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Recurrence after mastectomy

mavericksmom
mavericksmom Member Posts: 1,047

I had breast cancer three times. Each time I was told it was unlikely I would ever get breast cancer again.

I had two lumpectomies, chemo and radiation on left breast in 2003 (IDC) In December 2018 I was diagnosed with ILC in same breast. Treated with mastectomy. I stayed on AI for 6 months then quit for multiple reasons.

August of 2022 I had IDCI w/microinvasion and very small amount of IDC in right breast, treated with right mastectomy and back on Letrozole, which I hope to stay on for as long as my oncologist recommends.

My question is how do women who get recurrences in their breast area, chest wall, find out they have breast cancer again. I have no peace of mind and feel that I will get breast cancer again at some point in time. I don't really know what the early symptoms are other than lumps along the chest wall.

I will see both my oncologist and breast surgeon several times a year for the next few years but would really like to know how they will even be able to tell if cancer returns or not.

Comments

  • mvspaulding
    mvspaulding Member Posts: 163
    edited March 2023

    I too had a mastectomy in 2015. Completed chemo and 6 years of hormone therapy only to have a recurrence in Aug 2022. I felt the lump myself in about the same area as my first. In the little bit of breast tissue that was left over after my double mastectomy. I just figured I am that unlucky. But not unlucky enough to have had it spread to other parts of my body. But like you now I will always be afraid of it coming back or spre

  • spookiesmom
    spookiesmom Member Posts: 8,149
    edited March 2023

    I had bmx in 2012. RO at the time said if it came back, it would be on the scar in the cancer side. Wrong!! 7 years later I found a pea size lump in the nodes on the other side. I’ve been clean for 3 years, not on any meds. I see MO every 3 months, have yearly PET/ct. Am waiting for another reoccurrence, have always been told I’m high risk. If it happens, I’ll deal. If not, yay me. I’m not going to change my life in fear of it. You don’t know you’re free from cancer until you die from something else

  • mavericksmom
    mavericksmom Member Posts: 1,047
    edited March 2023

    spookiesmom, THANK YOU!!!! That was the information I was looking for and I feel the same about life after breast cancer. I do feel I will get it again, but like you, if it happens I will deal with it. I am sorry you had a recurrence, but thankful for the advice.

    lillyishere, I appreciate your clarification. You are right, the "fool me once saying" doesn't really apply to most breast cancer survivors, but my former breast surgeon at a very well known cancer hospital in Philadelphia lied to me, so I feel it applies to me.

    My past "breast teams" are history, and I have moved on. I am very happy with my current team and I trust them 100%, but I wanted to know what to look for as far as recurrence is concerned so I can at least feel I am being proactive. For me, having breast cancer three times felt like having breast cancer for the first time, three times!


  • spookiesmom
    spookiesmom Member Posts: 8,149
    edited March 2023

    Maverick I forgot to add, go ahead and retire, get that puppy ENJOY LIF

  • dory123
    dory123 Member Posts: 8

    Good evening all (well, it's evening here in England, but may not be where you are so good everything just to include everybody).

    I hear you all re: not trusting our bodies. I just found out two days ago that the breast cancer has returned for a third time in the same breast - well, there is actually no breast as I had a full mastectomy in February 2022! Not that is a one special hat trick! Classic overachiever in all areas of life :-) . This news is so new and I have no idea where we go from here. I have a bone scan and an urgent C/T scan planned. I've already had rads (at first diagnosis and post lumpectomy in 2014. tamoxifen currently (and post 1st diagnosis). Only my husband a three close friends who have all had breast cancer, know right now. Not the sort of news I'd share just before Christmas.

    Sending a big hug to anybody struggling with this right now. This little blighter just doesn't give up sometimes does it? I feel as though it;'s toying with me.

  • katg
    katg Member Posts: 206

    Sometimes I read around to see what women have been going through. I am not sure if your post is this year or last year. Whatever year it is surely a crap thing to happen. Not once, twice, but three times. I know they got clear margins on my, dbl mastectomy and chemo, Lynparza, Herceptin. Perjeta and Letrozole for many more years. It is scary to think my chest wall could be the place and how would i know?

    dory123- I hope this was last year and you have the news and have walked through the treatments. Sending prayers and hugs.

  • gailmary
    gailmary Member Posts: 417

    I made the mistake of thinking if cancer came back it would be a recurrence (in the breast again). That isn't always the case. If you experience pain anywhere above the knees that does not quit, tell your oncologist. He will likely order some scans. Good luck.

  • mandy23
    mandy23 Member Posts: 92

    Hi @dory123 -

    Really sorry to hear you are going through this for a THIRD time. Yuck! And of course….it has to be during the holidays….I "hear" you. I was diagnosed a 2nd time about a year ago and my 1st dx (2003) was just before Christmas. It really adds to the 'punch' of it all doesn't it?

    I am sure you are going through the shock of it all and now that the weekend is over, hopefully you can get to your appointments and dr visits and make a plan. I think once you have a plan, it makes you feel a bit more in control.

    Sending you big virtual hugs! Hang in there! Keep coming back to ask advice or vent.

  • mavericksmom
    mavericksmom Member Posts: 1,047

    dory123, I am so sorry to read that you have breast cancer for a third time. I had it three times too, but all new breast cancers, not recurrences. I think there are more of us three-timers than the medical community realizes. I know several women who were diagnosed for a third time who live in my area.

    Please stay in touch with us here, we all have different experiences, but collectively, have a lot of information about dealing with breast cancer. There is always someone here who can offer advice and we are all here to listen and offer support! Wishing you the best as you go through the testing!

