Confusion. Hoping for answers.

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Tom1981
Tom1981 Member Posts: 52
edited January 2017 in Stage III Breast Cancer

Hi all,

I'm writing with regards to my wife and have questions. She is 39 and we found out about her BC a month after our wedding. (Needless to say, the worst wedding present) her tumor is/was an odd shape with tentacles. 8cm x 6cm x 3cm to be precise with 5 nodes lighting up on PET/MRI. Only 1 was biopsied. I'm confused on how big in reality to call the main mass. Oncology at the start of chemo said we were IIB/IIIA borderline ER+ ~95% PR+ ~95% HR-. No BRCA positive genes. She had 4 rounds of biweekly AC and 12 rounds of weekly Taxol. Now the PET shows no uptake anywhere. According to the oncologist there was significant shrinkage to the main site and what is there might be dead tissue or scar tissue. According to the surgeon the size sounds the same as in the beginning which confused us but stated the same comments about the tissue. Don't know who to believe. We built the best team we could at the Cleveland Clinic here in NE Ohio and are pretty confident in their abilities. She has double mastectomy surgery next week. There's the background.

Here are my questions/concerns...

1. We have been told after surgery whatever the pathology report says is your information going forward. I have found nothing regarding changing of staging in reverse. It seems as though the chemotherapy before surgery route is newer so I don't know. If someone could clarify this I would love to know.

2. I have some concerns because one of the lymphnodes that lit up was close to her heart. It no longer does but they don't want to remove it if it isn't lighting up because they would have to go deeper. They said they will hit it with radiation. Does this sound like the right thing to do? It was never verified to be cancer to begin with.

I just want her to be okay, which of course is the norm here. Hopefully someone can help me rest easier. I want her to be cancer free. She has done amazing through chemo physically. Mentally she's a nightmare but I assume that is normal. I have my ups and downs. Google has been my friend and my enemy. The doctors said at the beginning she would have a crap year but would be cancer free. Ok I'm rambling.

Tom


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  • Denise-G
    Denise-G Member Posts: 1,777
    edited January 2017

    Cleveland Clinic does an amazing job, great doctors and an amazing reputation with breast cancer treatment. I would ask your questions directly to your wife's physicians. I am glad your wife has this great team and goes there!

    There is no part of the year of cancer treatment that is easy ESPECIALLY when you just got married!!

    Sending all my best!


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  • Tom1981
    Tom1981 Member Posts: 52
    edited January 2017

    I just try to be a rock for her so I don't want to ask questions of fear when they won't change anything. Just trying to figure out some oddities. I hate the big C with a passion because of what it has done to my own family growing up. Never thought my young wife with no family history would get it too. I just want her to beat this so she can get her happily ever after. She had such a crap upbringing and doesn't deserve this. I wish I could trade places with her. I wish I knew the answers. The uncertainty sucks so much.

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  • stephilosphy00
    stephilosphy00 Member Posts: 386
    edited January 2017

    Hi Tom,

    I was dx last November also at young age. My BC is highly ER/PR+ and I am also negative for the genes! Now I am still on neoadjuvant chemo, I totally can understand how hard the whole thing is. Just take one day at a time and you and your wife can eventually get through this!

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  • Kicks
    Kicks Member Posts: 4,131
    edited January 2017

    It would help with those who reply if you would fill out your/her Profile. All BC (DCIS/IDC/ILC/IBC) is not the same and it would make it easier for those with similar DX to respond.

    Neoadjuvant chemo is not new - it has been SOP for IBC (Inflammatory Breast Cancer) for many years but it is becoming more common for other types. Many do have a complete pathological response at time of surgery.

    If she is thinking about recon - has she seen a Plastic Surgeon yet?

    As she will be having lymph nodes removed - has she had an appt with an LET (LymphEdema Therapist) for an evaluation and education? Even though many/most Drs are woefully ignorant about LE - it is very real for many.

    Lots of potential questions to be asked/answered.

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  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited January 2017

    Hi!

