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Overwhelmed and heartbroken.

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  • jo6359
    jo6359 Member Posts: 1,993
    edited January 2019
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    zambonisgirl- I was not ill at all when I was diagnosed with cancer. It was a shock to me. I was in very good physical condition prior to my diagnosis. I've always been an avid Runner, vegetarian and little bit of a health nut. I also ran almost every single day of chemo. I personally believe being physically fit helps a great deal in dealing with treatment. There are some things we have no control over and we just have to roll with the punches. I am almost 7 months post-chemo and I feel fantastic. I continue to run almost daily and stairclimb. My hair has grown back nice and thick. When I was first diagnosed I took Ativan for 7 days to help me over the hump. I haven't taken it since then. It is a scary time but the more information you have the better-equipped you will be able to handle everything that comes in your direction

  • meow13
    meow13 Member Posts: 1,363
    edited January 2019
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    I was in excellent health when I was diagnosed at 53, I had 2 tumors idc and ilc each 1cm. My tumor board recommended mastectomy. I did it, still felt fine then 4 months later had DIEP reconstruction using abdominal tissue. Even though I was 123 pounds I had extra skin and tissue. My results were really good. Most of my pain was emotional the plastic surgery fixed that.

    I did take AI hormone therapy because I was er positive pr negative her2 negative for 4 years. It did a number on me I have been off the stuff nearly 3 years and I still have mild lingering joint pain.

  • HeartbrokenHubby
    HeartbrokenHubby Member Posts: 33
    edited January 2019
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    19 hours ago gkidsnana wrote:

    Zambonisgirl I also felt great until I started all the necessary tests and procedures for this bc. I have had 2 weeks of intense testing like 4 full days packed with Dr appointments CT, bone density, biopsy's, ecgs, port placement and whatever else they thought of. I am mentally and physically exhausted buthope to start back exercising again as soon as I feel up to it during chemo. I start my chemo Tuesday. Good luck with all your treatments and hopefully you will have few side effects

    @gkidsnana, you're having to go through chemo before surgery? We were told you go through chemo before surgery only if you are her-2 possitive. Your stats say you are negative though...

    I'm so confused!! 😔

  • dtad
    dtad Member Posts: 771
    edited January 2019
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    Heartbrokenhubby....chemo is sometimes given before surgery if the tumor is large and they want to shrink it first. Otherwise it is given after if appropriate. Remember not everyone gets chemo. It just depends on individual circumstances. Good luck and keep us posted.

  • HeartbrokenHubby
    HeartbrokenHubby Member Posts: 33
    edited January 2019
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    @dtad, thanks for splainin'. Doc did say they do that to shrink the tumor to makes surgery easier. Doc said my wife's tumor is small, but because she has almost no fat on her, they may need to shrink it for easier surgery. We'll see, I guess.

    Thanks!!

  • CaliKelly
    CaliKelly Member Posts: 198
    edited January 2019
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    Yeah, I had TAC chemo first also, call it neo adjuvant chemo, to shrink tumor. Sometimes it gives what they call a complete pathological response, which means they can't even see the tumor anymore. Not for me, but it did shrink it a lot. Then I had a mastectomy, only on cancer side, I figured t he other breast was fine, if it ain't broke, don't fix it. Rads, recon- direct to implant, Didn't work out, radiation had tightened up the skin, so had latissimus dorsai flap reconstruction, with implant, came out pretty darn good. Regaining all my range of motion and strength, working out every day, really life will eventually be routine again. Take it step by step.

  • InnaB2018
    InnaB2018 Member Posts: 766
    edited January 2019
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    Zambonisgirl, welcome and so sorry to met you here. I went with BMX because my tumor was 3 cm and I’ve been 34DDD before the cancer fiasco. First and second opinion surgeons said they would have to operate on the second breast anyway to make it the same size and shape as the cancerous one, so I thought no way, just remove it.

