Trying to keep calm, waiting is hard

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  • Logang
    Logang Member Posts: 421
    edited January 2016

    Thank you for the encouraging words. I wish you all good luck! Don't let the anxiety get to you!

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  • JACTsMom
    JACTsMom Member Posts: 55
    edited January 2016

    Just reaching out to give you a hug.

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  • Konakona
    Konakona Member Posts: 173
    edited January 2016

    I had an MRI with 2 additional suspicious areas, diferent quadrants, they did offer a byopsy but I decided to have a mastectomy, could not take the anxiety any more, no regrets, after the path report from the surgery came they were b9

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  • reflect
    reflect Member Posts: 576
    edited January 2016

    The saga continues...I guess I have especially difficult breasts to read. They are very large and extremely dense. So, results of the ultrasound guided biopsy yesterday afternoon: B9! Then a call from the radiologist this morning: maybe they missed the spot (They did multiple biopsies in 3 different locations. Ouch.Pin cushion or what?) and they are asking the breast center in Springfield (MA) to have a look. Radiologist said he would like to do an MRI guided biopsy next.

    Since 12/18/15 I have had multiple mammograms, ultrasound, stereotactic biopsy, MRI, and ultrasound guided biopsy. I am getting tired of the waiting and no clear answers. So why not do an excisional biopsy? He said they might miss the spot if they do that too. But...there are clips in there! (maybe the clips are in the wrong place?) GAAK.

    I like the providers, I think they are being very careful. They are very kind and forthcoming when I ask for info. I am glad someone else will be looking at my radiology though.

    I should hear by Tues 2/2 from the second opinion doc/s. Until then, I wait again. Is it going to be 2 months before I have a definitive answer?

    Anyone else have multiple tests and a long wait?

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  • kaylynn
    kaylynn Member Posts: 124
    edited January 2016

    Geez,you are never going to find out!!! For some reason they are not trusting the biopsies.Maybe there is something they see that still surprises them of the b9 results.The tissue samples to maybe.Some of this could be a billing issue,But if they remove the piece then find cancer and don't get clear margins you still would have to get another surgery.

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  • reflect
    reflect Member Posts: 576
    edited January 2016

    You know that scene in Princess Bride.." I'm waaaiiiiiting". So, now, I'm referred to Baystate Beast & Wellness to do the exact same u/s biopsy that just missed the spot at Baystate Franklin. So, they have better equipment? Better Radiologists? All I know is that it's another $250 for the same test that just stick me like 12 times for nothing. I called the nurse navigator at the surgeon's and the receptionist asked for a message I'm like, yeah, can you write WTF (she laughed), But SERIOUSLY. Cut it the f**k out and see what it is already. Now there's some node talk too.

    Inconceivable.

    You keep using that word, I do not think it means what you think it means.

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  • kaylynn
    kaylynn Member Posts: 124
    edited January 2016

    Have you seen a breast surgeon yet? Thats who did mine and will do the surgery monday

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  • reflect
    reflect Member Posts: 576
    edited January 2016

    Hi Karlyrie, Are you having surgical biopsy, or lumpectomy?

    I am not there yet, they haven't even found cancer but it's clear everyone thinks it is. So I'm scheduled for a second u/s guided biopsy on Tuesday, at a more comprehensive breast center. I guess they think they can do what my radiologist couldn't, which is locate & biopsy the tiny mass in my giant breast. I have my doubts, and it's really making me crazy. So, no surgeons involved at this point.

    I've hit a low point emotionally right now, I want to cry but the kids are here and I've told them it's no biggie--which is isn't (even though it is to me!) GRRRRRRRR.

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  • Affinity42
    Affinity42 Member Posts: 28
    edited January 2016

    I get you! Looks like I'm going to be on the every 6 month biopsy train. Much positive energy your way!

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  • reflect
    reflect Member Posts: 576
    edited January 2016

    Every 6 months biopsies? Why????? More power to you Affinity, if you can bear it, but don't think I can! Are you high risk? (I am)

    *edit: That doesn't sound good, Affinity, I'm sorry. I am frustrated myself, but if you are happy with your plan, I am happy for you. I just need a plan.

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  • kaylynn
    kaylynn Member Posts: 124
    edited January 2016

    I already had a core biopsy,b9 results. But they want to remove the mass now

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  • reflect
    reflect Member Posts: 576
    edited January 2016

    Karlyrie, where are you being treated? I'm in MA. I am in the same position, except they are not going to remove the mass yet. I don't understand why.

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  • kaylynn
    kaylynn Member Posts: 124
    edited January 2016

    a breast center in ME. Mine can be seen well with ultrasound. Not calcifications. I have those to but they have not grouped or formed a line. She said she will use the US to guide removal also even tho there is a clip already placed. 

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  • Meadow
    Meadow Member Posts: 2,007
    edited February 2016

    Sound advice Jill.

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  • Simple13
    Simple13 Member Posts: 45
    edited February 2016

    Not sure when the surgery is. I had an MRI and they found an inflamed lymph node and suspicious mass on the right breast. Have to go tomorrow to have an US and US biopsy. Hopefully will know soon what the results are. Everything is on hold until the results come in.