    I wouldn't worry too much about staging. We think I was Stage IIIA when I was diagnosed (5 cm+ tumor + 1 compromised lymph node). However, we will never know for sure because neoadjuvant chemo wiped out all the active cancer in my breast and compromised node. That doesn't mean I was re-staged; in fact, my treatment went forward as if I were still IIIA. I got my surgery, my lymph nodes removed, and did six weeks of radiation.

    I can't answer your questions about the node that now looks clear. My cancer was on the right, so nowhere near my heart. These days, they do have techniques for radiating the left side so that they avoid the heart. This is a great question to ask your wife's radiation oncologist.

    Best wishes!

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  • Tom1981
    Tom1981 Member Posts: 52
    edited January 2017

    I filled it out to the best of my ability. I could get more information from her but then it brings the conversation back. I will update as I lock down more information. She is looking to do reconstruction. One of the positives she is taking away from this is she gets a free boob job and the people at work won't judge her for it. Personally I don't really care but I know she wants to get through this and feel as normal as possible to what she did before but at the same time do everything she can to prevent this from being something has to do this again. She went for mastectomy because it lowered recurrence by a bit. Double because they said they want to take the nipple on the bad side and she figured might as well do both and make them match. We've seen lots of doctors. She will be having something new done during surgery where they reconnect the lymph channels after lymphnode removal. I guess this is something very new. The oncologist also mentioned a new hormone drug trial he might get her on.

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

    Tom-

    The uncertainty is one of the hardest parts. But like Denise said, you're in very good hands at the Cleveland Clinic. Never be afraid to ask questions, regardless of if the answer will change the outcome; there is so much information involved in a cancer diagnosis, and one of the best ways you and your wife can stay on top of this is by asking questions.

    One study we have published on our main site may be of interest to you, and you may want to discuss the results with your doc. It's in regards to neoadjuvant chemo: http://www.breastcancer.org/research-news/chemo-re.... For some cancers, it has shown to reduce the risk of recurrence, and helsp doctors determine who may benefit from radiation following surgery.

    We are thinking of you both, and you have the support of this community!

    The Mods

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  • TectonicShift
    TectonicShift Member Posts: 752
    edited July 2020

    .

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  • Kathleen26
    Kathleen26 Member Posts: 210
    edited January 2017

    When you get neo-adjuvant chemo, as your wife has had, any pathology done during post-chemo surgery can only revise the stage upward (if say more nodes became involved during chemo), and not downward.

    It may seem paradoxical, but that is actually preferable, because staging determines treatment plan, and you want the most aggressive treatment possible. People get hung up on Stage because they think it determines whether they will live or die, but the purpose of it is to determine treatment.

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  • SSInUK
    SSInUK Member Posts: 245
    edited January 2017

    Tom - do be prepared that imaging can be gob smackingly inaccurate. What a surgeon and pathologist finds is OFTEN not what scans suggested. I say this because it can be a surprise. ER/PR cancers very rarely disappear with chemo. Nonetheless the prognosis for these cancers is good. I think what your onc is talking about is what mine described as the 'Swiss cheese' effect where cells die all around the tumour but the size of the 'tumour bed' remains the same - I think of it as the bomb crater with bits still smoking! Some peoples tumours shrink others go the Swiss cheese way. My onc was way more concerned about what was left in my nodes than in the breast. If her nodal disease has disappeared on pet that's a very good sign. But again they may stillfind low grade disease left that is non chemo responsive but not aggressive and more responsive to hormone therapy. But as the others say don't get hung up on stage. The picture is so much more complex. There are stage 4 ladies long term NED and stage 1 who recurr. She wants maximum treatment and she'll get it. Finally - lymph nodes near the heart. Are these Internal mammary nodes? - if so I have the same dx. If she is having diep reconstruction then dissection is definitely an option as they enter that area surgically to attach the blood supply to the flap of transferred flesh. Otherwise good radiotherapy can definitely target this area. Last - she looks like a good candidate for one of the Ibrance trials - PALLaS. Ask about it - it's a very good drug. All best. So much sympathy you poor things. You'll get through this and get your lovely wife back

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