    And yes, I also felt great before I was diagnosed. After that, not so much. Once you get the treatment plan, you’ll feel better, though.

  • dani444
    dani444 Member Posts: 215
    edited January 2019
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    Zambonisgirl- sorry you have found yourself here. As everyone has said the beginning is the worst part, it was for me emotionally. I had a choice initially to decide between MX or LX and I struggled with the choice. I was told statistically there is very little difference between LX plus rads v MX. Tumor board ended up deciding I needed MX after further testing. I was grateful for my teams diligence. I had two positive nodes, one with extranodal extension, as you can see I am still staged 1b. It was decided that I could have rads for the positive nodes rather than full dissection. I am 7 treatments from the finish line! No Chemo due to mammaprint result. You will find your footing during this process and get down to the business of treating this little monster. I wish you the best as you continue through testing. Ask as many questions as you need to on here. Or just drop in to vent any fears if needed. Sounds like you have a lot of good support around you

  • HeartbrokenHubby
    HeartbrokenHubby Member Posts: 33
    edited January 2019
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    Thanks so much for the info and your experiences. We very much appreciate and love that every one of you are kind enough to take the time to reply.

    I have another question....

    With us being vegan, we are always up for alternative methods. We have been watching "Chris Beat Cancer" YouTube videos.

    What's your take on homeopathic methods? Has anyone been successful with it? Anybody know someone who has had success?

    We are still absorbing everything and it is overwhelming. I told my wife that I am in no way interested in gambling with her life...at all. But, I also want her to do what she wants too, and she is leaning to natural methods.

    Everyone here has been down the path. Please understand that I mean no disrespect to everyone's piece of hell they went through. Just hearing a lot that chemo is very damaging, and CAN be cancerous in itself being a carcinogen and the inflammation it causes. A ton of conflicting info!! I just want to know the right path for my beautiful wife to continue living a long and healthy life with me. I just don't want us to choose wrong.

    Btw, we are vegan because of me. I needed to change my course of eating. Was consistently eating bad and I could feel it affecting my life. Longevity is not in my family!!

    We have felt great ever since.


    Thanks everyone!!

    HeartbrokenHubby

  • cindyny
    cindyny Member Posts: 1,231
    edited January 2019
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    HeartbrokenHubby- lets step back for a minute, from what I've read I don't think its been decided that your wife needs chemo as of yet.

    At first diagnosis for me it was assumed I would not need chemo. After surgery, OncotypeDX score came in at 19 and my MO recommended chemo. I told her I was not on board, this was in late Dec 2017. I chose no chemo - poison in to kill everything wasn't where I wanted to be. (My stats are listed below, small tumor, etc)

    July of 2018 TaylorRX (a study that went on for 10 years) finally came out. Fortunately for me due to my age, tumor status, and Onco score - no chemo would be recommended. So you could say I lucked out.

    Note that since I've been diagnosed in Oct 2017 a lot has changed. Giving a "stage" of cancer has changed; chemo for what range of Onco score has changed.

    I know a lot of people say don't Google - I looked up everything, twice. I took notes on everything I found out, I never wanted to be blindsided nor dumb founded in a conversation about what "they" wanted me to do. Even radiation - I wanted to spend the least amount of time doing it; found "accelerated hypofractionated whole breast irridation" saw that I met the specs; did 16 days of double dose rads, instead of 30 -32 daily lower doses.

    I know of no one who chose homeopathic route, so really can't speak on it. In my heart of hearts I'd like to think that would be the way to go, but it's almost like doing nothing (ie. no diet) and expecting great results. Only my 2 cents. There is a thread here on choosing no treatments, and a holistic thread too.

    We're all rooting for you and your wife. The best outcome with the least issues.

  • HeartbrokenHubby
    HeartbrokenHubby Member Posts: 33
    edited January 2019
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    CindyNY, thanks for the reply.

