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Topic: Wife just diagnosed...a few questions

Forum: Caring for Someone with Breast cancer —

A place to share your struggles and concerns about supporting and caring for a person you love diagnosed with breast cancer with others who understand.

Posted on: Jun 13, 2019 04:21PM

MattD77 wrote:

My wife is 38. She was just diagnosed with ductal breast cancer 4.5-6cm, stage 3, ER +5%, PR +2%, Her2 negative, grade 3, ki67 100%, showing neroendocrine features. This bugger is growing like mad and may have grown a couple of cm just in the last two weeks. She is about to get a port put in and start adramycin and I think Cytoxin(?) on weds of next week. They are wanting to do chemo first to shrink the size for better margins. The oncologist said that if she is not BRCA positive that a mastectomy may not be the best treatment. Preliminary the treatment plan seems to be aggressive chemo, surgery, radiation, and preventative measures yet to be defined. My wife has talked about a double mastectomy and maybe even a preventive hysterectomy. We meet with a surgeon sometime next week.

1. The oncologist is wanting to treat this as triple negative. Does anyone have experience or information on low positives being treated as triple negative? I would ask this on the triple negative forum but I don't want to be a dude posing questions by proxy in a forum meant for those actually battling this. I am trying to wrap my head around the plan for this cancer and I am having a hard time with is this triple negative or is this ER and PR positive? If it is positive then maybe other treatments can be included for prevention. If it is negative then it looks like hoping chemo is effective is the best bet. Would a preventive hysterectomy do any good with low positives?

2. Any general advice from other husbands that have been through this with their wives? What can I do to make this process easier for her, myself and the kids? I have no idea how to prepare for chemo. I get the impression that everyone is different but dancing with the Red Devil is no fun. Has anyone excersized on chemo? Any recommendations on diet? She lost 50 lbs on keto and she was on keto when she was diagnosed, so I highly doubt the effectiveness of keto in this situation.

3. Any advice for dealing with the kids? We have a 13, 9, and 6 year old. The 13 year old knows but is internalizing this and does not talk about it. I don't know what the 9 year old and 6 year old know or think about it. The 6 year old often talks about her mother and I dying...even prior to the diagnosis. I don't know why. She just seems to be having some early onset existential crisis. I am not sure that I should bring this up to her.

4. I am not particularly religious anymore, but my wife is. This diagnosis hardly helps with my faith. I have not been attending church with her for awhile now.Should I go to church with her? I just want the focus to be on my wife. Should I go to church with her as support?

I am all in on this and ready to do what I can even though I cannot be in the trenches. My heart aches for her that she got this diagnosis. It kind of blew me away and I am kind of on an emotional roller coaster with metabolizing these unfamiliar feelings of being vulnerable and of having lost control. I can only imagine what she is going through. I also have a hard time owning any other possibility other than complete and utter success. I know there is risk to everything but I feel like if we control what little bit that we can control that medical science and changing technology will see us through over the next decade or so. Am I wrong to dismiss any chance that this will go any other way but a positive outcome? I know that not everyone has a happy story and my heart aches for those that have so many more challenges thrown at them but I feel like with her, her diagnosis, and the support that she has that she will overcome this.



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Jun 13, 2019 04:45PM Ingerp wrote:

1. It seems most ER+/PR+ percentages I see are really high--like >90%. BUT PLEASE DO NOT HESITATE TO POST ON THE TRIPLE NEGATIVE FORUMS. The lovely ladies there will be happy to answer any questions you have.

2. To make it easier in general--take on her home responsibilities (shopping/cooking/cleaning). Exercise--let her energy level be her guide. Fatigue is not something you can muscle, like simply being tired/low energy. Diet--PROTEIN. I have beat this drum often, but I *know* it helped me greatly through chemo. I ate red meat 5-6 times a week, plus eggs every day, plus a protein shake every day. My blood levels stayed really good throughout. My MO told me I was the only patient she'd seen who was actually making blood on chemo. Also, many things will taste funny to her through chemo. For better or worse, it seems like sweets still taste the same. I ate ice cream every day, and it's not normally even in the house. Conventional wisdom is she should treat herself through this process food-wise. Other than the protein, I wouldn't worry too much about what she eats. (Between the sweets and steroids many of us get as part of the pre-meds, it's common to gain weight on chemo. There's time to worry about weight when she's finished.)

3. I told my <older> kids after I knew the dx/tx plan, and I always said this was just a blip that I'd get through and then I'd be fine. As with everything you talk to your kids about, if you treat it like a tragedy, they'll view it as that. If you say hey this isn't going to be fun for a while but we're going to get through it, they'll likely be okay. It's not a bad thing for them to pitch in and take care of mom a bit.

