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Overwhelmed and heartbroken.

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  • MBPooch
    MBPooch Member Posts: 40
    edited January 2019
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    Zambonisgirl - At the time of my diagnosis I had implants as I had previously been an A cup. Pagets and DCIS was on the left side, lumpectomy was not an option since I had no natural breast tissue. The oncologist and surgical teams suggestion was BMX with direct to implant at the time of surgery. It was the perfect situation for me as I would have done BMX anyway as I wanted to be as aggressive as possible. Waking up with breasts similar to what I had was very motivating for me and the recovery was much easier than I had imagined. Very similar recovery as when I got implants. Best of luck with what you decide, any questions feel free to reach out!


  • meow13
    meow13 Member Posts: 1,363
    edited January 2019
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    I am not dead and I refused chemo.

  • MoonGirlJess
    MoonGirlJess Member Posts: 211
    edited January 2019
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    I was gluten free and vegan for 3 years prior to my BC diagnosis. (Vegaritarian for 12 years and gluten free for 5 years plus prior to that.). I never ate anything besides fruits, veggies, rice, beans, and lentils (over the last 3 years). No sugar ever. I was 41 yrs old and ran and did yoga daily. I also had implants at the time. I have no genetic mutations. I didn't want chemo either but I had bulging axillary nodes and tumor on my chest wall. (Not clean margins) I'm an RN and I knew I was f#-$ed.

    I have a hubby and a daughter and I want to be around for a long time. I absolutely did the chemo that was part of the plan and now I'm in rads for 33 sessions. I'm not going to say chemo was easy but for me I had to do it. I'm whooping cancers ass with everything I've got.

    Juice and eat clean, absolutely. Is it going to stop cancer in it's tracks? Well, in my case it sure didn't.

    Jess

  • pupmom
    pupmom Member Posts: 1,032
    edited January 2019
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    Thank you for that Jess! Getting a dx of cancer usually means a fight for one's life. It's really that simple.

  • jo6359
    jo6359 Member Posts: 1,993
    edited January 2019
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    moongirljess- similar history of healthy eating, and exercise. Cancer in my chest wall so I did choose chemo and radiation. I also feel each person should make the decision which is right for them. I don't think it's a death sentence if you do not choose chemo. Weigh all the factors.

  • edwards750
    edwards750 Member Posts: 1,568
    edited January 2019
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    Heartbrokenhubby - did your wife have the scans and tests? We are here to help in any way we can.

    Diane

  • jo6359
    jo6359 Member Posts: 1,993
    edited January 2019
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    The decision is simple for some and very complicated for others. The wonderful thing is we all come from different walks of life and differing philosophies but we are usually respectful of each other's decisions. It wasn't simple for me. The chemo was an easy decision for me. The surgery was not easy. I only had cancer in my right breast and I really struggled whether to have a BMX simply for prophylactic reasons or a uni. I went with the BMX because I was not going to have reconstruction. I did not want additional stress on my body or mind. So we all come to our decisions based on where we are at in our lives.

  • HeartbrokenHubby
    HeartbrokenHubby Member Posts: 33
    edited January 2019
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    Thanks for all the replies, blunt and all!! I am very appreciative of all the info everyone is providing.

    My wife, Zambonisgirl, who is also part of this thread, has had a bunch of tests and scans.

    Everything is coming back good so far. She needed an X-ray of her cervical spine. Found some narrowing, which they said was normal wear and tear. From her CT scan of her organs, they see a cyst or tumor in her liver. They had her do an ultrasound of her liver and the tech marked the size. She said the doc will talk to us about it.

    Got a second opinion of everything from a team at University of Chicago Hospital. My wife would agree that all the docs involved at U of C made us feel more comfortable in moving forward, and made it seem like it's all not a big deal.

    They too said my wife is a stage I, with 5% aggression. (I forget the term she used)

    My wife wants to do the sentinel biopsy separate from the tumor removal. If the sentinel is negative, she may opt to do a single mastectomy with reconstruction, and avoid radiation and chemo all together.

    That is the plan for now...

