other SERM's that can contribute to PE's. Having BC itself increases our thrombosis risks. Beyond your initial 6-months on blood thinners, are you on a daily baby aspirin for maintenance? There are also dietary food items to keep your blood thinner, which is one of your top priorities.

    Some experimental COVID vax also can contribute to thrombosis issues.

    My oncologists had taken me off both Tamoxifin and then later off AI's. I also had survived PE's in both lungs (from car accident injuries) after a difficult lumpectomy and before my eventual bilateral mastectomy. See link below for SE's I shared in addition to those listed in currently active thread entitled: "Neuropsychological Reaction to Aromatase Inhibitors"

    https://community.breastcancer.org/en/discussion/884443/neuropsychological-reaction-to-aromatase-inhibitors#latest

    Many lung nodes are benign as mine was. I also had been monitored for a lung nodule, enlarged hilar node with ground glass opacities. See thread on "CT and Lung Nodules"

    https://community.breastcancer.org/en/discussion/884407/ct-and-lung-nodules#latest

    Was your T1A IDC found to be luminal A or Luminal B? Your pathologist would know, but your BS had given you nice wide margins. The best advice I got was to take it SLOW with baby steps. Best wishes...

    • Multi-Mixed Mucinous + 3cm Invasive Solid Papillary w/ Neuroendocrine features, mixed with T2 IDC Grade-2 + DCIS Grade-3 multi-centric

    PS Sorry I can't seem to activate links

  • hangin
    hangin Member Posts: 20
    edited January 15

    Hello Obsolete ~ First off, thank so much for responding (I am sorry that on top of BC you sustained injuries in a car accident, sending you peace, light & love) And congratulations on 10 years, that is (((awesome))) Not only have you inspired me but you provided me with great insight & info. The doctors mentioned Tamoxifen / SERM's can contribute to PE's, along with the Thrombosis team mentioning that having BC in itself may increases ones thrombosis risks. (To which I admit, I previously had no idea) My IDC was classified as no special type (NST) mixed with small DCIS. In regards to Luminal A or B, I asked about verifying which one I was & was told based on ER/PR positive status is likely A, though my Ki67 was elevated. They wrote in my report that "luminal type & Ki67 % must also be considered in contextually 🤷‍♀️ and wouldn’t benefit from sending out for Oncotype dx, since it would not affect current management". Thank you for taking the time to reach out Obsolete, it means the world to me. Wishing you the best of everything always! 🤗 And many many more wonderful decades ahead.