4. Does she want you to? Would she see it as support? Or bluffing your way through something you don't really believe in? Again, let her be the guide.

My personal feelings--optimism always. Absolutely no reason to assume the worst outcome.

Dx 3/11/2016, DCIS, Left, 6cm+, Stage 0, Grade 3, ER-/PR- Surgery 3/22/2016 Lumpectomy Surgery 4/19/2016 Lumpectomy: Left Radiation Therapy 5/17/2016 Whole-breast: Breast Dx 3/2/2018, IDC, Right, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2+ (FISH) Surgery 3/12/2018 Lumpectomy: Right; Lymph node removal: Sentinel Chemotherapy 5/17/2018 Taxol (paclitaxel) Targeted Therapy 5/17/2018 Herceptin (trastuzumab) Radiation Therapy 8/19/2018 Whole-breast: Breast
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Jun 13, 2019 05:05PM Beesy_The_Other_One wrote:

Matt,

I'm so sorry to be welcoming you here because of the reason you are here, but you have found a place of support. The women and men here truly understand what you're living through. I can't speak to all your questions, but others will chime in. What I do know is that your wife's tumors are weakly ER/PR, and when combined with HER2 negativity, oncologists treat such tumors as triple negative breast cancer (TNBC). Because of your wife's age, the size of the tumor and those stats, this is a wise course. You're in the worst part--you'll read this over and over on this site. We've all been through it--the waiting and not knowing, not understanding what's to come. Believe it or not, things get better when she actually starts treatment, because at least you're finally doing something that feels like you're going in the right direction. One piece of great news: aggressive tumors are vulnerable to chemo and generally respond!

You are right to think positively about the outcome--no question about it! And trust me, she'll do much better throughout treatment with you at her side loving her all the way.

Beesy

1997: Phyllodes, R breast. 2018: IDC, L breast. TCHP, BMX, Radiation, Nerlynx. Dx 8/20/2018, IDC, Left, Grade 3, 0/1 nodes, ER-/PR-, HER2+ (IHC)
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Jun 13, 2019 05:44PM Beaverntx wrote:

Matt, the most important thing my husband did, right after we got the diagnosis was saying, "We are in this together" and meaning it. From your message, it sounds like you are already there. Continue to let her know you care, give her the freedom to rest if she has days when she feels lousy, and encourage her to let you know when and what help she needs and would appreciate. Best wishes as you and your family continue through this process. Feel free to post on threads that relate to your situation. You will find support on them.

Diagnosed at age 77-- Oncotype 17, dealing with this bump in the road of life!!🎆 Dx 1/24/2018, IDC, Right, 2cm, Stage IB, Grade 3, 0/9 nodes, ER+/PR+, HER2- (IHC) Dx 1/30/2018, DCIS, Right, <1cm, Stage 0 Surgery 1/30/2018 Lumpectomy: Right; Lymph node removal: Right, Sentinel Radiation Therapy 3/11/2018 Whole-breast: Breast Surgery 6/15/2018 Prophylactic ovary removal Hormonal Therapy 6/19/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jun 13, 2019 05:48PM Lexica wrote:

Hi, MattD (my husband is a 'MattD79 :)' - sorry to hear about your wife's diagnosis, but I think you will find at least some comfort in the amazing support of the people on these forums.

With regards to the triple negative vs. hormone positive - I would check in on the triple negative boards, but also keep in mind that sometimes the receptor status will change a bit with neoadjuvant chemo and the post surgery pathology is really what counts. I was originally PR- (biopsy) and ended up being >80% PR+ after chemo.

Also, exercise is GOOD if she can handle it. It might help if you took walks or something as a family - I really enjoyed that during treatment.

Lastly, but importantly, the kids. I can't help with the older ones - mine were 2 and 4 when I went through treatment. We let them know I'd lose my hair and it would grow back - mainly just prepared them for the things that were noticeable. We also involved them in helping around the house - giving them something to do. I know there are also books out there for kids (Mom Has Cancer is one of them - not sure if it is age appropriate or not - my kids weren't quite ready for that). Additionally, most cancer treatment centers have social workers that are there to help with this kind of thing and they should be available for families as well, not just for the person undergoing treatment. That might be an additional resource.

I know my husband's biggest frustration was what you already mentioned - you can't do anything about the situation - it's out of your control. But you can be there, and you can help just by doing that. Also, make sure you are talking to someone if you need it. Take care of yourself too!

