Local recurrence after mastectomy and radiation

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Secondtimeround
Secondtimeround Member Posts: 11
edited October 2020 in Just Diagnosed With a Recurrence or Metastasis

Good morning everyone, I want to start out by sending much love to all of you during your individual cancer challenges amongst a global pandemic and all the extra challenges that brings to you and your loved ones and families. (((hugs))). I'm really hoping for shared experiences with local recurrence and associated treatments. I've just been diagnosed with a local recurrence in my chest wall 5yrs post mastectomy & radiation; this one is also grade 2, stage 2 IDC, ER & PR+ but unlike last time, indeterminate HER2 - still waiting on the path report on that. I've just had my CT results and no lymph involvement which I'm taking as great news and labs show my tumor marker #'s are nice & low which I'm also taking as extra confirmation that there is no spread. However, I've got an MRI scheduled this evening and a bone scan tomorrow - aren't these a little superfluous seeing as the CT scan has shown no lymph involvement? I feel so ignorant asking this question! And if anyone has any insight into how (un)likely chemo is for recurrence with no lymph involvement, I'd appreciate the input. I'm imagining at this stage, that there'll be surgery to remove the tumor followed by hormone therapy (prob tamoxifen as it's been mentioned by my onco on numerous occasions) but I admit I'm so shocked at having cancer twice by the time I'm 47 I want to really nuke this damn cancer and make sure that I'm getting all my bases covered! Thank you for reading and/or adding input :)

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  • ctmbsikia
    ctmbsikia Member Posts: 1,095
    edited September 2020

    Sorry to hear. On first cancer you had no hormone therapy being hormone positive? Do you still have your ovaries? Honestly that's a little shocking if you have had no other therapy other than the radiation. By todays' standards that's only done for stage 0 - DCIS, not an invasive cancer.

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  • GraceB1
    GraceB1 Member Posts: 213
    edited September 2020

    I had a local recurrence in Feb and had both the MRI and PET scan done. I think once you've had a recurrence you're more likely to have mets and they want to check that part off immediately. Unfortunately cancer can skip the lymph nodes and head out to other parts first. Good luck!

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  • Secondtimeround
    Secondtimeround Member Posts: 11
    edited September 2020

    Thanks for taking the time to respond - and to confirm, no hormone therapy to date and I'm pre-menopausal. There were many factors which went into not receiving hormone therapy after my original diagnosis which is why I'm certain this time round it'll definitely be a factor. I'm really interested in gaining insight from others on whether or not chemo would also be a factor alongside the hormone therapy treatment.

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  • Secondtimeround
    Secondtimeround Member Posts: 11
    edited September 2020

    Ah ok, got it! Thanks GraceB1 that makes sense as to why the need for further tests in that case!

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  • ctmbsikia
    ctmbsikia Member Posts: 1,095
    edited September 2020

    2ndtime-I believe it is all going to depend on Her2 and lymph node status. Until those are known can't say chemo will be needed. It is still possible it will not be needed if your scans are negative, Her2 is negative, and nodes are negative. Then, yes, hormone therapy may be your preferred treatment. As well as possible ovarian suppression.


    Best wishes to you

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  • Secondtimeround
    Secondtimeround Member Posts: 11
    edited September 2020

    Thanks so much for the input ctmbsikia - much appreciated :)

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  • Krose53
    Krose53 Member Posts: 148
    edited September 2020

    CanI ask you how you were diagnosed the second time since you had a mastectomy and were not getting mammograms?

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  • Secondtimeround
    Secondtimeround Member Posts: 11
    edited September 2020

    Morning Krose53, both times, in 2015 & this month, I was diagnosed following self examination and finding a suspicious growth.

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  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited September 2020

    I had a lump appear under my collar bone exactly 2 years after my bilateral mastectomy. It was quite obvious. MO suggested MRI. I suggested ULS the same day - which gave me the diagnosis. It was called a local recurrence and likely a random microdot that escaped surgery, or colonized before surgery.

