Best Questions to Ask When the News is Recurrence?

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Teddy88
Teddy88 Member Posts: 102
edited August 2017 in Not Diagnosed With a Recurrence or Metastases but Concerned

Dear Friends:

I mentioned last week that I was called back following annual mammogram for one US - guided biopsy and 2 stereotactic biopsies in the breast in which tubular cancer with ADH appeared in 2014. ( I had a lumpectomy with rads in 2014. ) Ki-67 = 2% E+, P+ and H- I am 55 years old.

Following the biopsies today, the doctor told me that she is very concerned about a spot about 8mm in size -- has spiculations and some microcalcs around it. At the beginning of the biopsy, she said she would know more after the biopsies concluded. At the end of the biopsies, she told me that she was now officially very concerned. I take that as a "get ready - we may have a new problem." I am not an alarmist, but her candor was useful.

When she calls me tomorrow with results, I would like to ask the right questions. I can spend the next 24 hours googling, or I can ask this kind community some questions. I am fine with open and candid responses. I will ask these questions of my ob-gyn and surgeon when she is back from vacation.

1 - Is recurrence generally the same cancer type? or does a brand new type pop up? The action is located right near surgery scar.

2 - Would this cancer have traveled (some of you answered that for me last week in a different post) My doctor did not check nodes in first cancer surgery - said tubular doesn't travel and was too small.

3 - I know this is a mastectomy situation with a new cancer since I had lumpectomy and radiation. Does insurance pay for a double mastectomy if cancer is in one? I am interested in having a double - with no reconstruction. My insurance is good at this time.

4 - Do you need chemo, in general, if cancer comes back 3 years later?

5 - What else to ask?

I would like to add - because I know this community "gets it" - that I was told last week that my job and health insurance will end on Nov 1st. If anyone has any words of wisdom for dealing with a couple of weeks like this - bring it on.

Sending everyone who reads this my thanks for taking the time to consider my questions.

Love,

Belle xxoo

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  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited August 2017

    Belle, I have no insight nor advice regarding your questions but want to send my support as well as express my dismay that both your job and your insurance are ending at such an especially rotten time. You're probably already looking into alternatives; I hope you can swing COBRA or similar 'bridge' insurance.

    Good luck with it all. Take care of yourself. Sending LOTS of support.

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  • Teddy88
    Teddy88 Member Posts: 102
    edited August 2017

    Thank you so much Hopeful - I love your screen name :) xxoo

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  • marijen
    marijen Member Posts: 3,731
    edited August 2017

    Hi Teddy, just read your post. If I think of questions I will let you know. I see you were ER PR positive HER2 neg. Were you on aromatase inhibitor or tamoxifen? This is really bad news for you, I am so sorry.

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  • Tappermom383
    Tappermom383 Member Posts: 643
    edited August 2017

    Since I'm a relative newbie, Belle, I don't have any words of wisdom for you either. But I wanted to say how much I admire the calm way you are approaching this. Sounds to me as though you have a good handle on questions to ask.

    Too bad about your job. I lost my job last November but fortunately had already made the switch to Medicare so insurance wasn't an issue for me. But I've gone the COBRA route before and it works quite well.

    Best of luck to you. Keep us posted.

    MJ

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  • Teddy88
    Teddy88 Member Posts: 102
    edited August 2017

    Hi Marijen: My MO worried that Tamoxifen would be tough for me due to family history of heart issues, and the AI's tough because my Mom has rheumatoid arthritis. No meds yet. Thanks for taking time to reply -- xxoo Belle

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  • Teddy88
    Teddy88 Member Posts: 102
    edited August 2017

    Hi MJ - Thanks so much for replying, and for your kindness. And so glad you are covered with Medicare - it really works. Keep ya posted. xxoo Belle.

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  • KBeee
    KBeee Member Posts: 5,109
    edited August 2017

    Sorry you are dealing with this.I can tell you from experience that the ER, PR, HER2 status can change. Pathology will give you that information.

    If you can fill in your previous diagnoses and treatments, that is helpful as we comment.

    As far as whether or not it has traveled, you will need to speak with MO about a PET scan.

    Insurance is required to pay for bilateral mastectomy. You'll need to pay normal copay, etc.

    Since tubular is rare, you may want to request a second opinion.

    One frustrating thing I learned is that there is little research (as in almost none) on how best to treat local recurrences as far as chemo, etc. most seem to treat it like your first cancer when it comes to the medical oncologists. I had multiple opinions which were all over the place.

    I would ask how they plan to sample lymph nodes. Sentinel node biopsy is sometimes used, but is not always successful because of prior surgeries affecting drainage.

    Have you had an MRI? That may give info about nodes.

    Keep us posted. You can do this

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  • Emily2008
    Emily2008 Member Posts: 605
    edited August 2017

    Sorry for what you're dealing with, Belle. Here are my answers:

    1 - Is recurrence generally the same cancer type? or does a brand new type pop up? The action is located right near surgery scar.

    -Sometimes, but not always. My recurrence was still ER/PR positive, but much less PR positive than the first time. Plus, my Ki67 score was significantly higher.

    2 - Would this cancer have traveled (some of you answered that for me last week in a different post) My doctor did not check nodes in first cancer surgery - said tubular doesn't travel and was too small.

    -I'm unfamiliar with tubular cancer, so I can't answer that.