Diagnosed at 34. 2 years of Ibrance via PALLAS trial (ends 4/2020) Dx 7/2017, IDC, Left, Stage IIIC, Grade 2, ER+/PR+, HER2- (IHC) Surgery 12/15/2017 Lymph node removal: Sentinel; Mastectomy: Left; Prophylactic mastectomy: Right Dx 12/27/2017, DCIS/IDC, Left, 6cm+, Stage IIIA, Grade 3, 5/11 nodes, ER+/PR+, HER2- (IHC) Radiation Therapy 1/16/2018 Whole-breast: Breast, Lymph nodes, Chest wall Chemotherapy AC + T (Taxol) Hormonal Therapy Aromasin (exemestane)
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Jun 13, 2019 06:33PM JaBoo wrote:

I cannot help with the treatment questions... I only can give some insight in general. I was 38 when diagnosed last year, with kids 4 and 7 years old.

First the kids - I believe they are not blind. Kids especially have a radar to sense things. They are also very sensitive to lying. ("Everything is OK.") We have told our kids very early on, what is going on. We told them everything and also used all the nasty words like tumor and cancer. But we omitted the risk of me dying, we just said the disease is deadly if left untreated, just like many other diseases and stressed the treatment strenght. We spoke about the strong treatment and wonders of medicine and told them the treatment would make me weak and hairless, which is a good thing, because it shows the treatment is working. I consulted this with a psychologist - there is a help-line for breast cancer patients in my country, with a psychologist and oncologist to be reached. This helped me enourmously, I presume there must be some quick help in the US too. I knew we had to tell them the truth and the psychologist stressed this many times.

As for your wife - please show her you are there for her. I know you are, since you ask here, but a woman in this crappy situation is very very uncertain. Will he stay? Will he leave us? Will he want to leave with the kids? Will he see me as a woman? Will I be just a sick person for him? I will be cut, poisoned, burned - will he have any interest in me? Will I be repulsive to him? Just hug her, hold her, show her you are there for her and for your kids..

A lot of her duties will have to be done by somebody else. But not neccessarily. Maybe she will want to stay active and do her chores to feel a bit normal. Bit she must know there is somebody to do it in case she is too unwell.

The red devil is no fun, but before 40,we are young. If your wife has no other health issues, she should be mostly OK. They give good meds against nausea.... I was nauseous, but never once vomited and managed to hold my weight (I lose weight under stress). I went for long forest walks starting a few days after each treatment. It helps enourmously.

Be there for her and your family will be fine, you'll see. The chemo seems so long, but it goes by very quickly.


dx at 38 Dx 5/22/2018, IDC, Left, 2cm, Grade 3, 1/3 nodes, ER+/PR+, HER2+ (FISH) Surgery 6/14/2018 Lumpectomy: Left; Lymph node removal: Sentinel Surgery 6/19/2018 Lumpectomy: Left Chemotherapy 7/15/2018 AC + T (Taxol) Hormonal Therapy 7/16/2018 Zoladex (goserelin) Targeted Therapy 9/12/2018 Herceptin (trastuzumab) Hormonal Therapy 1/10/2019 Aromasin (exemestane) Surgery 1/21/2019 Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Hormonal Therapy 6/26/2019 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jun 13, 2019 08:02PM B-A-P wrote:

So I'm not TN so I don't have advice on treatment options. What I can say is that be there for her ( and looks like you already are ), listen to her fears, if she wants to make lifestyle changes, even if they sound whacky, let her. I made a lot of changes and my husband was great about most of them which really helped. Some things I wanted to try, he wasn't supportive and it made me feel not that great because the changes I made, made me feel like I was being an active participant in my healing. It felt like I was doing something instead of sitting back and doing nothing else besides treatment. For some, that's what they want to do and I fully support that. Everyones journey is different. My husband was great though I have to say. He heard me spout off the same fears constantly, and he listened and loved and it made all the difference.

I exercised through treatment. I did not exercise the first few days after chemo as I had very little energy, but once the chemo wore off, I was exercising 3-4 times a week. I did youtube exercises, low impact, and nothing too strenuous. My motto is moving a little, is better than not at all. There's lots of evidence to support the fact that exercise helps withstand treatment better, can help prevent reoccurrence ( I think by like 40 %), and help with the cancer related fatigue. If she can do it, why not? Walking is great as well. Follow her lead :)

As for the kids, I found it to be the hardest part. My son was 3 when I was diagnosed last year. We didn't explain much except that I was sick and needed help and patience . He does tell me now that he hopes my boobies aren't sick anymore and he's scared about getting cuts on his chest. But he is very resilient. Your kids are a bit older and so they may have an idea of what cancer is and what could happen. I would give them the info as you have it and reassure them that mommy is going to be okay. There's no reason right now to think otherwise. It's scary.. so scary, but kids are resilient. Openly communicate and reassure them that they can ask questions if they need to.

