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Wife just diagnosed

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Wife was just diagnossed last week. We have had Biopsy, MRI, and today another ultrasound. So far meeting with surgeons and plastic surgeons. It has been a little overwhelming. I believe she is in denial, and I am in a state of shock.

I try not to show it but I am scared and hurting myself. The thought of her going through all this surgery and pain scares me to death.

Work is not being as understanding as I would like and I have told them I will be at every appt and I do not care what they think about it. I keep being told it will be ok but to be honest it is really hard to think that way right now.

I need to be strong for her and I am trying very hard. I keep having worst case scenerio images in my mind and it takes me to a place I dont want to go.

Im scared and Im scared for her.

Any words of encouragement would help this morning.

Thanks for listening.

Comments

  • moderators
    moderators Posts: 8,290
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    @neverbethesame33 - Welcome to the community, though we wish it were for other reasons.

    It must be a tough time for you and your wife. It's okay to feel scared and overwhelmed, and you're an amazing husband for being there for your wife 💑

    Hopefully other members here will be able to offer you words of encouragement soon. Meanwhile, check out the following discussions we thought you might find helpful:

    Just Diagnosed? Start Here

    December 2023 Surgery? Gather here.

    Making Surgery Decisions? Start Here.

    Resources for Caregivers

    We hope this helps. Remember we're all here for you, so feel free to share how you feel or ask for advice whenever you need. We look forward to hearing more from you and your wife soon!

    The Mods

  • kaynotrealname
    kaynotrealname Member Posts: 422
    edited December 2023
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    Breast cancer sucks, no lie. It's horrible and traumatic and none of us get out unscathed. HOWEVER, it also one of the most curable cancers out there. The vast majority of people survive and go on to live out the rest of their life. So hang onto that as you continue through this minefield. Also, the point that you are both at right now, the information gathering point, is by far the hardest. It will calm down in your head once treatment starts and you get on with it. Joy does return. So know you won't feel like this forever. Hang in there and let us know if you have further questions about anything.

  • neverbethesame33
    neverbethesame33 Member Posts: 13
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    Thank you so much. I try not to be sad around her but i dont think I hide it well. Im praying we get some better news soo

  • nnguyen
    nnguyen Member Posts: 52
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    Hello,

    When you have the information, post the pathology (Estrogen positive/negative, Progesterone +/-, Her2 positive/negative, etc) of your wife's tumor, stage of her disease, and where is it.

    NNguyen (aka Linda's husband, aka Austin's dad)

  • neverbethesame33
    neverbethesame33 Member Posts: 13
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    I thought I just replied but it appears to have dissapeared

    Here are the biopsy resulfts. Note taht the biospy was 6mm not the tumor. The tumor is 8cm.

    MRI showed no lymphnode involvement but I know that can change. Ultrasound confirmed.

    inal Pathologic Diagnosis

    SUPPLEMENTAL REPORT (12/5/23)

    The information reported below in BOLD TYPE is in addition to that initially reported on 12/4/23. The original diagnosis is unaltered.

    A. LEFT BREAST MICROCALS, CORE BIOPSY:

    • DUCTAL CARCINOMA IN-SITU, CRIBRIFORM PATTERN, LOW GRADE NUCLE.
    • NEGATIVE FOR COMEDO NECROSIS.
    • MICROCALCIFICATIONS IDENTIFIED.
    • NO INVASIVE CARCINOMA IDENTIFIED.

    B. LEFT BREAST MASS, CORE BIOPSY:

    • PROCEDURE: CORE BIOPSY.
    • SPECIMEN LATERALITY: LEFT BREAST.
    • HISTOLOGIC TYPE: INVASIVE DUCTAL ADENOCARCINOMA.
    • SCARFF-BLOOM-RICHARDSON(NOTTINGHAM) HISTOLOGIC GRADE: 1/3.
    • GLANDULAR (ACINAR)/TUBULAR DIFFERENTIATION: SCORE 2.
    • NUCLEAR PLEOMORPHISM: SCORE 2.
    • MITOTIC RATE: SCORE 1.
    • TUMOR SIZE/LARGEST INVASIVE FOCUS IN THIS LIMITED BIOPSY SAMPLE (IN MM):