    You're right, we haven't been told yet that she needs chemo. Still waiting results to trickle in. Don't know yet about her-2.

    Luckily for my wife (sarcastically speaking), I am a worst case thinker. Always have been. Like you said about checking facts on Google twice, it's about being prepared. I do not like surprises, especially when it comes to the love of my life, and scary shizzz. It can be exhausting for what seems like no reason at times, but like you said, you didn't want to feel dumbfounded at go time.

    I am hopeful that, being they said her tumor is small (seems big to us), that she will not require chemo.

    We will post more as the results become available.

    Thanks so much!!

  • salamandra
    salamandra Member Posts: 745
    edited January 2019
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    Hey Heartbroken,

    I want to distinguish between homeopathic and naturopathic. Homeopathic is a subset of naturopathic. It's the technique of using a super tiny dose of something 'natural'. As far as I know, it doesn't have any reliable evidence behind it for pretty much any realm of treatment. Naturopathic is a broader category of 'alternative' approaches.

    Some naturopathic treatments have some evidence behind them. Usually it's not nearly as strong - e.g., it's based on understanding how the chemicals work and guessing on how that might affect people, as opposed to actually doing multiple double blind studies. Or based on smaller self-reported studies, etc. Still, there's usually some basis that can be interrogated. Naturopathic treatments that seem promising OR seem to have no likely downside are often incorporated by 'conventional' treatment centers in an 'integrative medicine' setting. My cancer center has an integrative unit where doctors send people who want to get deeper into nutrition, yoga, supplements, acupuncture, etc. The appointments and *some* of the treatments are covered by insurance. An integrative unit sounds like a potentially really good fit for you and your wife.

    Success with breast cancer is hard to define. I won't really know that I've beat it (at least with the hormonal receptor positive cancer like I have) until I've died of something else. And even then I suppose only if they autopsy me and find no recurrence. Spontaneous (generally temporary, but temporary can be years) remission is a thing that does happen, and it makes sense that people give credit to whatever treatment method they are using, whether it is conventional or alternative. Also, sometimes a treatment can 'work', do everything it's supposed to do, and either the cancer still comes back, or it turns out with later scientific discoveries that the technology wasn't really there for a person's particular case of cancer.

    I have plenty of critiques of conventional medicine and I think there is room for improvement in plenty of areas. But I will say that the clinical trial process is truly good and useful and pretty much as reliable as anything we've got. Usually, if an alternative treatment has been around for a number of years and never 'crossed over' into integrative medicine (the way that acupuncture for chemo side effects has, for instance), it's because it did not stand up in clinical trials. That doesn't mean it can't have beneficial impact for any particular person - but I wouldn't put my life in its hands.

    I think also that sometimes people have a tendency to assume the worst about conventional treatments (maybe because of all the studies documenting what *can* happen) and the best about alternative treatments (that they will give the promised benefit with no downside or side effects).

    All that said, one thing I think cancer does is take away a person's sense of control over our fate. That's a very hard thing to deal with. The truth is, we were never in control, and we all need to come to terms with that one way or another. But I think that taking an active role in our treatment - whether in the conventional or alternative medicine front - can help a lot with feeling a sense of agency in our lives and that can be very healthy in itself, for those who feel the affinity to do that.

    A ton of conflicting info!! I just want to know the right path for my beautiful wife to continue living a long and healthy life with me. I just don't want us to choose wrong.

    This is so true and so hard! We all want to choose right. It is so frustrating to me to think that within, say, 3-10, there could be a whole new test or treatment that could be better, or that could prove that what I'm doing now is sub-optimal. But what can I do? I got cancer now, not 10 years from now, and I have to deal with it with the best that science has to offer now, even knowing that could change.

    A good outcome doesn't mean you chose 'right' and a bad outcome doesn't mean you chose 'wrong.' We are all doing the best we can with what we have. Make your decisions with thoughtfulness and care and love and it won't be wrong. You and your wife both can handle a lot more than you think you can.