  • dory123
    dory123 Member Posts: 8

    Thank you all for your kindness. What a lovely community of compassionate individuals but how rubbish that we all have this 'ground hog day' experience when it comes to cancer.

    Things are moving quickly and I have bloods today, an urgent C/T scan on Thursday, and then a bone scan on the 4th Dec. There is a review scheduled for the 6th Dec with the oncologist so I hope to clear and have a plan by them. I have found (she says drawing upon multiple experiences), that once I have a plan, I'm good to go and feel much more in control.

    @mandy23 I hope that you are doing well now a year in.

    @mavericksmom my late mother had 3 separate primary cancers also. I was screened for the BRACA gene which came back -ve but they believe it is genetic. 4 immediate female relatives who have all passed away from breast cancer, ovarian cancer or who were unlucky enough to have both.

    @gailmary, thank you. I will be sure to mention it and hopefully if there is anything lurking, the bone and C/T scans will pick it up.

    @Katg, this 3rd recurrence post-mastectomy was diagnosed two weeks ago. I noticed two red patches below the mastectomy scar that were firm to the touch and just didn't go.

  • mavericksmom
    mavericksmom Member Posts: 1,047

    (((((dory123)))), thinking of you today as you wait for results from your oncologists review! Please let us know how you are doing. I agree, that once you have a plan, you will be good to go. I felt the same way!

  • dory123
    dory123 Member Posts: 8

    Dear @mavericksmom,

    Thank you so much. I'm feeling so cross. In spite of the NHS app (I'm UK-based) clearly stating my oncology appointment, several NHS text reminders of my appointment, a verbal reminder from the oncologist when she called with my results, and two calls to the clinic receptionists who confirmed the clinic was just over running but I was on the list, I received no call. I worked from home so I could take the call. I'm not a fan of home working. I'm a mental health nurse, so I rearranged two patient home visits. Nothing. No call, no text, no explanation, no update on the App. On the bone scan they took additional images of the chest area so now I'm simply left in limbo. We are short-staffed at work, I have several very ill patients and my head is just all over the place. I will let you know when I hear anything. As a nurse of 32 yrs, I can tell you that our health care system in the UK is struggling. It's in all sorts of trouble and it is mainly the good will of dedicated staff that keep it afloat. xx

  • mavericksmom
    mavericksmom Member Posts: 1,047

    dory123, I am so very sorry to hear that no one called you!!! I can't imagine what you are feeling right now! Waiting for results is the worst part of anything dealing with cancer.

    I really admire you for the work you do as a mental health nurse!

    I hope someone contacts you with results soon!!! I thought health care in the USA was a mess, it saddens me to hear that UK is the same.

  • spookiesmom
    spookiesmom Member Posts: 8,149

    Well, since my post in March, I have been diagnosed again with breast cancer for the third time this time it’s in my bones. Doc has me on ibrance falosadex and zometa. He always runs tumor markers and in January with my Pet CT scans nothing showed in June. He ran the tumor markers and they had climbed considerably. He called it concerning so I’m tolerating this treatment but the last tumor markers he ran they had climbed a little bit if I fail the ibrance it will be B onto the next treatment and he said then he would send the tumor out for I guess BRACA I don’t know he didn’t really say I don’t have any bone pain that I’m aware of. My back is screwed up anyway and there’s some arthritis in there, so is it screwed up anyway or cancer causing the pain it’s not bad, but that’s where I’m at now

  • gailmary
    gailmary Member Posts: 417

    Spookiesmom, your news really sucks. Glad to hear you don't have pain probably. That arthritis does confuse things a bit. I hope you tolerate your meds well and that they do the job a good long while for you.

    Gailmary

  • dory123
    dory123 Member Posts: 8

    Good morning/evening Spookiesmom,

    I hope any new treatment does its thing. I have a good few friends with bone mets and radiotherapy seemed to help with pain. Aas you say, the existing arthritis may make isolating what pain you may have difficult. Sending a transatlantic hug.

  • moderators
    moderators Posts: 7,681

    @spookiesmom, so sorry to hear about all you're going through. We're sending you virtual hugs, and wishing you all the best for a successful treatment.💗

    The Mods

  • mavericksmom
    mavericksmom Member Posts: 1,047

    Oh Spookiesmom! I am so very sorry to hear you have been bone mets! My MO doesn't run any routine tests, I did have a nuclear bone scan in August, but it was negative. I wish he would run tumor markers, but he doesn't. I know there are different schools of thought on that. I still believe knowing earlier and doing something about it is better, but what do I know? We are at the mercy of our MO's and their philosophy.

    (((((cyber hugs)))))

  • dory123
    dory123 Member Posts: 8

    Hello all and wishing you a Happy New Year. I hope it brings you health and happiness.

    Some positive news. I was told two days before Christmas that the bone scan and MRI were clear and there is no evidence of further spread. I have surgery booked on the 15th Jan for a wide excision to try and remove as much as possible and hopefully achieve clear margins too. That would be great! I am having a preventative skin-sparing mastectomy on the right side at the same time with implant reconstruction. Unclear what we will do thereafter but I'm assuming switching to an AI as tamoxifen has not been successful. I'm feeling relieved at the lack of evidence of spread and hopeful.

    Thank you for being there over a frankly sickening few weeks.

    Now that Christmas is all done, and we had a lovely family Christmas, I have to face telling the children (again). At least I give them some positive news at the same time.

    Warmest regards

    Deborah