My naturopath put me on Keto as there are some studies that it can help cancer. However, I don't think it's the magic key. The Keto she out me on wasn't the eat lots of meat, cheese, bacon ect. It was lots of non starchy veggies, low sugar fruits, lots of healthy fats , low carb, and mod protein. No red meat or dairy. I did lose a bit of weight but I was already very small, so that was a bit difficult, but I still manage to do somewhat of a Keto diet but not so strict anymore. I think the key, especially with breast cancer is keeping blood sugars stable, and IGF1 low.

Any other questions feel free to ask :)

Dx 8/17/2018, IDC, Left, Stage IV, metastasized to liver, ER+/PR+, HER2- (FISH) Chemotherapy 9/18/2018 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil) Surgery 2/26/2019 Mastectomy: Left, Right Radiation Therapy 4/29/2019 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy Femara (letrozole) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery Prophylactic ovary removal
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Jun 13, 2019 09:58PM KSteve wrote:

MattD77 - I am so sorry you find yourself here. I can't answer most of your questions, but just wanted you to know that as a triple negative survivor who regularly visits the "Calling all TNs" board, I would highly recommend you post there. I know there have been several "low positive" women that have been treated as TN. Also, there are a couple husbands that post there too. It's an amazing board filled with great support. Also wanted to mention that I am approaching 9 years from diagnosis and while I wasn't as young as your wife (I was 44), I was still considered young to be diagnosed. Mine grew overnight too. But the good thing is that with chemo first, she will actually be able to feel her tumor reduce in size as she progresses through chemo. I know this seems like a nightmare right now, but you will come out the other side. Just take it one day at a time and don't hesitate to ask questions along the way.

Hugs,

Kathy

Dx 9/3/2010, IDC, 6cm+, Stage IIIA, Grade 3, 3/15 nodes, ER-/PR-, HER2- Chemotherapy 9/21/2010 AC + T (Taxol) Surgery 1/8/2011 Lymph node removal: Right; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Radiation Therapy 3/15/2011 Breast, Lymph nodes Surgery 6/1/2011 Reconstruction (left); Reconstruction (right) Surgery 12/6/2011 Reconstruction (left): Nipple reconstruction; Reconstruction (right): Nipple reconstruction Surgery 1/23/2014 Reconstruction (right): Latissimus dorsi flap, Tissue expander placement Surgery 4/4/2014 Reconstruction (left); Reconstruction (right)
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Jun 13, 2019 10:17PM - edited Jun 13, 2019 10:18PM by moth

MattD77 - I was about 10% ER+ on one pathology report, closer to 5% on another and ended up being treated as a triple neg. Oncotype DX was useful in that it gives another piece of the puzzle and has a different way of looking at hormone receptors.

Sorry you find yourself here. I think if you hit it fast and hard that's about all we can do.

I think you might want to reach out to your cancer center and see what supports they have for families, as many have sessions and support groups for families, including for children of cancer patients. I'd honestly make this a priority - to get some outside therapists involved - because IMO, outside, experienced people can keep things stable. Even if things *appear* fine, partners and kids often are really not fine and having that established relationship with a counsellor is a good safety net. The hardest parts may be months or years from now, so for everyone, think long term about building healthy coping habits, which includes reaching out for help and being proactive about psychological health.

I'm an atheist in a family of atheists so I'm not sure about your other question but I think I'd encourage you to just ask your wife what she wants. She might want you there or she might not .... and you be honest too about whether if you go, you're just going out of obligation and if she's ok with that. She might just say, "it's ok, honey, this is my thing & you support me in other ways".

My kids are living at home but are in college so I didn't have to go through this while really worrying about their physical needs - & in fact, they did a lot to make our lives easy.

For you, I think the most important thing will be to line up help and supports and *plan* to essentially single parent & run the house on your own. If your wife ends up tolerating her treatments well and is able to do lots of things, then great. But if not, if she's feeling very tired or unwell, you will already be prepared about how you will take care of her, the house & the kids all on your own - all while presumably working outside the home. Figuring it out later will be a pita so again, sit down now & think months ahead and think how you can streamline your life.

Make meal plans, get grocery delivery, (do you need another freezer?), when is laundry day and who will do it, who is taking care of home/garden maintenance, who is driving the kids, who is making lunches, who is supervising their homework etc etc etc. Plan it all out. And remember, it's a marathon, not a sprint. Plan it out, pace it out. Frantic levels of juggling 100 tasks/errands etc in the air are sustainable for a few weeks but not for months. So be realistic, ask for help, budget out paying for services, and do things in such a way that you have time each day to enjoy each others' company.