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  • buttonsmachine
    buttonsmachine Member Posts: 930
    edited September 2020

    Sorry you are in this situation, it's hard going through a recurrence. In my case I recurred while on Tamoxifen, so I was switched to ovarian suppression and an aromatase inhibitor. Now I've moved on to ovarian suppression and Faslodex. There are many options for hormone therapy.

    Chemo depends so much on your individual cancer features. I did chemo the first and second time around, but different drugs.

    I also did radiation to the local area a second time - this is not done as commonly, but there are some situations where this makes sense.

    Anyway, that's what happened to me. It's tough but hopefully there is no sign of distant metastasis for you. Also, I'd ask your doctors if you can get a baseline PET scan before starting this next round of treatment.

    Hope that helps. Best wishes to you.

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  • Secondtimeround
    Secondtimeround Member Posts: 11
    edited September 2020

    Thank you so much for sharing your experience with me buttonsmachine, I really appreciate the insight & advice. I hope you’re continuing to thrive and be well. X

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  • beep7bop
    beep7bop Member Posts: 130
    edited September 2020

    Had PET on Wednesday got call on Thursday to be in office on Monday at 9:00 am should I be freaking out?? Because I am

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  • Secondtimeround
    Secondtimeround Member Posts: 11
    edited September 2020

    Hi beep7bop, I hope your weekend is going ok despite the wait for you appointment tomorrow. I don’t know the answer to your question I’m afraid but I wanted to wish you all the best for your appointment. I know the waiting can be excruciating & I wish there was something I could say to make it less painful but let us know how you get on

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  • buttonsmachine
    buttonsmachine Member Posts: 930
    edited September 2020

    beep7bop, Don't freak out yet - I have had many things light on on PET scans that turned out not to be cancer. Sometimes, especially when we have had prior surgery or radiation, things light up. Sometimes things even light up elsewhere due to an injury or something. Anyway, just be reassured that it's not always cancer.

    But it's always scary for those of us who have had a local recurrence, because we know the other shoe might drop one day. I deal with it by saving the worrying for when something actually happens, otherwise I just figure it's fine and my doctors will let me know when it's not. Maybe not the best strategy out there, but it works for me. I hope you get good news tomorrow.

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  • TETM28
    TETM28 Member Posts: 5
    edited September 2020

    Hi, I wanted to share with you my experience in case it is helpful! I was diagnosed last year with stage 1B IDC and underwent a bilateral mastectomy. My lymph nodes were negative. My oncotype was 9, so I didn’t require radiation or chemotherapy. This August I noticed a red bump on my skin the same cancer side, by my implant. It turned out to be breast cancer and the only explanation is tumor cell seeding from the original biopsy which were outside of my margins from my mastectomy. I’m still lymph node negative. My doctors would have performed a wide local excision and followed by radiation as my only treatment, followed by tamoxifen or AI and ovarian suppression, but I had to begin chemotherapy because I am 15 weeks pregnant.

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  • Secondtimeround
    Secondtimeround Member Posts: 11
    edited September 2020

    Thank you so much TETM28 for sharing your story and if I may extend all the very best wishes for your treatment going forwards. I hope you tolerate it well and have plenty of support on hand. Take care x

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  • SuperJ13
    SuperJ13 Member Posts: 8
    edited October 2020

    SecondTimer, what did your local recurrence look like? I'm also dealing with a bump under the mastectomy skin. Thank you

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  • Secondtimeround
    Secondtimeround Member Posts: 11
    edited October 2020

    Hi superj13, there was no visible changes to my skin; I just happened to sort of notice a very slight profile as I stretched my arms back in front of the mirror one morning. It was a barely perceptible bump but enough to catch my eye. So, no obvious visible skin changes but when I palpated with my fingers, it felt exactly the same as my first one back in 2015. Moveable, firm spongy lump with a much more solid ‘center’. I’m sorry I can’t be more specific but I do hope you get yours checked out, of for no other reason than peace of mind Good luck :)

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