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Diagnosis in December, just home now to deal with it

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  • buzzbomb
    buzzbomb Member Posts: 45
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    well, the sentinel node biopsy has come and gone (April 20). Everything went well but I am not recovering as I anticipated, I have sharp pains in the armpit area, not at incision. It’s not always but they catch me off guard and I’m not happy. I am slouching to keep the pain at a minimum…not happy with that either. Every day I hope it gets better, maybe tomorrow. It’s my left side and I find I can’t sleep on my right side as the pain in the left armpit is unpleasant in that position. I’m cranky and tired and am having quite the pity party….I just want to garden and go to the gym, I feel my little body is wasting away without the weight training I am so used to.

    But I have decided to suck it the heck up, things could be so much worse. I can walk, so longer walks with the sweet puppy are a must. The total gym can be used without arms, so there’s another thing. Yoga stretching can continue and my art can become front and centre again. All the little life blips are just that, little blips that will soon be forgotten.

    Final results May10. So looking forward to closing this chapter of my life and turning the page….where will it lead me? I predict a great adventure

  • jelson
    jelson Member Posts: 622
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    Hope the armpit pains go away. Glad you are finding alternative activities while you totally heal. This will soon be behind you, a kind of adventure and one that you hadn't chosen but soon on to new adventures.

  • buzzbomb
    buzzbomb Member Posts: 45
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    pain is lessening but it's stil there…patience.

    Got a call from the cancer clinic yesterday. Have an appointment for May 9 to discuss diagnosis and treatment plan, an hour long appointment. Looking forward to the beginning of the end!

    I hate that the next day I have to see the surgeon for my results ( which I will already have from the cancer clinic…). I guess that's how they get paid (canada

  • buzzbomb
    buzzbomb Member Posts: 45
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    no node involvement! Yippee. So it’s just radiation and tamoxifen…..not wanting to do tamo. Will debate the issue with my surgeon tomorrow.

    I do not like my oncologist. I felt she trivialized my questions. I don’t care if they were silly questions, I wanted answers. Don’t think I’ll see her again.

    Anyone who didn’t take tamoxifen? My cancer was so small, 4mm with 1mm micro invasion, that my chance for recurrence in five years with surgery alone is 95%. Why are they pushing tamo?

  • alleycat5
    alleycat5 Member Posts: 33
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    Hi buzz - Just wanted to say I'm so happy to hear your node was negative! That was a huge one for me as well. And I found the sentinel node biopsy site more painful than either my first lumpectomy or the second re-excision one they did to get clear margins. I thought the incision was constantly more irritated because every time I put my arm by my side, it rubbed under there and stuck together. It seemed to take longer to heal as well, although it's all good now. That SNB surgery and reexcision were April 1 after the first lumpectomy on March 22. I'm finally getting some feeling back on the skin under my arm from my armpit to almost my elbow. I didn't expect that part either.

    Like you I was DCIS until that first lumpectomy when they found the 6mm IDC. But I'm also HER2+, so I had the surprise of going from thinking lumpectomy and radiation with Tamoxifen (for the ER/PR+) to now I've added chemo with Herceptin for 12 weeks and Herceptin infusions continuing for the next year. Had my second chemo today. This breast cancer diagnosis is just the gift that keeps on giving, although I can't find my receipt to return it and I really, really want to! :)

    I believe you should definitely find a new oncologist. I think you need to feel like the entire team is behind you, and it doesn't sound like that one is.

    Sending positive vibes to you for your surgical appointment tomorrow!

  • salamandra
    salamandra Member Posts: 745
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    Hi buzzbomb,

    I don't know how old you are, but I was under 40 when I was diagnosed and to be honest, the five year recurrence rates were among the least interesting to me. I have my hopes for living many more years, and the frustrating thing is that recurrence statistics don't go far beyond 15.

    The reason docs push hormonal treatment is because there is very good evidence that helps a lot of women (not every woman, but they don't have a way of distinguishing yet) and because recurrence can be a terrible outcome. "Recurrence" in the context of these statistics refers to metastatic recurrence. Once you have a metastatic recurrence, it's no longer considered a curable illness and it's a question of extension of life, often with the help of drugs with less evidence and more side effects than tamoxifen. I watched my mother suffer for two years and die from metastatic cancer at the age of 54. I would do a lot to avoid that fate for myself.

    That said, it really is a personal decision and the risk/benefit calculation is different for everyone. I didn't even know for myself how far I would go until it became clear that I couldn't tolerate tamoxifen and would have to decide between trying something else or going off. But if I had been 78 instead of 38, I'm sure it would've been a very different process.

    I think it's better to think of the appointment with your oncologist as a conversation and not a debate. Ultimately, there's no "winning". You make the decision for yourself what to put in your body, no matter what the oncologist thinks. Their knowledge and experience are tools and assets for you for making your own decision, not an opponent to be defeated. If you decide to forego hormonal therapy, it should be an informed decision.

    It's also important to know that many women tolerate tamoxifen just fine, whether it goes easy from the start or it takes some time and help for their body to adapt, or for them to find a dose and regime that works for them.

  • buzzbomb
    buzzbomb Member Posts: 45
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    thanks alleycat and salamandra for your insightful comments! I saw my surgeon today, she's awesome. She was quite happy to listen to my concerns and added her own thoughts. I am 65, btw. I know all about breast cancer as my mom had it at 40 and lived to 72, bless her heart….she never had a recurrence of breast cancer but did die of cancer, a secondary caused by her breast cancer treatments. Extremely sad.

    I digress….

    So, my cancer was very tiny, was excised completely and recurrence rate is very low. So, do I want to take tamoxifen for the next five years, from 65-70…what I believe are the best years before I age out a bit. Travelling and adventures are very high on the list. I don't want to worry about blood clots, joint pain, nausea…all side effects. Finding relevant info on DCIS and tamoxifen is not easy. Risk of death is unchanged which I found interesting. So, if recurrence is an issue, how old would I be? 80? How will things have changed by then? At 80, will I give a $#*#? So many questions, so very few answers.

    Good thing is there is no rush. I can wait, I can research, I can soul search….

    Happy to hear more opinion

  • salamandra
    salamandra Member Posts: 745
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    I'm so glad you like your oncologist! It makes a huge difference to have a doctor you like and trust.

    Did I miss something or is there a reason she is recommended tamoxifen rather than an AI class drug? You're not still menstruating, I imagine? My understanding is that generally women who are post menopausal have better tolerance and fewer side effects with AI drugs.

    My kneejerk reaction is to commit to trying the drugs and make a plan for yourself how long you'll try for. Somewhere between trying one type of med for at least one month and trying all 4-5 meds (3 AIs plus 2 SERMs) over 12-15 months. This would be just in case you are one of the women who doesn't get any side effects at all, in which case it would seem to be too bad to forego the benefit. But I am a very risk averse person and also have not been in your shoes. I don't think there's a wrong answer here - it's about finding the decision you will feel good about living with.

  • buzzbomb
    buzzbomb Member Posts: 45
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    wow, it’s been a hot minute…..

    Just to update for anyone who is similarly diagnosed. I just today finished a short course of radiation, partial breast, five days. I am beyond thrilled to have had a short duration of radiation. I am currently taking tamoxifen and have an appointment with the oncologist next week. I am thinking of not taking the hormone blockers any more. It’s something I struggle with. My recurrence is ultra low already….cancer was so tiny (3mm). I think tamoxifen is overkill for my personal situation.

    I’ll update on my final choice later.