Wife just diagnosed...a few questions

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

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!

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

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

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!

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.

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?

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?

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.

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.