How do I decide what to do?

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Seraphima
Seraphima Member Posts: 97
edited February 2017 in Surgery - Before, During, and After

I am really unsure. I have been following my doctor's advice. Now I think maybe I should have asked a LOT more questions, but I was just overwhelmed in the beginning, and there was not enough time to know what all the questions were.


What happened - last summer, had a longstanding nipple erosion, and finally got coverage so I got mammograms. Nothing showed up in mammo, ultrasound, or MRI, but the biopsy for nipple came back Paget's. Had surgery (partial mastectomy), where they found a 4cm tumor they hadn't seen on imaging. Didn't get clean margins, so I went in for another surgery. Followed with radiation right breast all around, 25 + 5 boosts.

I've also had issues from all this - maybe the rads or surgeries have depressed my immune system, I don't know. But every time I went back to work (teacher), I'd come down with flu-like symptoms and be out for a week or two. Around Christmas I got a flu that lasted 3 weeks, including pink-eye, so that even if I pushed through symptoms, they would have sent me home. I've worked about 5 days so far since completing rads early November. I have felt good for a few days now.


I went in for follow-up mammo. I think it is still the same, but NOW they are saying it was all this area of concern in the other breast (they are saying "mass of calcifications) that should have been addressed last year with the rest - but back then they said of the same breast that there were a few calcifications that were probably nothing and we'd just keep an eye on them. I don't think the mammo is showing anything different from before. And I've had skin flaking on that nipple that won't heal for about 7 months, which was biopsied and came back dermatitis.

So, with their advice, I had a stereotactic biopsy (kind of a needle core-sample) and a titanium marker placed. They found no cancer, which I thought was good news. But NOW my oncologist and surgeon both say the mammo looks too bad, and they think there is at least a 25% chance it is cancer. So they want me to have surgery again, general anesthesia and the works, for a larger biopsy.

He said if that biopsy came back positive, we can do more surgery to remove the cancer. If it comes back negative ... they want me to come back in three months and have another surgical biopsy. They seem to plan to keep checking until/unless they find cancer, at which time they will recommend surgery to remove it.

To be honest, right now I'm not willing to undergo surgery 4x a year to keep an eye on things. Maybe I'm looking at it wrongly, but it seems like continual missed work, inability to do what I want to do, recoveries, expenses, worries each time, and surgical risks, multiplied x4/year. I'm just not wanting my life to look like that.


If it's going to be surgery until we get bad news, at which time - surgery ... I'm thinking seriously about going ahead with a mastectomy and being done with it (I hope!). I know it's a much more involved surgery. I don't know if I can get a doctor to do a reconstruction (I'm on Medicaid because I've missed most of a year's income.) And I'm also thinking double mastectomy just to be DONE DONE because the right breast is misshapen and missing the nipple anyway, but I'm also told reconstruction there would be a problem since I've had radiation. So I'm bothered I wasn't told all the options/possibilities before I began treatment in the first place.

Maybe I don't even need reconstruction, but I'm kind of thinking I want SOME sense of normalcy. Having the other side misshapen and half the size (I actually like the smaller size) is a bit of a problem to me, and imagining NO breast on the other side would just make it worse.


Or maybe mastectomy on the left side, and reconstruction there and just deal with the other side. I don't even know what reconstruction is like - how long the surgeries will take to heal, what the results would be, if there are potential complications I might not want to consider.


My head is swimming. How can I proceed to let them know what I want to do? They are waiting for some decision, and if it looks THAT bad maybe it needs to be addressed. I do not want it to spread! But I don't even know what information I'm missing, or who or how to ask. No one I know has any input for me.


And my mother, and her mother both died of cancer, at close to my age (I'm 51). So I'm inclined to be cautious too.


Any input? Thanks for listening!!!!!

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Comments

  • Kayla250
    Kayla250 Member Posts: 201
    edited February 2017

    Wow, you're amazing! I don't think I could handle all that. I'm just awaiting a "recurrence can't be ruled out" referral to my surgeon and it's driving me crazy. I can't imagine having so many biopsies and surgeries; I just can't figure your doctor's out? For me (I'm 52), how "they" look isn't an issue for me nor is functionality (my attempt at humor, sorry) But that is a BIG decision and it's a good idea to get as many opinions, either way, as possible. Hoping you find comfort in your decision.