    Been a roller-coaster ride for both of us. Again, I seem to be taking this the hardest.

    We are both vegans and have been for a year and a half. She switched to raw whole foods a couple weeks or so ago. I am trying my best to do the same diet, but damn do I love french fries!! Haha!!

    She LOVES Native Foods Cafe (100% Vegan restaurants) in Chicago. Went there yesterday for some "feel good" food for her.

    We were hoping she would be able to make her first bodybuilding competition in March, but with the food switch, her not getting to the gym as much as she likes, and possibly treatment... Looks bleek.

    Hoping to hear from some gals here that are body building and going through/completed treatment, and rocking their gym time, for some much needed motivation for my strong and beautiful wife. 😊


    Thanks again everyone!!

  • hapa
    hapa Member Posts: 613
    edited January 2019
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    I would avoid radiation if possible as well. I wasn't able to avoid it, unfortunately.

    For reconstruction, they should be able to switch out both implants if you do UMX to match the sides. The cancer side would get a larger implant and you may want to do fat grafting over it. The fat grafting would probably be a separate procedure after things heal a bit. The other side they can just up or downsize the implant to match the two. I had BMX and told my surgeon that if she had to take off my nipple to take them both so I could have a matching set reconstructed later. She said a lot of her patients preferred symmetry over having one nipple regardless of whether they were going to reconstruct them. I was able to keep my nipples in the end but my lymph nodes didn't fare as well.Best of luck to you.

    Also, I don't know where your implants are now. If they're pre-pec and you want the reconstruction to be pre-pec as well, make sure you cover that with the plastic surgeon. If they only do sub-pec they won't even mention the pre-pec option to you, they won't mention your pecs at all, you'll just wake up with the implant or expander under your pec muscle. As a bodybuilder, going sub-pec could be really problematic. But if your implants are already sub-pec and not bothering you, then obviously it doesn't matter.

    Also, you will have to decide if you want expanders or direct to implant. If you are putting the implants under the pec muscle, then expanders could be placed and inflated to stretch the muscle. A subpec direct to implant surgery would involve cutting the pec muscle, which I'm guessing you don't want. Pre-pec direct to implant is a pretty easy surgery, but if you want implants that are larger than your skin can accomodate, you'll need to get an expander either way. Hopefully your PS has discussed all these options with you.

    Best of luck.

  • NotVeryBrave
    NotVeryBrave Member Posts: 169
    edited January 2019
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    I'm glad that the testing is coming to an end with good results. I know how stressful all of that can be. And it's great that you've met some doctors that were encouraging and made you feel hopeful.

    I would caution you that having negative sentinel nodes and a mastectomy doesn't necessarily get you out of chemo and/or radiation. But Stage I is great with a really good prognosis. I'm sure that your providers will go over all of the options once all of the results are in.

    I find that the people who seem to do the best (physically and mentally) are those who continue their lives with some adjustments. It's very hard to live as if nothing has changed, but it's also detrimental sometimes to let cancer take over your life. It's a matter of balance.

  • Zambonisgirl
    Zambonisgirl Member Posts: 15
    edited February 2019
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    MBPOOCH -thanks for the feedback on your implant experience. So you left the other implant alone completely? They told me yesterday that for the sake of symmetry they will swap out the other implant too, especially since it sounds like they want me to go a bit smaller because my skin is thin.

  • Zambonisgirl
    Zambonisgirl Member Posts: 15
    edited February 2019
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    Hapa- Great info, thank you. My current implants are pre pec, and I will be sticking with that so it compliments my bodybuilding goals. Apparently my skin is very thin and so they may need to do the expander. We agreed yesterday that the PS will make that decision during surgery, since none of us know if my skin is up for being tugged so much. I’m finally with a team I trust, so that I’m itself is helping me gain confidence in the situation. Your feedback has been super helpful, thanks

  • Zambonisgirl
    Zambonisgirl Member Posts: 15
    edited February 2019
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    NotVeryBrave- You’re saying negative sentinel nodes won’t necessarily get me out of chemo/radiation....is that assuming it has spread/returned? What would that scenario look like

  • Zambonisgirl
    Zambonisgirl Member Posts: 15
    edited February 2019
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    MoonGirlJess- Sounds like we have a lot in common with being fit and health conscious prior to being ironically diagnosed. One of the things that drives me crazy about all this is I’m pretty much the healthiest person I know...and have often been a source of inspiration to others to workout, eat a little better, etc.

