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Overwhelmed and heartbroken.

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  • CaliKelly
    CaliKelly Member Posts: 198
    edited March 2019
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    Following you back G.G.💜(garlic goddess)😀 I LOVE garlic, my hubby is Italian, so I use a lot of it! Hope you're feeling better and better each day! Are the drains out yet? That was my most hated thing, those dang drains, pain in the glutes!

  • Zambonisgirl
    Zambonisgirl Member Posts: 15
    edited March 2019
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    Kelly- My hubby cameup with the Goddess part LOL. I was going to be VeganGarlic ‘girl’...but he voted Goddess ❤️.

    We’re finally headed back to my first post op with the surgeon now :) WHOOP! My drain fluid went up too much yesterday, which was weird because I was less active than normal, so I don’t think they’ll remove it today. Tomorrow is appt with plastics girl so hopefully then!

    Today we find out if the brusing is as excessive as we expect. Fingers crossed that it’s nothing!

  • KBeee
    KBeee Member Posts: 695
    edited March 2019
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    A consult with a medical oncologist is ALWAYS recommended, whether the surgeon thinks it's needed or not. Surgeons are experts in surgery; the medical oncologist is the expert on the medical side of things. Ask for a consult with one, even if the surgeon thinks it is unwarranted. I have seen too many women on here miss a window for treatment that would have been helpful, simply because their surgeon did not think they'd need anything further.

  • HeartbrokenHubby
    HeartbrokenHubby Member Posts: 33
    edited April 2019
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    Hey everyone!!

    Her drains are out and she is moving around much better without them. Bruising is reducing much better too.

    She went back to work today for the first time since her surgery. About middle of the day, she said she could use a nap. Lol

    We are waiting for the Onco (I think I spelled that right) test. She said it would be a couple weeks. Surgeon really wants my wife to do hormone therapy, Tamoxifen, which my wife is not interested in. We will also find out if chemo is recommended, she does not want chemo.

    Her cancer was a grade II, and they said she is a stage IA, at 1.3cm.

    Her choice, but, I'm not sure she/we are educated enough to clearly make a decision on what's best for her. We are not cookie cutter type people. We do not believe what's good for one person is what's good for all. I've seen people in disbelief that someone with stage 0 or stage I cancer would get radiation and chemo, saying that she shouldn't have gotten chemo out the gate. So it leaves me with an uneasy feeling, knowing we don't know.

    My wife has told me that she absolutely does not want chemo, no matter what. Quality of life is more important to her, than a sick or weakened longevity. I've seen people receive chemo and they continue their lives just as they did prior, with no difference at all. Then there are the ones who become so sick, that they spend the rest of their lives this way. I do realize there are different stages and severity.

    I respect and understand her wishes, I just can't help but be selfish ensuring her longest life with me. Is it truly your health condition going into chemo is what you get coming out of chemo?? Can an absolutely dedicated health nut turn the opposite direction with a weakened immune system and possibility of more cancers and or infections?? I feel like I'm rambling, but this is what spins in my brain constantly...questions with no solid answers... Is she being naive?? Is she being selfish in her decision in not trying for a longer life?? Would chemo actually shorten her life?? Would I actually be ok in the long run with her decision to chose quality over longevity?? Is this all a scare tactic by the medical and big pharm industry to get everyone to buy into what they want you to??

    My questions and uncertainty is in no way meant to downplay or belittle anyone's battle or decisions of treatment... I just want my beautiful wife to be with me as long as I can have her, in the same condition she's always been for me.

    Her battle, her decision, my emotional and mental torture.

    Like I tell her, I do everything in my power to protect her, as her husband, and the hardest thing for me to accept, is that this fucker snuck in.

    I know she will read this. I'm just throwing it out there in hopes to make the uncertainty stop in my head. :(

  • simonerc
    simonerc Member Posts: 154
    edited April 2019
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    I know this is all new and scary. I echo KBeee, I hope your wife is open minded to discussing recommendations and options with a medical oncologist. These are important and case/person specific recommendations. Nobody will make her do anything. But, having a consult to get educated and explore options is an important step to take. Good luck

  • jo6359
    jo6359 Member Posts: 1,993
    edited April 2019
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    heartbrokenhubby- I was extremely fit prior to surgery and chemo. I remained physically fit throughout chemo and radiation. I was fortunate I tolerated both very well. I was not sick during chemo. There were definitely a few bad days but they were rare. My toughest thing with chemo was losing all my hair, horrible metallic taste in my mouth and fatigue. Even with fatigue, I worked every day and exercised every day. I am in complete agreement with you regarding cookie cutter treatment. Do your research and make the decision based on your research and your belief system. Being HER2+ I followed a standard protocol. Good luck to you and your wife.