  • HeartbrokenHubby
    HeartbrokenHubby Member Posts: 33
    edited January 2019
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    Thanks so much Salamadra. I very much appreciate you taking time to help us understand the differences in the natural approach.

    We are still trying to get a grasp on the terminology and abbreviations. Let's take everyone's stats in their profiles... some of it just looks like scrambled random letters, and some of it we understand.

    Thanks again!!

  • oceanbum
    oceanbum Member Posts: 3,644
    edited January 2019
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    Zambonisgirl, welcome to the place no one wants to be. But we are all glad to have each other.

    The waiting is the hardest part, for sure! I remember feeling like everything was moving in slow motion in the beginning. Once you have a plan in place everything begins to move forward. And at that point it seems like it begins to move quickly.

    I felt great until I had my annual mammogram. I didn't feel sick until they told me I was sick! My mammogram found a 7.5mm mass and pre-cancerous calcifications in my right breast. At this point I was going to have a lumpectomy. An MRI found a 1.5cm mass and a group of pre-cancerous nodules in my left breast. Once I found that I had all of that going on, even though I was BRCA negative I chose to have a bilateral mastectomy. I just felt like I had too much going on to chance otherwise. My breast surgeon totally agreed with my decision.

  • HeartbrokenHubby
    HeartbrokenHubby Member Posts: 33
    edited January 2019
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    Welcome everyone's thoughts on this...

    Thanks all!!

    https://www.chrisbeatcancer.com/two-chemo-drugs-li...

    Two Chemo Drugs Linked to Breast Cancer Spread In 2012 I wrote about a study which found that chemotherapy can backfire causing damage to healthy cells and triggering them to secrete a protein called WNT16B, which causes cancer cells to grow, invade new tissue, and resist further treatment. In 2016 we learned that chemo causes long-term immune ... www.chrisbeatcancer.com

  • Runrcrb
    Runrcrb Member Posts: 202
    edited January 2019
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    heartbroken- there is a whole section on this board about alternative treatments. That was never on my radar screen. What i can recommend is that you and your wife get second and third options, meet with breast surgeons, plastic surgeons, oncologists and radiation oncologists and ask questions until you feel informed and confident in her path forward. Find doctors who listen to you and take your concerns seriously. And I must say this - she is the one with cancer- please defer to what she believes to be the best course for her. Engage in the conversation and research but she needs to make the decision regarding her treatment.


  • hapa
    hapa Member Posts: 613
    edited January 2019
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    I understand why you're scared of doing chemo. I was too! I thought chemo was something that would bring me to the brink of death, and would ruin my health for the rest of my life. In the end, it turned out to be not that big of a deal. Your MO will give you medications to deal with side effects. Stay ahead of the gastrointestinal effects. So long as you can maintain good nutrition and hydration, you should be able to remain mostly functional throughout chemo.

    I really wish there was an alternative to chemo, surgery, and radiation that was proven as effective for my type of cancer, but unfortunately none of these alternatives have been proven. Going with alternative therapy is thus a big gamble. If you look at how different conventional treatments are for different cancer types and subtypes, it is hard for me to believe that any alternative therapy is going to be effective on all cancer types or even all breast cancer subtypes. Also keep in mind that spontaneous remission is a thing that happens and nobody knows why. There are theories floating around about all this stuff, but unfortunately the only way right now to find out if a treatment will work for you is to take it and wait and see if your cancer goes away and/or comes back. I didn't want to try something that I had no data on only to find out that it didn't actually work on my particular cancer after it was too late. So I took the conventional treatments that were offered because they are shown, based on what we know right now, to usually help people with my breast cancer subtype. Still, it's a crapshoot. But I felt chemo and surgery (and then radiation) gave me the best chance of beating this thing. And frankly, none of the treatments I've had were anywhere near as bad as the internet and society had led me to believe they would be.