    But now when people find out I have cancer they are likely to now use me as the example of ‘Why bother trying’, or ‘If she got cancer, then I’m screwed anyway so who cares.’...and that drives me nuts! Did you ever feel that way too?

  • Zambonisgirl
    Zambonisgirl Member Posts: 15
    edited February 2019
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    jo6359

    Thank you. You are correct, we are all individuals with different backgrounds and motivating factors. In the end we just need to be ok with being ourselves

  • jo6359
    jo6359 Member Posts: 1,993
    edited February 2019
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    zambonisgirl-I, also, was a strict vegetarian most of my adult life. My friends and family members made similar comments, "why bother if it happens to you and you did everything right" I tell them life happens. Being very healthy made the whole process easier for me to deal with. I ran almost every single day. I started walking 2 miles 5 days post BMX with my surgeons full approval. Within three weeks post BMX I started chemo and throughout the whole process I never stopped exercising. We are all different. Being able to exercise and work throughout the process made me feel better. Good luck to you. Being so physically fit is a huge advantage for you in this journey. It isn't easy but it is doable.

  • NotVeryBrave
    NotVeryBrave Member Posts: 169
    edited February 2019
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    Chemo is determined more by the aggressiveness of the cancer and likelihood of it returning. Some types of BC (like mine) are pretty much an automatic chemo situation. The Mammoprint or Oncotype tests help to figure out the benefits vs risks of chemo for your particular cancer.

    Mastectomy with negative sentinel nodes can help to avoid radiation - depending on the location of the tumor. If it's close to the chest wall or there are indications that the margins aren't clear, then radiation is still frequently advised.

    Sentinel node status is just one more piece of information. If they are positive then there is more concern about possible spread outside of the breast. But cancer cells can also pass through the lymph nodes. Or the blood stream. So the status is helpful but not definitive.

    It would be helpful if you could add your info in your profile and make it public so that we could all see what info you have so far.

  • CaliKelly
    CaliKelly Member Posts: 198
    edited February 2019
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    Zambonisgirl, I was always held up to be the most health conscience person in my family and of all my friends. Not vegan, but clean food, avoid junk, no booze ,drugsetc. I did everything to stay healthy. Former fitness trainer for years. Go the gym almost every day since age 18. My cancer was advanced when found, so I had to have the works, chemo surgery, radiation ,more chemo. Went to the gym throughout my treatments. After 2 1/2 years of active treatment, i re dedicated myself to get back to my former level of fitness, and im achieving that goal. Also i only had one sided mastectomy and my plastic surgeons did an excellent job of matching my cancer side to my good side. So i wouldnt worry that you wont be able to go back to your body building, you definitely will! Go easy during treatments, but when youre done, go back, full on! Gradually of course😉

  • CaliKelly
    CaliKelly Member Posts: 198
    edited February 2019
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    P.S. I was the same, advising and nagging my less health conscience friends and family. Now what? Well I still do, and say, how do you think I came through all these treatments and am back in Super Hero status? I'm still in better shape than everyone I know ,and have powered through over 2 years of treatment. So I still nag and advise good diet and exercise!

  • MBPooch
    MBPooch Member Posts: 40
    edited February 2019
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    Zambonisgirl - I had both implants swapped at the same time for symmetry sake! My understanding was that Direct to Implant can only be decided day of surgery depending on factors that can occur during the surgery itself. I was thrilled that it worked out, I was able to get by with 1 surgery and my breasts look very similar to what I had. Worse case scenario they would have had to put in expanders and I would have swapped out later.