    6.0 MM.

    • DUCTAL CARCINOMA IN-SITU: PRESENT.
    • ARCHITECTURAL PATTERN: CRIBRIFORM.
    • NUCLEAR GRADE: LOW-GRADE.
    • NECROSIS: NOT IDENTIFIED.
    • LYMPHATIC AND/OR VASCULAR INVASION: NOT IDENTIFIED.
    • MICROCALCIFICATIONS: IDENTIFIED.
      ADDITIONAL FINDINGS: NO SIGNIFICANT OTHER FINDINGS.
    • BREAST BIOMARKER STUDIES: PENDING.inal Pathologic Diagnosis
    • SUPPLEMENTAL REPORT (12/5/23)
    • The information reported below in BOLD TYPE is in addition to that initially reported on 12/4/23. The original diagnosis is unaltered.
    • A. LEFT BREAST MICROCALS, CORE BIOPSY:
    • DUCTAL CARCINOMA IN-SITU, CRIBRIFORM PATTERN, LOW GRADE NUCLE.
    • NEGATIVE FOR COMEDO NECROSIS.
    • MICROCALCIFICATIONS IDENTIFIED.
    • NO INVASIVE CARCINOMA IDENTIFIED.
    • B. LEFT BREAST MASS, CORE BIOPSY:
    • PROCEDURE: CORE BIOPSY.
    • SPECIMEN LATERALITY: LEFT BREAST.
    • HISTOLOGIC TYPE: INVASIVE DUCTAL ADENOCARCINOMA.
    • SCARFF-BLOOM-RICHARDSON(NOTTINGHAM) HISTOLOGIC GRADE: 1/3.
    • GLANDULAR (ACINAR)/TUBULAR DIFFERENTIATION: SCORE 2.
    • NUCLEAR PLEOMORPHISM: SCORE 2.
    • MITOTIC RATE: SCORE 1.
    • TUMOR SIZE/LARGEST INVASIVE FOCUS IN THIS LIMITED BIOPSY SAMPLE (IN MM):
    • 6.0 MM.
    • DUCTAL CARCINOMA IN-SITU: PRESENT.
    • ARCHITECTURAL PATTERN: CRIBRIFORM.
    • NUCLEAR GRADE: LOW-GRADE.
    • NECROSIS: NOT IDENTIFIED.
    • LYMPHATIC AND/OR VASCULAR INVASION: NOT IDENTIFIED.
    • MICROCALCIFICATIONS: IDENTIFIED.
      ADDITIONAL FINDINGS: NO SIGNIFICANT OTHER FINDINGS.
    • BREAST BIOMARKER STUDIES: PENDING.

  • mswife
    mswife Member Posts: 67
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    That path report appears to be quite favourable (if there ever was such a thing with a diagnosis of cancer). Cribriform type is a slow-growing type of invasive ductal carcinoma and grade one also confers a less aggressive cancer.

    certainly pathology can change between a biopsy and full surgical specimen.

    will be interested to see the receptor info.

  • nnguyen
    nnguyen Member Posts: 52
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    Hello,

    Initial path report was on 12/5/23, but still no "breast biomarker studies" to date? Perhaps you should call the oncologist office?

    Also ask for all 3 tumor marker tests (Ca27.29, Ca15-3, CEA) before any surgery and after surgery but before any treatment. This would let you have some measure confidence of correlation between tumor volume and markers (one or all 3, Ca27.29 is similar to Ca15-3). They might (oncologist and insurance) push back and say markers are useful only for patients with met. Ask for it anyway and offer to pay if insurance won't.

    Manage to develop a positive relationship with oncologist, his staff, nurses, insurance coordinator, scheduler, etc.

    Best wishes.

  • moderators
    moderators Posts: 8,290
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    @neverbethesame33, we're thinking of you and your wife. Have you received any more information about her diagnosis?

    We're all here to help!

    —The Mods

  • neverbethesame33
    neverbethesame33 Member Posts: 13
    edited December 2023
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    Just more apptments. surgery is jan 10th


    Thank you for asking. i will update when we know something

  • neverbethesame33
    neverbethesame33 Member Posts: 13
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    Been struggling all weekend to come to terms with this. Wife has been complaining of back pain for a while and i am convinced it is related. considering her cancer is big and slow growing I feel it is very likely more advanced than we know yet.


    im trying not to worry but it is very hard. to say i am scared for her is an understatement. i have read so much and it all scares me to death.


    please pray for us

  • moderators
    moderators Posts: 8,290
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    We're all here for you, and you're not alone @neverbethesame33 💙

  • needs.a.nap
    needs.a.nap Member Posts: 195
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    Hello @neverbethesame33. I’m very sorry for all that you and your wife are dealing with. It’s so much information and emotion to process. I’ve been thinking of you. I appreciate you posting here and letting us all be a part of this difficult situation with you.