  • hapa
    hapa Member Posts: 613
    edited April 2019
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    I was very similar to jo6359. I breezed through chemo and am back out trail running now, resting HR under 50bpm. My hair looks god awful though, I'm not gonna lie (its growing out, this should be temporary). I don't regret doing chemo one bit, but you definitely need to assess the risk/reward because there are long term risks associated with chemo.

    I think for someone who is a dedicated athlete, chemo is easier because we are used to pushing our bodies to the limits and dealing with pain, and we know how to manage our nutrition. I didn't feel like I was anywhere near the limits of what my body could tolerate at any point during chemo. Now that it's over, I don't know what I was so scared of.

    But it is most likely that your wife will not need chemo, so it's a moot point.

    You should also ask about the expected risk reduction with tamoxifen or AIs. I've heard numbers as low as 1% and I'm not sure why those people are taking it. For me it was too big of a reduction to pass up. I'm doing well with that too.

  • Mymomsgirl
    Mymomsgirl Member Posts: 95
    edited April 2019
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    Heartbroken, the wait sucks, but wait for the test it can tell you a lot. I was grade 2, stage 1A and had an Oncotype of 9 so no chemo. Also my report said that if I take Tamoxifen my reoccurence rate will be 3% if I don't take it it will be 6%. I'm trying it to see how I do, mainly because both my mom and my aunt had BC, along with some of their cousins. There is no genetics so it leaves you guessing what is it. If my quality of life is good, I'll take it, but if it gets bad I'll quit know that my rate is going to double, but it is only % and I can do that knowing that I gave it the good old college try. If I didn't have the family history I would've probably skipped it with such a low percent. This is one test you pray for a failing score, something less than 15 is great!

  • edwards750
    edwards750 Member Posts: 1,568
    edited April 2019
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    hapa - 1%? I’ve never heard it predicted to be that low. My chance of recurrence is 8% taking it for 5 years. Idk about the other drugs. My BC was Stage 1b, Grade 1 IDC. I’m 8 years out in August God willing.

    Diane

  • KBeee
    KBeee Member Posts: 695
    edited April 2019
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    Once the results come back, the medical oncologist should be able to go over the percentage benefits of chemo and Tamoxifen or AI specific to her situation. If she can avoid chemo, that would be great, but if it is recommended, make sure she knows that not everyone is sick like most people perceive. Some people do feel sick, but others pretty much breeze through. I was one of those who pretty much breezed through. I exercised every day and even did a half marathon. I did not run the whole thing; I alternated running and walking miles, which is how I trained. It was probably not recommended, but training for it was a mental diversion from chemo and gave me a goal. So what I am saying is that it is possible for many people to do well, keep working, and plow through chemo. I was not on my top 10 list of favorite experiences, but it is not on my bottom 10 either. Nevertheless, I am hoping that is a decision your wife does not have to make. Ultimately she'll have to make the decision. Tell her your wishes, but at the end of the day, support her in whatever decision she makes.

  • CaliKelly
    CaliKelly Member Posts: 198
    edited April 2019
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    Hi hubby!I was stage 3c, so I was gonna take whatever they had to offer. I felt like my good health and fitness really helped me also to tolerate chemo, rads, more chemo plus surgeries in between. Now 2 years past my last chemo, I have a few lingering effects, mostly neuropathy in my feet, but I'm hopeful it's not permanent. It has never occurred to me that I might die from this, maybe because I'm delusional, I prefer optimist, and it also never occurred to me to not give it all I had in me to fight this. I told my docs, if it ever comes back, it won't be because I didn't do every single thing I possibly could. Tell V.G.G. , shes gotta make her own decisions, but I'm feeling strong fit and healthy again, and I went through all the menu items, if that helps. No lessening in my quality of life, except that hy husband still acts like I'm fragile, and I can kick his butt! Best to the goddess!

  • HeartbrokenHubby
    HeartbrokenHubby Member Posts: 33
    edited April 2019
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    Thanks everyone for the replies!! We very much appreciate them all!! ❤

    We will ask the questions and about risks of hormonal treatment and chemo.