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  • Simple13
    Simple13 Member Posts: 45
    edited February 2016

    Not sure when the surgery is. I had an MRI and they found an inflamed lymph node and suspicious mass on the right breast. Have to go tomorrow to have an US and US biopsy. Hopefully will know soon what the results are. Everything is on hold until the results come in.

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  • Simple13
    Simple13 Member Posts: 45
    edited February 2016

    I had the US biopsy on the right breast yesterday. The radiologist is pretty certain that they are just fibroadenomas so that is great. Waiting now for the pathology report. The surgeon should have the results Friday or Monday at the latest. Meeting with the oncologist on Monday. Hopefully we can get this ball rolling now.

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  • Logang
    Logang Member Posts: 421
    edited February 2016

    Good luck Simple! Hope the pathology confirms that it is benign!

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  • Simple13
    Simple13 Member Posts: 45
    edited February 2016

    Thanks Logang. Best of luck to you also.


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  • reflect
    reflect Member Posts: 576
    edited February 2016

    Hi Simple, sorry you are still waiting. Fingers crossed for you.

    How are you doing Logang? Hope you are feeling much better.

    I heard Thursday that I have IDC, multifocal. Node biopsies not back yet. Mastectomy required for my right breast, and I'm leaning strongly towards removing the left also. It's starting to sink in, and it's hard to focus on work--I was trying to lead a workshop today and had to get someone else to jump in (I played "Vanna White" and did the easy stuff) and turns out she has had two cancers including bc too. She was very understanding. I posted in the IDC forum too. I hope my brain will clear up because I'm a teacher and can't plan lessons without good thinking!

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  • Beatmon
    Beatmon Member Posts: 1,562
    edited February 2016

    Reflect, sorry you got bad results after all of this time. Now you can move forward with a plan. It is hard to think clearly at times when it is all so new. Best of luck and healing

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  • Logang
    Logang Member Posts: 421
    edited February 2016

    Hello Reflect. I am feeling better, but I think my 2 drains are causing me problems. Hope to get them removed on Tuesday!

    Sorry to hear about your diagnosis. It sounds like you and I are quite similar. My IDC mass was large and centrally located in the right breast so a lumpectomy wasn't an option. I wanted the BMX, but my surgeon did not want to do both at the same time. I understood why after finding out about his strict post op restrictions. So for me, the plan is to pursue any treatment needed (waiting on the oncotype score) then go back for the LMX and begin reconstruction at that time.

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  • Simple13
    Simple13 Member Posts: 45
    edited February 2016

    Best of luck to you Reflect. I kind of have melt downs and sensory overload also. Trying to keep my focus on anything but my diagnosis. Don't know if that will work for you. Hope things work out for you.

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  • reflect
    reflect Member Posts: 576
    edited February 2016

    Beatmon, Logang, Simple13, thanks for your kind words. It is so helpful to hear from other women who have been in the same difficult place, or are now.

    Logang, what are your surgeon's strict post-op restrictions, and why does he have them? I was wondering why you hadn't done BMX, after sounding so sure you would. Does he see better results doing one at a time? I hope you get your drains out soon.

    Hoping for healing for all of us.

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  • earthly
    earthly Member Posts: 11
    edited February 2016

    I'm sorry to hear the news, Reflect. I'm glad that you have all these wonderful ladies here to talk you through, though. Even if the circumstances behind that sort of sucks. Waiting is so awful - and I'm just as bad at doing my head in. I can't even bring myself to believe that no news is good news. When I was 30 I was diagnosed with invasive SC cervical cancer, and it took six weeks before someone called me. Those words were literally just out of my mouth when the phone rang. But back then I didn't have a board like this, where I could pour out my worry and know that no one thought I was being silly or unnecessary. I hope that the next step goes well for you - I'll be looking out for good news.

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  • Logang
    Logang Member Posts: 421
    edited February 2016

    reflect: In his words, my surgeon didn't want to do the double, "to prevent unneeded complications that may prevent me getting the treated needed for the right breast IDC." He mentioned the possibility of infection. They had cleared my left breast with a biopsy of a suspicious area. His restrictions are not moving my arm more than a 45 degree angle and no lifting over a pound. I had 3 drains after surgery and he ended up taking a lot of nodes. If he would have done both, I wouldn't have been able to do anything for myself! The pain I had from the lymph node removal was the worst part!

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  • Simple13
    Simple13 Member Posts: 45
    edited February 2016

    Great news. No cancer in the right breast. I had my oncology consult and she thinks that if I have the mastectomy, and there is no lymph node involvement, I may just have to take Tamoxifan for 5 years and be done with it. So excited. Spoke with the surgeon and told her that I opted for the mastectomy and reconstruction. Have to have a consult with the plastic surgeon and find out his plans. Yay-I am on my way!

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  • reflect
    reflect Member Posts: 576
    edited February 2016

    Great news Simple. What a relief and now you can move forward.

    Unfortunately I have + lymph nodes so chemo is in the picture. Three appts this week. I really want to get started b/c waiting is just too hard.

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  • Simple13
    Simple13 Member Posts: 45
    edited February 2016

    I know. Best of luck to you. Keep the faith.

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  • momzombie
    momzombie Member Posts: 8
    edited February 2016

    Affinity42,

    Do you mind my asking why you need ultrasound of your kidneys every 6 months?

    Thanks.

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