Hang in there. Sending you best wishes

Seriously???? “Sometimes the future changes quickly and completely and we’re left with only the choice of what to do next." nevertellmetheodds2017.tumblr.... Dx 12/2017, IDC, Left, 1cm, Stage IA, Grade 3, 0/5 nodes, ER-/PR-, HER2- (IHC) Surgery 12/11/2017 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 2/13/2018 AC + T (Taxol) Radiation Therapy 8/12/2018 Whole-breast: Breast Dx 2/2020, IDC, Stage IV, metastasized to liver/lungs, Grade 3, ER-/PR-, HER2- Chemotherapy 3/17/2020 Taxol (paclitaxel) Immunotherapy 3/18/2020 Tecentriq (atezolizumab)
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Jun 15, 2019 02:22PM edwards750 wrote:

Matt - I’m sorry you find yourself here too but I echo the posts of others this is a great website to ask questions, vent or just “talk.” No one knows better than we do what you and your wife are going through. BC is an insidious disease but also one that has produced more favorable outcomes than other cancers over the years. Much has been done in research and improved treatments. It’s certainly not the death sentence it used to be.

My mother had BC in her late 60s which was many years ago. At that time MX was the surgery of choice. There weren’t many options. Now there are multiple options in meds as well.

My husband went to appointments with me and of course was with me when I had my surgery which was a lumpectomy. He is quiet and I’m the polar opposite but he was what I needed to keep me as calm as possible. I didn’t freak out and in fact I kept my game face on for my kids but I was still my usual anxious self. My youngest son took it the hardest. He was in his 20s at the time. He has friends who have siblings who have cancer and has several friends who lost their mothers to cancer so he was understandably scared.

There is plenty of reason to be optimistic. I will be 8 years out this August. I had IDC, Stage 1b, Grade 1. I had a lumpectomy and 33 radiation treatments. I took Tamoxifen for 5 years.

There are a lot of success stories on this website.

My advice would be just be there for her. I’m not good at lack of a control over a situation so this DX was especially difficult for me. Your children are younger than mine were but I would do my best not to scare them especially at this juncture. They know Mommy is sick. That’s enough to frighten them. Share with them when you know something definitive and even then maybe ask advice about what exactly to say.

Also reach out for support and help from friends and family. They are vital at a time like this.

Keep the faith and keep us posted.

Diane

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Jun 15, 2019 03:03PM illimae wrote:

Matt,

1. Yes, I think she’d be considered TN with such low ER/PR % (makes me wonder what driving the rapid growth though) and the chemo, surgery, rads proposed is standard protocol.

2. For chemo, I’d put together a chemo bag for snacks, book/iPad, etc. For food, healthy is best but sometimes food tastes so bad on chemo that you just eat what you can (some days all I could handle was ramen noodles). People do exercise during chemo but not many. I got 8,000 steps/day and did a 5k during chemo but it’s unusual. I don’t know if I was just lucky or is exercise prevented fatigue (theory, studies being done on this topic) or both.

3. No advice other than age appropriate honesty is best.

4. I would ask if she wants you to go. She may enjoy the moment on her own.

General advise: Be patient. She may be withdrawn at times, or angry, in pain, many others. Sudden menopause is not easy and thoughts of doom will get in her head. She may not tell you but at some point she’ll wonder who will raise the kids if it progresses and she dies, it can’t be helped and it’s tough to think about. She doesn’t always have to be positive but it does help. Focus on getting through this and things to look forward too, maybe a post treatment vacation. Good luck!

Diagnosed at 41 Stage IV De Novo Dx 11/16/2016, IDC, Left, 5cm, Stage IV, metastasized to bone, Grade 3, 3/13 nodes, ER+/PR-, HER2+ (IHC) Chemotherapy 1/2/2017 Abraxane (albumin-bound or nab-paclitaxel) Targeted Therapy 1/2/2017 Herceptin (trastuzumab) Targeted Therapy 1/2/2017 Perjeta (pertuzumab) Surgery 6/26/2017 Lumpectomy: Left; Lymph node removal: Underarm/Axillary Radiation Therapy 8/10/2017 Breast, Lymph nodes Dx 10/5/2017, IDC, Left, 5cm, Stage IV, metastasized to brain, Grade 3, 3/13 nodes, ER+, HER2+ (IHC) Radiation Therapy 10/20/2017 External: Brain Radiation Therapy 4/18/2018 External: Brain Radiation Therapy 5/23/2019 External: Brain Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jun 15, 2019 03:46PM DiagnosisDisruption wrote:

Matt,

Ride the wave, is the best advice I can give. Your wife will be an emotional mess with the chemo, steroids, diagnosis and this flipping roller coaster ride. My husband's role was just to go with the flow even when the flow was against him (as it often was). He went to every appointment and listened and asked questions (but the rule was, only after I asked all of mine). In all honesty, I (the cancer patient) was very self absorbed, yet I knew that he had a harder part in this whole mess than I did. I was getting the knife and the rays and the poison, but I felt I had it easier than him.