    I fully agree with @kaynotrealname who said “the information gathering point, is by far the hardest”. A lot of the information won’t be available until after surgery but it feels like you need all that information right away to make correct decisions and to plan your life accordingly. It’s such a whirlwind of doctor’s appointments and tests! Hang in there!!

    If I may share? From a wife’s perspective, having recently had a mastectomy … I never really worried about dying, because I didn’t feel sick or anything, but I knew I needed to deal with this, as unpleasant at it might be. I forced myself to not go there in my head. I was told that mine was early stage but there was enough going on (with both IDC and areas of DCIS) that a mastectomy was recommended. And although I was told they looked clear from the ultrasounds, I wasn’t convinced my lymph nodes were clear until that was confirmed after surgery (I had 6 removed). That was a big relief! It was just hard to believe my breast surgeon who said they looked fine on ultrasound until I had the actual pathology results, even though he’s very experienced and I do trust him. I know they can’t guarantee it hasn’t spread until they do surgery and confirm that the lymph nodes are clear. I hope that proves to be the case for your wife too!! It’s excellent that the MRI didn’t show anything with her lymph nodes. Is her surgery a mastectomy?

    My husband never told me how much he was worried (he admitted he was scared when I asked him after the fact) and I appreciated feeling his quiet strength as he was with me through it all. You being there with your wife is a HUGE support! I’m afraid I was a bit in my own private world during it all, on autopilot, so I wasn’t even noticing his fear. On a positive note, the surgery itself wasn’t painful and recovery also wasn’t painful. Not like you might imagine. Others said that and I couldn’t understand how that would be possible but it really wasn’t painful because I no longer had normal sensation in that whole area. The numbness was a blessing! I took pain meds for a couple of days and then took ibuprofen and acetaminophen and muscle relaxers. There was a measure of discomfort but all in all, it was very tolerable. I truly hope your wife also has minimal pain with her surgery!! Shortly after my surgery the nurse asked what my pain level was and I said 2. It never got higher, thankfully. Please don’t mind me rambling on and on. I know how much I read here before my surgery and I learned so much from the experiences of others, it was very helpful!

    If you have a chance, please let us know how you both are doing. I wish your wife all the best for a smooth surgery and recovery.

  • neverbethesame33
    neverbethesame33 Member Posts: 13
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    Thank you for your comment. Yes she is havjng a double masectomy. As for how she feels she is fatigued and had pain in her lower back, both are concerning for me and keep me up at night.

    She is being strong but has told me she is scared and worried. I try to be strong for her but some days i do break down. The other day shejust looked at me and told me she loved me and I broke down. I feel so weak when that happens and i appologized to her.

    I worry about the future and what it holds. i am more scared than any other time in my life. I pray for her constantly

  • needs.a.nap
    needs.a.nap Member Posts: 195
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    Hello @neverbethesame33. I think I can maybe relate to the fatigue, that was something I really struggled with in the months before being diagnosed and in the weeks up to surgery. Abnormal fatigue!! Having no energy left in the cells of your body, like a battery on 1% needing to be recharged but nothing recharged me. I had to rest and sleep a lot, I couldn’t push through, it was the worst fatigue I’ve ever had in my life! I was told it’s common and normal with cancer to have fatigue. It may be hard to have time to rest but that’s what your wife will need to allow herself to do. I noticed a nice improvement after surgery. I was surprised with how awake and alert I felt, often not even taking a nap! I still struggle occasionally but I think it’s for other reasons now.

    Has she asked her surgeon or oncologist about the fatigue and her lower back pain? I’m not sure how they would address fatigue but they should still know. The back pain could be completely unrelated to breast cancer, but they should also know what pain she is in. Lower back pain is not fun!

    Make sure you have lots of pillows to help your wife be comfy after surgery. I’m still sleeping with 6 … they help me be a bit propped up and to not roll over (I used to sleep on my stomach and sides always) and one tucked under my knees helps my lower back too. My husband took care of my drain every day after surgery. I couldn’t comfortably reach it and do it myself, it was too far back behind my arm. That was a BIG help! (Sorry it’s gross but she may want your help with hers.) I also sat on a stool in the shower at first. My sister-in-law helped me take my first one and I definitely needed the help. I was a bit weak and clumsy with my left arm. A double mastectomy will be much more to adjust to than my single one but it’s amazing what we can adjust to!