  • lisey
    lisey Member Posts: 300
    edited February 2019
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    Zambonisgirl, given how healthy you try to keep your body, Please please research implant illness and ALCL,  I just went with the 'plan' for me because I was younger and healthy, and once those damn plastic shells were in my poor pec muscles (which had been sliced in half like sandwich bread to hold them) I realized I totally betrayed my body.  I'm now flat and fabulous and feel SO MUCH HEALTHIER and 100% back to me.   If you google 'going flat' you'll see there's a ton of us younger folk who are opting to stay 100% natural for many reasons. 

    PM me if you want to know the issues I experienced as well as the thousands of others who are explanting and going flat.  I think I look like a ballerina and exercising feels natural again. 

  • hapa
    hapa Member Posts: 613
    edited February 2019
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    zambonisgirl - I was also vegan, whole foods only, no alcohol, no fried foods at dx. Ovo-lacto vegetarian before that since I was 16 (I'm 42 now). Trail running ~20-25 miles/week. The healthiest person I knew. I sailed through treatment, and as you can see I've had the works. Toward the end of chemo I got down to just doing 30min elliptical at the gym 5x/week, but I worked out the whole way through. I also worked right up until my BMX. I was told to take six weeks off work for recovery from BMX, which I did but I really didn't need it. Not being able to do cardio after BMX was tough, but my body held out for those six weeks and I was able to get right back to it. Most of the insanely healthy people I see on here do very well with their cancer treatment, so you probably will too. And I second NotVeryBrave's advice. Don't assume mastectomy means no radiation. I didn't have a choice, I was not a lumpectomy candidate and my BS told me I was likely to get radiation from day 1. If I had a choice and was going to get rads either way, I would have done a lumpectomy.

  • MoonGirlJess
    MoonGirlJess Member Posts: 211
    edited February 2019
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    Zambonisgirl—Totally! I felt like I got shafted. What a waste of a clean lifestyle! I didn't shove Taco Bell in my face and drink Dr Pepper by the 64 oz kegger. It really seems so unfair. My family joke was that I was too healthy and that's why the chemo hit me so hard. I completely agree that exercise is great for the mind and body through his crap journey. However, I wasn't able to exercise through the end of my AC treatments (just too sick) so don't put too much pressure on yourself. Some days I just couldn't do it. I started running again (during Taxol) and I absolutely feel great. I'm back on my clean eating, running and doing Pilates daily through rads, and just started on Tamoxifen. You got this! PM me for anything!

    Jess

  • wanderweg
    wanderweg Member Posts: 487
    edited February 2019
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    Heartbroken & Zambonisgirl - I'm late to this particular thread, but welcome. I was also pretty damned healthy before my diagnosis - ate a mostly pescatarian Mediterranean diet, didn't smoke, didn't drink sodas or processed foods, exercised. My tumor was found on a routine mammogram, hidden behind calcifications in extremely dense tissue. I only had cancer on one side but opted for a BMX because I know the density of my tissue predisposed me to developing cancers and I just wanted off the merry-go-round of mammogram call backs and biopsies. I (and my team) were all surprised when my oncotype score came back high, indicating a need for chemo. I was flat out terrified of chemo. But although it's not easy, it turns out it truly is doable. They've come a long way in managing symptoms. I hope it's not indicated for you, but know that there is a lot of support here for you if you have to. I have zero regrets about all of my treatment decisions. And I'm rocking a badass Sinead O'Connor hairstyle now.

    As for things like homeopathy, I'd encourage you to be selective about internet research. There's a lot of bad information out there and recommendations that are in no way based on evidence. (Egads, thanks for that great link on Chrisbeatcancer!) I generally check to see if there are NIH/NCBI studies on whatever recommendation I read about. I've moved to an even more plant-based diet, which includes soy (the research suggests its beneficial even for ER+ cancers as long as it's whole forms of soy - tofu, edamame, tempeh - and not supplements or powders). Lots and lots of cruciferous vegetables, greens, beans, and whole grains! And I'm exercising. Those lifestyle factors aren't magic, but there is at least some solid evidence to suggest those things help. I'm also on tamoxifen for the next ten years and taking baby aspirin and melatonin with it, again because the research behind those things is pretty solid.