Accept help. Other people want to bless you with casseroles and offers to take care of the kids. Take them up on it. You need to be sane too! If my husband would have fallen apart, things would have been miserable!

Dx 12/8/2017, IDC, Left, 2cm, Stage IIA, Grade 2, 0/2 nodes, ER+/PR+, HER2+ Targeted Therapy 1/23/2018 Herceptin (trastuzumab) Targeted Therapy 1/23/2018 Perjeta (pertuzumab) Chemotherapy 1/23/2018 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 5/22/2018 Lumpectomy: Left Surgery 6/12/2018 Lumpectomy: Left Radiation Therapy 7/18/2018 Whole-breast: Breast Hormonal Therapy 10/10/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jun 15, 2019 10:46PM - edited Jun 16, 2019 02:59AM by HappyAnyway

Hi MattD77. I'm 44, married and have three daughters 8, 15 and 18. I have triple negative bc. I am happy to say that, after only four rounds of AC, I cannot feel the lump. I will have twelve weekly Taxol treatments followed by surgery, radiation and reconstruction. Your wife may not need all of the treatments that I am having, but it is a possibility. My oncologist wants me to be aggressive with treatment because of my age. The ultimate decision is mine.

Adriamycin (red devil, for me) sucked. I am not going to lie. First off, let me say, and you will hear it often, that everyone experiences different side effects. My worst side effect was low white blood count (a week after each treatment) which resulted in me avoiding public places. I also experienced nail changes, GI issues and fatigue. Nausea was controlled by Zofran. Like I said before, I can't feel the lump anymore.

My husband and girls have picked up a lot of my slack around the house. It would be great if they did it without arguing, but it is getting done. Although, I would be embarrassed if anyone were to stop by unexpectedly. I am just too tired to do it myself due to low hemoglobin. I think, because I don't complain, my family does not fully understand that I am not well. When I feel like I am being dismissed, I remind them.

In the beginning, I went to the gym. Once my low wbc started, I stopped. I really have to listen to my body (which you will also hear frequently). I couldn't work out now if I wanted to.

I ate very well prior to my diagnosis. I didn't eat gluten, sweets or processed foods. My diet is shot. I wish it wasn't so. I will get back on track after all of this.

I am extremely open with my girls. My oldest is going to college to be a medical assistant. She is my chemo buddy. I prefer her over my husband in that regard. My middle daughter doesn't really ask questions, and that's alright. I give her vague updates on how I'm doing. Little bit asks lots of questions and I give her honest, age appropriate answers. Ask her about the reconstruction that I want and she will tell you belly boobs! She's a trip.

I would ask your wife if she wants you to go to church with her. I am a believer, but don't feel like this is anything that was done to me. Crap happens.

Keep having fun! On days when your wife feels bad or can't get out of the house, play cards, video games or whatever you can together.

You are a sweet, concerned, caring husband. You will all work together to get through this. My family is closer now than before.

Feel free to ask me anything.

Best to your wife and entire family.

Edited to add: there is a Cancer Support Community in the city where I live. It's amazing. They provide free counseling to the cancer patient and their entire family. They also offer yoga, tai chi and general fitness classes. They offer so much more.


❤️ Dx 4/10/2019, IDC, Right, 3cm, Stage IIB, Grade 3, ER-/PR-, HER2- (IHC) Chemotherapy 4/25/2019 AC Chemotherapy 6/20/2019 Taxol (paclitaxel) Chemotherapy 7/18/2019 Carboplatin (Paraplatin) Surgery 10/29/2019 Lymph node removal: Sentinel; Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 12/1/2019 Xeloda (capecitabine) Immunotherapy 1/16/2020 Radiation Therapy 6/7/2020 Whole-breast
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Jun 16, 2019 10:28AM Traveltext wrote:

I'm a guy who went through neoadjuvant treatment for an aggressive tumor and I'm fine five years later. So much good advice here that I'll only say one thing: Dont have preconceived notions about any stage or phase of your wife's treatment, since we're all unique.

Hang in there, plenty of people have come through this and are not just surviving, but thriving.


NED breast and prostate cancer. More on Male BC

Dx 03/14, IBC, Lgth. 2cm, Stge IIIB, Gde 2B, ER+/PR+, HER2- ; FEC x3, Taxol x3; Mx & 2/23 nodes; Rads x 33; now on tamoxofin.