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  • BarredOwl
    BarredOwl Member Posts: 2,433
    edited February 2017

    Hi Seraphima:

    When unsure, sometimes a second opinion from an independent institution can be helpful. Some people look for an NCI-designated cancer center (confirm in-network):

    https://www.cancer.gov/research/nci-role/cancer-centers/find

    Also, with your family history and prior diagnosis at a relatively young age, have you been referred for Genetic Counseling for a genetic / familial risk assessment and advice regarding possible genetic testing (e.g., BRCA1, BRCA2, other genes)? If testing was recommended and of interest to you, the results of such testing might influence surgical choice.

    BarredOwl

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  • Seraphima
    Seraphima Member Posts: 97
    edited February 2017

    Thank you, Barred Owl. I will visit that website and see what I can find.


    No one mentioned genetic testing. I am not sure Medicaid would pay for it (that's all I have since I've missed so much work). I need to find out what they WILL pay for and what the caps are so I don't go over anyway, so I will ask about this as well. Thank you for the suggestion!

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  • Fearless59
    Fearless59 Member Posts: 74
    edited February 2017

    Hi, Seraphima,

    Thank you for sharing your story.

    WOW!!! It seems that your breast tissue is showing an inclination to fool the mammogram readers. Thats one thing that worries me. It probably worries the doctors too, hence the hovering.

    Even so, I would be super annoyed at the inconvenience of being expected to keep coming back. And general anesthesia for another bigger biopsy? Ugh! I never vote for general anesthesia unless no other option.

    I agree with the idea of looking into the genetics if practical.

    I think I would probably want to keep it simple if this were me. I don't like any body part being "high maintenance."

    By the way, I have one breast and do not really miss the other one. Just glad to be healthy.

    It seems they do not intend to leave you alone! Second opinion a great idea.

    Also, read all you can about your condition/ path report, etc. I feel at such a disadvantage when I do not know the "rules of the game" and more info makes me confident about my decisions.

    Good luck!!

    Fearless

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  • Luckynumber47
    Luckynumber47 Member Posts: 397
    edited February 2017

    Instead of trying to figure everything out at once why don't you break it down into steps, kind of a flow chart.

    Step one: do I want to keep the breast and do regular testing or do I want to stop it here with a mastectomy?

    If the answer is mastectomy: step 2, do I want reconstruction?

    If the answer is reconstruction: what types of reconstruction are available to me and what is covered by Medicare. Reconstruction does not have to be done right away. You can take plenty of time to decide.

    I had a BMX with basically no reconstruction. It was absolutely the best decision for me and I am grateful every day that's the way I went. You will know in your heart what is best for you

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  • NancyD
    NancyD Member Posts: 3,562
    edited February 2017

    Radiation doesn't necessarily rule out recon. I had DIEP flap recon 18 months after I finished active treatment which included about as much radiation as you can have. A plastic surgeon will give you an idea of which kind of recon will work best for you. Maybe you can ask your surgeon for a recommendation for one that might work with breast cancer Medicaid patients. Or wait until you have better insurance.

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  • Goincrzy8
    Goincrzy8 Member Posts: 387
    edited February 2017

    I would definitely get a second opinion so you can make a more informed decision. Does your center have a nurse navigator? They can help you along the way.

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  • Fearless59
    Fearless59 Member Posts: 74
    edited February 2017

    Sera,

    Another thought is that I have noticed it is such a crazy-maker for me when I am "stuck on a maybe." My mind just goes round and round and no work gets done (hardly) and it is sooooooo time consuming. That awful feeling is probably going to stay until you get enough data to make a decision, so just keep digging until you get to the decision point! You will!!

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  • Seraphima
    Seraphima Member Posts: 97
    edited February 2017

    Hi Kayla,

    Didn't mean to ignore you the other day - for some reason I missed your response when I came back to reply. If I had known in the beginning what all I would have to do, I might have made different decisions. Especially since the first biopsy was horribly traumatic, though the others have been more invasive and with more side effects. (Still fairly minor) But if someone had told me up front I'd have to go through all of that, I probably wouldn't have thought I could either, is my point!


    As to how they look - I thought I didn't care. I was ready in the beginning to chop one or both off. But I have had some issues come up because of the one I've already had a partial, and I'm just not sure. If only I never had to be naked again, I wouldn't mind at all. But I'm afraid a reference to "Frankenstein" still stings a bit.


    But I guess I'll do what I have to do. I'm just trying to figure out what that should be. :) Thanks for the reply.

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  • Seraphima
    Seraphima Member Posts: 97
    edited February 2017

    Thanks, Fearless,


    Yes, it seems that the imaging isn't something they trust. And going into my first surgery with no idea I had a 4cm tumor, I can actually appreciate that caution on their part. I was worried initially how I would be "sure" with only mammo to follow up, when it didn't show anything the first time.