    So I would love everyone's opinion/research on this please... what do you feel about alcohol consumption with breast cancer, specifically dry red wine?? I ask as, from what we have found, there is a ton of conflicting data. She loves red, dry wine, and though she eats about a 98% raw whole food diet, we like to have fun a little and loosen up with spirits. We had our mind set on the fact that she will never truly enjoy an occasional treat, then we thought maybe a very little couldn't hurt. By little, maybe 5oz of red wine once a week or more. Lemme know whatcha's think please. 😊


    @Calikelly, LMAO about kicking your husband's butt!! 😂😂😂 If my goddess tried, it would look very much like a squirrel trying to wrestle a tree!! Haha!! She is such a tough cookie though. Very determined and goal oriented. She started work again Monday of this week, she brought her gym bag. She was surprised just how much being up and about at work really drained her. She said she could have used a midday nap. She said she will try to get to the gym tomorrow. Lower body only. She recovers so fast, it's crazy. One of our coworkers was surprised she was at work already and walking around like nothing happened. Lol

    Visualize... 🐿🌳

  • tb90
    tb90 Member Posts: 284
    edited April 2019
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    Heartbroken: Please encourage your wife to enjoy her life. Red wine 🍷 included. Alcohol is a risk factor, but also contributes to quality of life in my opinion. If tea cuts it for some, then don't add wine. But some eat sweets, some are overweight, some don't exercise daily, but all of us deserve to enjoy our indulgences without guilt. Cancer should not take thus from us. Expecting women to be perfect or else feel responsible for their dx makes me mad. Cheers

  • cindyny
    cindyny Member Posts: 1,236
    edited April 2019
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    Heartbroken - I second TB90. I believe there is a link between BC & alcohol consumption. BUT life is life, I myself prefer a good beer. I'm not drinking daily and I limit myself to 1. Cheers is right, the Irish in me would say Slainte!

  • nancyhb
    nancyhb Member Posts: 235
    edited April 2019
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    First time around I was Stage 1A, grade 2, 1.3 cm IDC, garden-variety ER/PR+ Her2-. My MO suggested 5 years Tamoxifen while we waited on the Oncotype test, and he was confident I wouldn’t need it. But with a score of 42 and a 28% chance of recurrence - I did the chemo. I was in grad school, running (slowly), teaching yoga, staying active, even during chemo. I took more naps, but pretty much powered through. I found it to be a challenge I appreciated tackling, if that makes sense. My physical activities gave me the the strength and endurance to power through whenever i really didn’t want to - and I’ve carried that forward to powering through training runs today. It’s not pleasant, but it’s doable. As others have said, I feel like my activity level made getting through treatment easier.

    And yes on the wine - and other treats that feed your soul, too. You’re fighting hard to beat this disease; don’t deny yourself small pleasures along the way. 😊
  • edwards750
    edwards750 Member Posts: 1,568
    edited April 2019
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    I have heard the same thing about alcohol and BC / they don’t mix, however, I believe in everything in moderation. I’m not a wine drinker either - I like beer but I probably don’t have more than 2-4 a month. I don’t deprive myself of sugar or red meat either. Franky every day it’s some new food, etc you should avoid and always complete with dire consequences if you do.

    Diane
  • hapa
    hapa Member Posts: 613
    edited April 2019
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    There's no point in saving your life if the cure is going to ruin it. I see drinking alcohol as no different from refusing chemo or other treatments. Yes, it makes it more likely that the cancer will come back but you need to decide if your QOL is more important. Personally, I could take or leave alcohol so I've left it. But I will not give up my stressful career. I've had less stressful jobs that pay just as well but they were boring and I hated it. Maybe the stress will make the cancer come back, but at least until then, I've lived!

  • Pommom1809
    Pommom1809 Member Posts: 161
    edited April 2019
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    I was allowed to have an occasional drink, but them my liver enzymes went out of whack. Drinks were put on my no list until the enzyme numbers were back to normal. I tried some red wine at New Year’s dinner. One very small sip, immediately felt much pain from the wine, like I was swallowing acid. A couple months earlier I had a martini & couldn’t finish it, was burning my mouth.

    I did taste some beer three weeks ago that was so good, wine will be next

  • ZEKE
    ZEKE Member Posts: 59
    edited April 2019
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    Hi Heartbroken,

    I too decided not to have chemo. I am doing full breast radiation. It’s my choice. You can go crazy looking at all the research and all the stats here on this site. Someone said it’s a crapshoot and it is.

    There are people here who have had very small tumors with low grades and got full mastectomies, had chemo and radiation and got cancer back the next year.

    Some opted for no radiation no chemo no hormone therapy after surgery and are fine 5 years later.

    No one knows who has the cancer that will blow up inside you and the ones that don’t have that kind of cancer. Some never get the cancer back and live to a very old age. Don’t be mad at her about her decision. Make sure you both do some research get second and third opinions and just do your homework so you will feel better about the decision she makes.

    May God Bless

    Zeke


  • beep7bop
    beep7bop Member Posts: 45
    edited April 2019
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    how is your wife doing ? I had my surgery April 1 2019 got call from doctor today , by the way had double MX. Cancer was in left breast, today I found out it is also in right breast and I will need more surgery. Should have done this when they cut that one off , the first time. I am just dumb founded. So back in when I have healed some and just means delay for treatment 

  • HeartbrokenHubby
    HeartbrokenHubby Member Posts: 33
    edited April 2019
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    @beeb7bop, WHAT??!! Why the hell wouldn't they get it when they were there?? My guess would be that they need to remove a margin from a tumor that they didn't know was cancer...or didn't know was even there, I guess...