    I just want to say, I think you are a loving, caring husband with normal human emotions!! This is such an emotionally chaotic time for you. Expressing emotion is healthy and important. It may feel like weakness but I think it’s an appropriate response to what you are facing and trying to process! This is possibly the biggest trial you have both ever faced. Give yourself a lot of grace.

    P.S. Many of us are pleasantly surprised at the strength we didn’t think we had but it turns out we did!!

  • neverbethesame33
    neverbethesame33 Member Posts: 13
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    Thank you so much for the encouragement it is much appreciated. I love her so much, she is my person and if i lose her i will nevee be the same.

    I told her i will be there for her, she is worried i will no longer find her attractive. i told her i love her and not her breasts.

    Got a call from doc , her blood work looks good and calcium levels are normal. im hoping thats a good sign

  • moderators
    moderators Posts: 8,290
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    Sending warm thoughts to the both of you. I don't know if your wife would be interested, but we do have free Zoom meet-ups that have been quite a helpful source to many of our BCO members. She can come as frequently or as infrequently to the groups as she would like. We have the dates/times and registration info here:

    Sometimes hearing from others going through or who have gone through a similar trajectory can be particularly comforting in a way that is different than what the doctors can provide. Also it can be nice to have the intimacy of tone of voice and body language over Zoom. 🙂

    Warmly,
    The Mods

  • neverbethesame33
    neverbethesame33 Member Posts: 13
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    Thank you, i will let her know. She does not like to talk about it at all, wint wven talk to her family about it. I have become the single point of contact, researcher, appt keeper and wverything in between. But I know that talking to others that share the diagnosis is helpful.

  • moderators
    moderators Posts: 8,290
    edited January 2
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    Certainly understandable, @neverbethesame33. I can understand how difficult that is as someone that is a caregiver to someone with cancer. But it sounds like you're doing your best and a great source of support! Just remember it's important to make sure you find ways to get your emotional needs met as well. It's hard to caregive long-term without finding some way to refill your cup as well! ❤️

    Oftentimes there will be oncology social workers at the cancer treatment centers. They should be able to refer you to additional resources, such as local/online support groups for caregivers or one-on-one therapy. The support groups can be harder to find for caregivers locally, depending on where you're located though.

    I can definitely relate to the person I caregive for not wanting to speak about the cancer. Sometimes just mentioning it is enough, and if/when she is ready, she might reach out. I'm one of the facilitators for the groups though, and everyone always seems quite relieved after their first session attending group. 🙂

  • moderators
    moderators Posts: 8,290
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    Separately, we do have this thread (though no one has posted to it yet). Perhaps you would want to start it off and others will join on as they find it? It's for husbands/partners supporting their life partners with early stage breast cancer.

  • neverbethesame33
    neverbethesame33 Member Posts: 13
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    Update

    Wife made it out of surgery. It went pretty quick. She is in some pain but all is well. We have not met with oncologist again but did get a preliminary look at initial pathplogy.


    Feb 1st is our next appt.


    Surgeon did say something that did concern me. He stated that she would come to him for her yearly checkups and it would not be a mammogram any longer just a physical exam. I knew she would not have mamograms but figured she would need yearly mri. Am I wrong?


    Thoughts on path report?


    Final Pathologic Diagnosis

    (A). BREAST, RIGHT, SIMPLE MASTECTOMY:

    • ATYPICAL DUCTAL HYPERPLASIA, SINGLE FOCUS, 0.2 CM.
    • MARGINS: NEGATIVE.

    FIBROCYSTIC CHANGES.

    - SKELETAL MUSCLE: NOT IDENTIFIED

    (B). BREAST, LEFT, SIMPLE MASTECTOMY.