    I guess I'm thrown off by the fact that now they seem to think the mammo IS showing something, and they just can't find it with biopsies. So my previous experience isn't helpful in that.


    I could ask again if doing without the general anesthesia is possible. I might lean SLIGHTLY more in favor of continued biopsies if it wasn't for the idea of having a general and the whole surgical rigamarole every few months. But the surgeon said it would be a general, and there was no other way. He also said that in case of a full mastectomy, he would finish and the plastic surgeon would immediately take over to do the recon. I'm not sure if that's the "best" way, if he thinks he's saving me money/surgeries, or if ... what? But it seems it's not the only option after all (which seemed pretty common sense to me).


    I'm tired of getting conflicting answers, and if I'm expected to make a decision, I just want as much info as possible before I do. And everyone is in something of a hurry to do this.


    I'm in a bit of a hurry too though - not for a good reason, maybe, but I like to swim. And last year I missed nearly the entire season with all the proceedures and so on. They finally released me in late November and by then the water was too cold. My arthritis is also acting up, and I'm getting in worse and worse shape with fewer options for exercise, and I need to get back in the water. I don't want to miss swimming this year as well.


    And I agree that being unsure of what to do is difficult for me. I find that I need an answer, maybe to feel in some control, LOL, make a plan, get busy. It was better for me all through this process to know what to do next, and I need to get to that stage.


    Thanks for the info and suggestions. :)

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  • Seraphima
    Seraphima Member Posts: 97
    edited February 2017

    Thanks, Luckynumber,

    I may try that, once I get some info. But for me, the possibility, or not, of a recon fits also into the whole question of biopsy or mastectomy. I'm also questioning the possibility (though rare, I've had ongoing symptoms for 7 months) of Pagetts on that side, and possibly ending up with another square breast without a nipple.

    I don't know, I might prefer a mastectomy, even without recon, to that. And honestly, having one smaller breast is helpful to me with other health issues, so I have to weigh that as a bit of a benefit.


    What is very helpful is to think that a recon could wait so long. I didn't realize that. It would be a whole other series of surgery/recovery ... if I take off in summer, I miss swimming and gardening ... if I take off in any other season, it costs me work and income. But that has to move down my list, both of them, compared to health. But how we live our lives is worth counting in there too, somewhere.


    Ah, see, I'm still very indecisive and thinking of many things. But I AM glad to know I can delay a decision on recon. Perhaps it won't bother me as much as I think, and I can avoid the whole thing altogether. Having time to make that particular decision is a benefit though. Thank you! :)

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  • Seraphima
    Seraphima Member Posts: 97
    edited February 2017

    Thanks, Nancy,


    Knowing that I might have more options is helpful. If I could get a consult that could tell me what exactly might be possible, and what would be involved, that would be helpful. I'll work on finding someone who will help, if possible.

    I'd like to count on better insurance someday, but at the same time, I guess I feel kind of knocked down. The surgeon said I could go back to work after a few days, and that didn't happen. The radiation oncologist said the radiation wouldn't affect my immune system (and maybe it didn't, maybe it was the whole ordeal) ... but something did and I have to be SO careful going out or getting around anyone or I end up with a flu again. So, while I'd like to THINK I'll be back to normal and can have a regular income and good insurance someday soon, I feel like I have learned not to count on anything. I wouldn't want to make a decision based on that, and then have to live with the reality that I would have done something else if I had known the real situation.


    But just knowing that if I decide, recon after rads is POSSIBLE, opens up the board a bit and gives me freedom to consider possibilities. LOL, otherwise I might have had decisions made for me and simplified things, but that's not really what I want.


    It's funny, I really thought I wouldn't even want a recon at all, before I got the partial. Now I would really like just a normal shape over there. I can't wear t-shirts anymore because the shape is just too strange and it shows through the fabric.

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  • Seraphima
    Seraphima Member Posts: 97
    edited February 2017

    Thanks, goincrzy8,

    So far they seem to be referring to each other and not knowing anyone outside who they can refer me to. It may be the Medicaid issue. It may be the arrangement the docs have (most of them except my surgeon are all part of a physician-owned co-op). But now that I think of it, my Primary (who actually my oncologist is managing everything, but he did set me up with a General Practitioner for everything else) ... she's been fantastic at getting me referrals. I'm not due to see her again for almost a year, but maybe I should call.

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