    That being said, opting out of certain treatments is a valid choice, especially for folks who have small, unaggressive, slow growing cancers that were caught early. You have to balance the risk of the side effects against the benefit of the treatment. For example, chemotherapy is believed to come with a 1% risk of developing leukemia or another secondary cancer later in life. If it is only going to improve your odds of surviving the breast cancer by 1%, why bother? But if it is going to improve your odds of surviving the breast cancer by 30%, then it is worth taking the 1% risk of getting another cancer in 5-10 years. So if your cancer turns out to be low risk for recurrence, often the conventional treatment turns out to not be worth risk of side effects. Mine was high risk of recurrence and spread with no chemo or radiation, so despite being extremely unhappy about doing them and very concerned about the potential side effects, I did them.

    As for my thoughts on your linked article...when chemotherapy treatments are tested for efficacy, they outcome studied is usually overall survival. So if the chemo was causing other problems that would kill you more than the cancer does, that would come out in the study. So despite all the nasty side effects of chemo, whatever they may be, it is more likely to keep you alive than not getting chemo if you are part of the population of breast cancer patients that is shown to benefit from it. That is the bottom line.

  • Egads007
    Egads007 Member Posts: 474
    edited January 2019
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    A rather long but interesting look at Chrisbeatcancer, written by an Onc Surgeon for Sciencedaily.com:

    https://sciencebasedmedicine.org/chris-beat-cancer/


  • simonerc
    simonerc Member Posts: 154
    edited January 2019
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    Thank You, Egads007!!! Very good piece!

  • salamandra
    salamandra Member Posts: 745
    edited January 2019
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    egads thank you for the link. I spent some time browsing through the site and want to spend more when I can. He has some very pointed critiques of integrative medicine too, which I have to think about more.

  • edwards750
    edwards750 Member Posts: 1,568
    edited January 2019
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    Very informative and well written post hapa.

    I had early stage non-aggressive BC that was caught early but I still went with the conventional treatments. 33 radiation treatments after my lumpectomy. I even had the Oncotype test and scored an 11. 8% chance of recurrence which included taking Tamoxifen for 5 years which I did. I was 7 years out last August.

    I never considered opting for alternative treatments frankly because I was scared not to go with the recommended treatments and I thought doing so was like playing Russian roulette with my life. To each her own. I didn’t have unmanageable side effects either. Idk what I would have done if I had. QOL is important.

    The only advice I would give is don’t second guess yourself or look back and wonder what if..

    Diane


  • summerangel
    summerangel Member Posts: 182
    edited January 2019
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    Be aware that it is actually more common now to NOT have chemo rather than to have it. I didn't need chemo or radiation, and I couldn't tolerate Tamoxifen so my only real treatment was surgery. Of course, my tumors were low risk. But still, don't borrow trouble and assume chemo will be recommended.

  • Egads007
    Egads007 Member Posts: 474
    edited January 2019
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    Simone & Salamandra, I'm glad you found the article interesting! I stumbled across it while looking into what all the hoop-la was concerning Chrisbeatcancer. I have no problem with alternative methods, whether in conjunction with standard treatments or not. Healthy lifestyles certainly cannot hurt, and probably help to a few degrees. Every degree we earn is a bonus.

    What did greatly concern me was my perception of Mr. Wark's claims and notions.....along with what the following he had gathered may suffer in the end....and the vagueness of the 'success stories'. Carrot juice and various veggies are great & wonderful things to consume.....but a cure? Paying 100 smackers an hour for unsubstantiated healthy eating advice? (from an untrained/unlicensed person). I'm confident medical science is not sitting back saying "ok, who forgot to test the carrots?!?!"

    This is NOT a knock to alternative folks. I adopt a few alternatives myself....all good stuff....but if it walks like a duck, talks like a duck, and shouts the word CURE while making a living from it....quack quack. IMHO.