    There are lots of good threads on here for each stage - I am wishing you guys the best. I can say from my own experience that having a supportive husband who is completely invested in my health made a huge difference. Once you have a plan in place, that will bring some peace of mind.


  • edwards750
    edwards750 Member Posts: 1,568
    edited February 2019
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    Apparently the criteria for developing BC is just educated opinions based on limited research. I know a number of women who lived the healthy lifestyle and still got BC although being and living healthy is a recipe for a long life. Doctors are at a loss to explain why some women draw the unlucky card. There are those however who are more likely to get BC because of a genetic connection like my sister and myself. Neither of us lived the super healthy lifestyle you guys did and do.

    The one piece of advice I have heard multiple times from doctors to help ward off a recurrence is to exercise. No guarantees for any of us. I had a low Oncotype score of 11. 8% chance of recurrence with taking Tamoxifen for 5 years. I’m 7 years out last August. So far, so good.

    Diane


  • swg
    swg Member Posts: 59
    edited February 2019
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    Yeah, seriously..where is that person coming up with this b.s. that everyone on BCO who did alternative meds died?? Not cool..and not true.

    I did a mix of medical treatment, and changing my diet/losing weight. I was Stage 1..had 2 tumors in my right breast. Decided to go with a UNILATERAL mastectomy, and had a very good plastic surgeon who did the reconstruction.

    That being said, I was very happy with the symmetry of my breasts til I started doing personal training, and my natural breast shrunk :(

    The tissue expanders weren't great. But they looked better than my final implant does..implants tend to shift. The implant doesn't bother me at all, and in fact, I had a nipple sparing mastectomy and my scar is really healing nicely. So only at certain angles, can you even tell my right breast is fake. (and it dimples a little in certain poses..but I think that's avoidable.)

    I'm even starting to get some feeling back into the reconstructed breast.

    I too had ER+/PR+ HR2- tumors..slow growing. No genetic markers that could be found at this time. But did have a family history..since your wife's grandmother had bc, it shouldn't be a problem for your dr to get your insurance to pay for your genetic testing.

    It sounds like they are being very thorough with your wife..I mean, I never got a CT scan or any of that. I think they usually don't do those tests til after your surgery..

    My dr. only tested my sentinel node..that's what they do these days. No need to remove any more lymph nodes than is necessary. Mine was negative, thank goodness.

    It was recommended that I go on Tamoxifen. I chose not to. I made a calculated decision that the risk of side effects, quality of life effects, and other physical problems wasn't worth it. I don't regret it.

    You will get through this, but yes. It is a total roller coaster ride, for sure. Just take your time and make sure you are 100 pct comfortable with the drs who are treating you, as that's the MOST important thing.

  • swg
    swg Member Posts: 59
    edited February 2019
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    There are quite a few risk factors drs DO know about..for ex, taking birth control pills at an early age (I did this.) Never having kids (that's me as well.)

    Plus, you can't discount environmental factors..nothing can be done about that, really..we live with so many chemicals that we breathe in..or get inside our bodies, esp petrochemicals due to our reliance on fossil fuels.

    I choose not to fret over things I can't control. At this point, it doesn't matter HOW I got it but that I just take care of myself as best as I can.

  • swg
    swg Member Posts: 59
    edited February 2019
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    I do think, although being really healthy didn't keep any of us from developing bc, I do think it has helped so many of us to get through the treatments and recover faster.

    I was really amazed that less than 1 week after my mastectomy, I was feeling pretty dang good.

    And never had lymphadema, or anything like that.

  • jo6359
    jo6359 Member Posts: 1,993
    edited February 2019
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    Swg- I had a breast MRI and a PET CT scan prior to my surgery. I was very glad I did because a second tumor was found in the same breast which changed my surgical outcomes. I went from being scheduled for lumpectomy to a BMX. I was very thankful for the scans.

  • Pommom1809
    Pommom1809 Member Posts: 161
    edited February 2019
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    I thought I was pretty safe as I had my children when I was young, breast fed all four of them. Also, no family history of cancer. Doc said I was one of the 26% who get cancer without no markers