    3 - I know this is a mastectomy situation with a new cancer since I had lumpectomy and radiation. Does insurance pay for a double mastectomy if cancer is in one? I am interested in having a double - with no reconstruction. My insurance is good at this time.

    -Yes, insurance is required by law to pay for a double.

    4 - Do you need chemo, in general, if cancer comes back 3 years later?

    -It's not a slam dunk that chemo is necessary. It depends on the type of cancer and the time span between the first cancer and the recurrence. And, of course, whether there is node involvement. In general, IDC recurs within 4.7 years, so a recurrence after that time is looked at as a new primary. Therefore Oncotype gene testing is ordered on the tumor sample and a decision regarding chemo is made. My second breast cancer came back with a somewhat low recurrence score, so the med oncs I consulted with said I didn't need to do chemo again (did it the first time). Again, tubular may be different, but this is what I've experienced.

    5 - What else to ask?

    -Is imaging necessary? I would ask for a CT and bone scan to check for mets.


    Very best of luck with everything.

    -Emily

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  • dtad
    dtad Member Posts: 2,323
    edited August 2017

    Hi Teddy. So sorry you are going through this. The only thing I would add is to advise you to have a MRI before you make any treatment decisions. You want to make sure you have the whole picture first. Good luck and keep us posted...

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  • Teddy88
    Teddy88 Member Posts: 102
    edited August 2017

    Dear Emily: I wanted to thank you so much for taking the time to answer my questions. All of the information you shared is so helpful, and I will be gratefulevery time I see your screen name - my greatest thanks and a huge hug xx Keep you posted -- Belle

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  • Teddy88
    Teddy88 Member Posts: 102
    edited August 2017

    Thank you so much dtad - I will surely ask for the MRI. Again, thanks again for your kindness and keep you posted! Belle

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  • grainne
    grainne Member Posts: 245
    edited August 2017

    Belle, do you have any news? If you feel able to share it, we are here. X

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  • Moderators
    Moderators Member Posts: 25,912
    edited August 2017

    Hi Teddy88,

    Here is some questions and answers from our main site on:

    Frequently Asked Questions about Recurrence


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  • Teddy88
    Teddy88 Member Posts: 102
    edited August 2017

    Dear Friends:

    An update to let you know that the areas in question turned out to be fat necrosis from previous biopsies and lumpectomy. A spiculated mass + two microcalcs sitting nearby caused the radiologist to warn me that things did not look well. This was the same presentation as was during my tubular carcinoma three years ago.

    Radiologist was so surprised by the necrosis findings that she ordered that the samples be tested a second time (by excellent pathologists in the NYC region.) I share this so that anyone reading might hear that unpromising biopsies can come back with decent results, to share with any tubular patients my experience, and to thank each one of you who responded to me during my least favorite week of my life with hope and caring. My eternal gratitude. I am supposed to follow-up with another mammo in 6 months, and will be keeping you posted. Love, Belle xxoo

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  • grainne
    grainne Member Posts: 245
    edited August 2017

    Thank god! That is great news! X

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  • Teddy88
    Teddy88 Member Posts: 102
    edited August 2017

    Thank you so much, Grainne. I really appreciate your note! xx

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  • Tappermom383
    Tappermom383 Member Posts: 643
    edited August 2017

    Oh, Belle - I can only begin to imagine the relief you are feeling! Thank you for sharing this part of your journey - something for us all to tuck away.

    Enjoy your weekend with this burden off your shoulders.

    MJ


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  • Teddy88
    Teddy88 Member Posts: 102
    edited August 2017

    Thank you so much, MJ! I really appreciate your kindness and words of support -- it means so very much to me. Virtual hugs xxx Belle

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  • herewegoagain59
    herewegoagain59 Member Posts: 13
    edited August 2017

    I had my yearly mammo and ultrasound done last week.Got a call from Oncologist who basically told me they found a .5mm spot at the 4 oclock position on left breast,same breast that had DCIS in 2015 but not in same area.They are wanting a MRI to see this better etc...and guessing a biopsy to follow..so here is my question..I have had rads in left breast and lump.

    1.what is my best option if in fact its back in anothet duct?

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  • Teddy88
    Teddy88 Member Posts: 102
    edited August 2017

    Hi Here....

    I am sorry that you are dealing with another potential issue. Just to clarify - are you asking how to treat a possible problem given that you have had rads in same breast? Did you have whole or partial radiation in the first instance?

    Wishing you good luck and B9 results. Can you keep us posted?

    Love, Belle xx

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  • pajim
    pajim Member Posts: 2,785
    edited August 2017

    herewegoagain, if you had radiation the first time, well they can't radiate the breast again. SHould this turn out to be malignant you'd need to have a mastectomy.

    If you haven't had radiation to the breast you can have a lumpectomy and radiation.

    WIth luck it will turn out to be nothing at all and you won't need this advice.

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  • marijen
    marijen Member Posts: 3,731
    edited August 2017

    I wouldn't rule out another lumpectomy just because can't get radiation. It's hypothetical anyways

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  • bevin
    bevin Member Posts: 1,902
    edited August 2017

    I have been reading in some cases they can radiate again. Not sure what the differential decision is, but I'd scope out a really good center. Theyd hopefuly be up on the latest.

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  • kira1234
    kira1234 Member Posts: 3,091
    edited August 2017

    I just went through a reacurrance this summer. My surgeon said lumpectomy wasn't advisable

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