    • TUMOR TYPE: INVASIVE DUCTAL CARCINOMA.
    • TUMOR SIZE (INVASIVE COMPONENT): 35 MM.
    • SCARFF-BLOOM-RICHARDSON (NOTTINGHAM) HISTOLOGIC GRADE: 1 (WELL-DIFFERENTIATED).
    • NUCLEAR GRADE: 2.
    • GLANDULAR DIFFERENTIATION: 2.
    • MITOTIC ACTIVITY (8/10 HPF): 1.
    • MULTIFOCAL CARCINOMA (SAME QUADRANT): NOT IDENTIFIED.
    • MULTICENTRIC CARCINOMA (MULTIPLE QUADRANTS): NOT IDENTIFIED.
    • IN SITU COMPONENT: PRESENT, DUCTAL CARCINOMA IN SITU, LOW AND INTERMEDIATE NUCLEAR GRADE, SOLID AND CRIBRIFORM TYPES, INVOLVING AND SEPARATE FROM PAPILLARY LESIONS.
    • SIZE OF IN SITU COMPONENT: AT LEAST 90 MM
    • NECROSIS: PRESENT.
    • MARGINS: NEGATIVE
    • DISTANCE OF TUMOR TO CLOSEST MARGIN: DEEP (4 MM).
    • MICROCALCIFICATIONS: PRESENT, ASSOCIATED WITH INVASIVE AND IN SITU CARCINOMA.
    • SKELETAL MUSCLE: NOT IDENTIFIED.
    • LYMPHOVASCULAR INVASION: NOT IDENTIFIED.
    • BIOPSY SITE CHANGES WITH ASSOCIATED MARKER; FIBROCYSTIC CHANGES.
    • TREATMENT EFFECT IN BREAST: NOT IDENTIFIED
    • TREATMENT EFFECT IN LYMPH NODES: NOT IDENTIFIED
    • AXILLARY LYMPH NODES: NONE ADDITIONALLY SUBMITTED (SEE SPECIMEN C).
    • BREAST PANEL STUDIES (PERFORMED ON LEFT BREAST CORE BIOPSY P23-59122):
    • ESTROGEN RECEPTOR: POSITIVE
    • PROGESTERONE RECEPTOR: POSITIVE.
    • HER2/NEU: 2+/EQUIVOCAL; CISH NEGATIVE.

    (C). LYMPH NODES, LEFT AXILLARY SENTINEL, DISSECTION:

    - TWO LYMPH NODES NEGATIVE FOR METASTATIC CARCINOMA (2/2).

  • jrnj
    jrnj Member Posts: 407
    edited January 26
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    I know you were concerned it was large but the DCIS 9cm portion is pre cancer not really considered cancer. I had a 13 cm LCIS and 2.5 cm ILC. I had 2 impacted nodes and lymphovascular invasion. So really good news that she doesn’t have either. Regarding scans that really freaked me too. Mastectomy =no routine scans. You need to have a symptom. complain you have a new pain keep pushing drs and fighting insurance. Still doing it 4 years later. CTs are cheaper than MRI. Also bothered me that radiation was not automatic for mastectomy but it is for lumpectomy. But I got it. You are an amazing husband and support. I didn’t have that did it mostly on my own. I know how mentally traumatizing it can be. But the odds are on your side, hang in there.

  • neverbethesame33
    neverbethesame33 Member Posts: 13
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    Thank you!


    Wife tells me I am aweskme but I dont feel that way. Somedays I am a mess worrying a out her. She says I worry more than she does. I say WE have cancer not just her. She is my world and I would die without her.

    I dont feel we are out of the wooda but i do feel better.


    Thank you

  • jrnj
    jrnj Member Posts: 407
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    I did a ton of reading when going through it. They say a local reoccurrence is usually at the surface and you can feel it. And scans have a lot of false positives leading to anxiety and excess radiation. But I still don’t buy it, I think it’s about the money. But also My cancer is rarer and called sneaky because it doesn’t form lumps it forms sheets and is hard to detect. I was getting regular mammograms and they missed it for years. Was your wife getting yearly mammograms? I assume they sent it out for oncotype testing?

  • neverbethesame33
    neverbethesame33 Member Posts: 13
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    She was not getting her yearly , the only reason they caught it was my nagging her to do it… and guess what…

    I hope they did oncytype i called burse today to find out if they did. No call back yet

  • jrnj
    jrnj Member Posts: 407
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    I’m surprised they didn’t tell you if they sent it out for oncotype. Are you in America?

  • mswife
    mswife Member Posts: 67
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    That’s a pretty favorable path report, all things considered. Clear margins, no lymph vascular invasion and negative lymph nodes. Favorable (positive) receptors as well. Also grade 1 tumor which tends to be slower growing.

    i completely understand where you’re coming from as a partner - I am on here for my partner as well.

  • neverbethesame33
    neverbethesame33 Member Posts: 13
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    For some reason they wont tell us on phone, only in person. yes america

    very frustrating

  • jrnj
    jrnj Member Posts: 407
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    they Probably will send it. It takes several weeks to get results. The waiting is the hardest part. Having a defined plan brings more peace and mental stability. Hang in there.

  • mswife
    mswife Member Posts: 67
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    There’s a Nomogram for that - not sure how people feel about these, obviously it’s important to remember that these are estimates rather than rules.