    I'm sorry you have to go through that again. :(

    My wife is doing great. Thank you for asking. :)

  • WorryThePooh
    WorryThePooh Member Posts: 378
    edited April 2019
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    I've been reading through the posts with interest about the wine situation! Since my hubby read the recent news article about ANY alcohol at all increasing risk of breast cancer, he went a bit nuts and said he wanted to throw out all my lovely bottles of red and white. (he doesn't drink wine) When I read it for myself, I decided that I would definitely cut down on wine, due to the raising of oestrogen levels it causes. After all I am taking anastrazole pills every day and coping with side effects etc, so I don't want to sabotage my own survival. However I might just have a glass once a fortnight, or once per week when on vacation! But not 3, or sometimes 4 nights a week, as I was previously.
    Heartbroken in my case I really didn't want to take the pills, but my mind was changed by meeting a lady in the radiotherapy waiting room, who refused the tamoxifen 5 years ago and now wishes she took them, she now has a grim prognosis. I know this anecdotal experience doesn't prove unequivocally that one must take them, but she kept telling me, "take them, I may not have been in this position if I had taken them." I started getting very nervous so I went and filled the script at the beginning of March, and so far I feel not too bad, sometimes a bit down and trouble sleeping, but I am hoping these go away with time.

  • salamandra
    salamandra Member Posts: 745
    edited April 2019
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    Hey WorryThePooh,

    That is a brilliant name. I relate!

    It's understandable that your husband is freaking out, but it sounds like he could use some healthier ways to channel his anxiety rather than managing your diet for you (without your request!) I wonder if he could focus on environmental risks you guys could reduce around the house, or organizing support for breast cancer research in your community or something.

    That is definitely a compelling anecdote. It makes me so sad to think about someone blaming herself for recurrence. I really think we can't know ahead of time. But I am also a worrier and am really glad to have access to tamoxifen. Actually, I'm having a pretty hard time with some of the side effects but am going to try to stick it out for at least a year (trying different brands) to hopefully get my body adapted. It's such a blessing that hormone receptor positive ladies have access to this class of drugs.

  • Kellyruss
    Kellyruss Member Posts: 4
    edited April 2019
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    Can you please explain what an Oncotype test is?

  • edwards750
    edwards750 Member Posts: 1,568
    edited April 2019
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    The Oncotype test is a predictor of a recurrence and if there is any benefit from chemo in addition to hormone therapy.

    Genomic Labs did my test and from what I understand is the company used most frequently for this test.

    The lower the number the better. I know they have changed the ranges recently which are separated by low, intermediate and high risk. The test results typically come back in 2 weeks. It was expensive when I had it done in 2011 but BC/BS covered the cost for me.

    My score came back at 11 with an 8% chance of a recurrence. That score allowed me to dodge chemo. I had radiation instead.

    Diane

  • edwards750
    edwards750 Member Posts: 1,568
    edited April 2019
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    In addition the Oncotype test examines the activity of 21 genes from the breast cancer tissue sample that can determine how the cancer will respond to treatment. The test results assign a recurrence score between 0-100.

    Diane

  • Zambonisgirl
    Zambonisgirl Member Posts: 15
    edited May 2020
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    beep7bop how are you doing these days?

  • Zambonisgirl
    Zambonisgirl Member Posts: 15
    edited May 2020
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    Need some advice team. I went for my first annual post-surgery checkup, which ended up being an ultrasound because they can’t do a mamo on me...and though it came back good, ever since then I have a lymph node in my armpit that was aching for a week, and then that went away and then the following week I felt really emotional and crabby like PMS...but for a full 7 days. I feel like I am on a crazy hormonal rollercoaster now and I’m worried that exam encouraged my estrogen to skyrocket for some reason. Not on any meds and don’t want to. Anyone else have a weird reaction post-exam?

  • cindyny
    cindyny Member Posts: 1,236
    edited May 2020
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    Zamboni - almost 11 months out from surgery I was able to have both mammo and ultrasound. I had no hormonal reaction, but I am on the AI anestrazole. You could check with your doctor, clear your fears.

  • wtfwiththeusername
    wtfwiththeusername Member Posts: 3
    edited May 2020
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    Diane, your post reminded me of a question I've had for a while about the Oncotype test. I've seen some women report lower scores but higher recurrence percentages than my test. Case in point: your own. My score was also 11 but the recurrence risk reported for me was 3% (with hormone suppression). Any ideas why the difference?