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Jun 16, 2019 02:06PM GraceB1 wrote:

My initial biopsy also showed neuroendocrine features.A primary breast net (neuroenrocrine tumor) cancer is very rare. Have they tested to make sure it is not a met from elsewhere?

Grace B I'm just special - primary neuroendocrine, less than .001% of all breast cancers. Start each day with gratitude. Dx 6/10/2013, Right, 6cm+, Stage IIIA, Grade 2, 2/11 nodes, ER+/PR+, HER2+ (FISH) Chemotherapy 7/11/2013 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 1/7/2014 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right Targeted Therapy 2/11/2014 Herceptin (trastuzumab) Radiation Therapy 3/3/2014 Breast, Lymph nodes Hormonal Therapy 5/17/2014 Arimidex (anastrozole) Dx 1/29/2020, Right, <1cm, Stage IA, ER+/PR-, HER2- Hormonal Therapy Femara (letrozole)
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Jun 17, 2019 03:33PM MattD77 wrote:

Thank you for the awesome advice and for sharing some of your personal experiences.

I will update this thread for other spouses from time to time.

The oncologist said that they will treat is TNBC and that they "will not go looking for any neuroendocrine tumors". They also do not seem to be concerned about it being mets from some place else. Nothing has shown up on the regional scans that they have done.

I feel bad for my kids, their summer is kind of blown. We live in Texas and most of our family is in California. There is no one to take the kids out to do stuff.

I have no issue taking over the housework. It is actually gives me something to do to keep my mind off of things. It also gives me an opportunity to change up some of the dynamics. The kids had their run of the house and now I can ease them into being more responsible and a bit more independent. I like cooking so I have that covered. My wife has everything she needs as far as bags, medications, and support items. She now has her own dedicated restroom that I will make sure stays spotless.

I am worried about her diet. There was some great advice above but anymore would be appreciated. She already has low blood cell count and she starts chemo on weds. She had to take iron during pregnancies. She wants to eat less meat but I kind of feel like calories, fats, and red meat may be far more beneficial during this period.

She cut her hair short and it really looks good.

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Jun 17, 2019 03:51PM edj3 wrote:

MattD77 I'm not a big meat eater; it doesn't really agree with me at the best of times and cancer isn't the best of times.

I eat a lot of beans to keep my calorie count up and boost my protein intake. Would that be food that would appeal to her?

Tried the tamoxifen, no thanks. Dx 4/9/2019, IDC, Left, <1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- (IHC) Surgery 5/5/2019 Lumpectomy; Lymph node removal: Sentinel Dx 5/6/2019, LCIS, Left, <1cm, 0/1 nodes Radiation Therapy 6/2/2019 Whole-breast: Breast Hormonal Therapy 9/22/2019 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jun 27, 2019 06:17PM RadagastRabbit wrote:

Hi Matt, some suggestions for diet. Peanut butter, cottage cheese, breakfast cassarole with eggs, red meat -homemade burgers, tacos, chicken burritos. Protein heavy.Doesn’t sound the healthiest but I found myself needing the calories, especially during the AC part when I wasn’t nauseous I was starving all the time and eating all the time, didn’t gain a single pound even with ice cream almost every night. I felt so much better when I had meat in me everyday. Having a favorite meal often helped with morale and things feeling “normal” when things were rough.

The biggest obstacle I found while in chemo was keeping mind occupied/busy and dealing with Boredom when white counts were low after every single treatment in the beginning, it can get lonely and frustrating being tired, having nothing to do and being burnt out on tv. The drudgery feeling of the weekly treatments afterwards was also hard. Having regular company (precautions taken) and planning little excursions alone together and with the kids as she is able will help her deal with the mental aspect of all this which is one of toughest parts besides the physical.

Always pleased to see a husband on here concerned and advocating for their wife, you being a team with her will help her. Having a second pair of eyes and ears helps so much when it seems treatments and terminology are being thrown about so quickly. All the best to your wife and you as you walk this with her :)

Mets @ Rads planning. Mets to Pelvis, Femurs, Shoulders, Ribs, T. Spine, L. Spine, Sternum, Sacrum/SI Joints. MyRisk neg. KEAP1 "Courage of the heart is very rare, there's a power when its there" 37yrs old @ IV DX. lifeandirises.home.blog/ Dx 7/30/2018, IDC, Right, 4cm, Stage IIB, Grade 2, ER+/PR+, HER2- Chemotherapy 9/26/2018 AC + T (Taxol) Hormonal Therapy 9/26/2018 Zoladex (goserelin) Dx 4/19/2019, IDC, Right, 3cm, Stage IIB, Grade 2, 5/16 nodes, ER+/PR+, HER2- (IHC) Surgery 4/19/2019 Lymph node removal: Right, Sentinel, Underarm/Axillary; Mastectomy: Right Hormonal Therapy 5/13/2019 Zoladex (goserelin) Dx 5/17/2019, IDC, Right, Stage IV, metastasized to bone, ER+/PR+, HER2- (IHC) Surgery 10/1/2019 Prophylactic ovary removal Targeted Therapy Ibrance (palbociclib) Hormonal Therapy Aromasin (exemestane)
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Jun 27, 2019 07:06PM christibcs wrote:

1- Ask your oncologist and specialists as many questions as you can. Write them down and bring them with you when you meet. Don't ever feel like you cannot ask any question. They should be able to explain to you why they are choosing the treatment path that they did. Make sure you are comfortable with your doctor. I was not comfortable with the first oncologist I met with and switched to another. I was so glad I did.

2- My husband said we are in this together. He was by my side for every appointment and treatment (which is not always possible). He understood the fatigue and loss of strength, and chemo brain. He did whatever he could to make me comfortable and not feel stressed that something that I ordinarily did was taken care. He helped to keep the house very clean, which is important during chemo.

3- I exercised at the level my body let me. I tried every day. Some days I just couldn't. Even small walks can make a difference.

4- Diet. Protein at every meal. Mixed nuts are great for snacking, or a hard-boiled egg, cottage cheese (with or without fruit), yogurt (whole fat Greek with fresh fruit, or honey), and mixed (roasted) nuts. Sometimes I ate a piece of fruit or I drank a mini Mott's Garden Cocktail (vegetable juice) or a small glass of smoothie - different ones, but a green one that had spirulina and kelp was my main one. The National Cancer Institute provides a booklet for free that you can download or read online. And food safety is important. I used food grade medical gloves when handling meat. On my weekly chemo visits, we brought peanut butter and jelly sandwiches - which was both fun and good for me. The peanut butter. I kept pudding in the house for my general nail health and so forth. I have a website where I logged my diet at breastcancersharing dot com - Taking the Mystery Out of Breast Cancer. There is an Eating + Supplements section where I discussed what I ate with links to some of my own research. But your hospital or clinic should provide you with the dietary needs in accordance with what your wife's treatment. Everyone is different, as you say. Like Ingerp, above, my blood levels were really good throughout chemo. Some patients need white blood cell boosts if they dip too low.

You are right to be positive. Advances have come so far that treatment is customized to each individual. Positivism will help you and your wife, and reflect on your children. It does seem like a big blow at first, and crazy, hectic appointments and things to remember while going through the emotions is a lot to juggle at first. It gets easier. Write everything down and take it day by day.

Don't forget to find humor where you can. My husband and I laughed at the stupidest things and it lifted our spirits up. It's hard at first, but it's good for the soul and ultimately your health. Even if you share a comedy movie or TV show. Funny distractions can go a long way.


DX 24 AUG 2018 Right Breast (E+/P+ HER2+ 3/3 aggressive) Surgery 30 OCT 2018 Chemo Taxol 14 DEC 2018 Targeted Herceptin Radiation 27 MAR 2019
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Jun 27, 2019 07:12PM MattD77 wrote:

Thank you for the help and advice

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Dec 3, 2019 10:02PM vidal1993 wrote:

Hi MattD77:

My wife was also diagnosed earlier this Spring (June 3).

How are you doing now?

She is ER/PR positive, Her2- negative. Sadly, she was diagnosed with thyroid cancer at the same time.

On September 27, she underwent lumpectomy and had 2 out of 2 lymph nodes removed. It is either Stage 2 or Stage 3. Apparently "lymph positive" is the preferred term. It is a Grade 3 tumour. We started chemotherapy on November 15, and have another infusion on Friday.

We understand there will be another surgery after the chemo. She is on the FEC-D regimen.

Dealing with the kids is a hard one. We have 2 girls, aged 7 and almost 5. There are surprisingly few good resources on how to deal with this difficult topic, but we did read "Cancer Hates Kisses". The kids seem happy and resilient, but occasionally they will betray concern or fear. Hiding our fear from them has been one the hardest things.

My wife's hair is starting to fall out, and last week I made the mistake of discouraging her from cutting it before it is all out.

We are generally doing well, but I find the fear and concern usually sneaks up on you. Last summer, I lashed out at a co-worker.

I also find the change in our intimate relationship difficult. My wife is very self-conscious about her appearance, although I always assure her it doesn't bother me in the least. And it doesn't.

Let's hear an update from you, and/or anyone else who wishes to comment on my post.

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