    Heatbroken & Zambonisgirl - My heart goes out to you....the beginning of this road is simply hellish. Do your research on every aspect you can get your hands on, listen/learn from your medical team, and then using your own common sense take all the info and make a plan that you're comfortable and confident with. Once the dust settles and your plan is in place, you'll find a wee bit of peace. In the meantime this amazing community is backing your both. Sending positives your way.

  • HeartbrokenHubby
    HeartbrokenHubby Member Posts: 33
    edited January 2019
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    Thanks to everyone for your replies.

    So far, we have found out that she is ER+/PR+/HER2-.

    She had a bone scan done. They said it looked good but they want to get a closer look at her cervical spine. So they want a test for that.

    She had a CT scan done with barrium. They told her that looked good except for a cyst in her liver. They want to do a test for that.

    She's has migraines for about 10 years and got checked out back then. Ironically, that's about the time we got together... lol They are going to check her head out too.

    Currently, they said she is a stage I, but they don't want that to be a solid dx until after her surgery due to her left armpit lymph nodes that they were not able to biopsy. They said in the original MRI, they looked puffy. They said that if the lymph nodes are bad, she will be a stage II.

    Blood test cane back good as well.

    Not sure where this is in the scale, but I know things can always be worse.

    I really appreciate all of you!!

    Thank you all!!

    HeartbrokenHubby

  • alicebastable
    alicebastable Member Posts: 1,946
    edited January 2019
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    Its standard to not proclaim a final dx until after surgery and pathology, so please don't think that is anything scary.

  • HeartbrokenHubby
    HeartbrokenHubby Member Posts: 33
    edited January 2019
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    Thank you AliceBastable. Not knowing what is bad or not so bad has us kinda flinching. What an F'n roller coaster ride of emotions!! I feel I'm totally taking this way harder than she is, but she is my everything.... Plus, being a worse case thinker, imma have a damn heart attack.

    She had a very bad headache today. Usually, her migraine med helps, but not with this one. We will see when the tests come back.

  • jo6359
    jo6359 Member Posts: 1,993
    edited January 2019
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    heartbrokenhusband- my surgeon wouldn't even give me a stage until after my surgery. I know it's difficult not to imagine the worst. I suffered from migraines for approximately two years after a car accident. I was fortunate the migraines went away. As a former migraine sufferer I can empathize with your wife. I don't have any words to comfort because I know my own anxiety level was off the charts. Once you have a clear plan of action, your anxiety level diminishes significantly. Hang in there.

  • Zambonisgirl
    Zambonisgirl Member Posts: 15
    edited January 2019
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    Hi ladies, we are talking to plastic surgeons these days to see about plastic surgery options during regular surgery and post surgery. Looking for feedback from ladies with this experience...

    I have 2 existing implants and now have the cancerous tumor on the left one, and up against my chest wall. My BS said I need to go smaller because I am too little and don't have enough skin once she cuts out the tumor and surrounding tissue. If that is true, then what happens to my right breast that is fine? I don't want one big breast and one small one.

    My PS said they can do whatever I want...but getting both implants to be swapped out (regardless of size) always seems to point to a double MX. Is this true?

    Thanks

  • hapa
    hapa Member Posts: 613
    edited January 2019
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    I don't understand. Is your surgeon planning to cut away some skin? Your nipple? If so, why? Is the tumor behind the nipple? Is neoadjuvant treatment to shrink the tumor possible so you can have a nipple sparing procedure an option? And are you planning mastectomy or lumpectomy? I don't understand what your BS is planning, that is going to impact your PS options.

  • pupmom
    pupmom Member Posts: 1,032
    edited January 2019
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    Hubby, I'm sorry to be blunt, but several members of BCO that I am aware of declined traditional Western medicine for alternatives, and they all died.

    Btw, my husband is pescotarian, not vegan, and I am vegan. I took the traditional route to treat my cancer, and am more than 7 years NED post dx.

    Best wishes to you and you wife.