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Overwhelmed and heartbroken.

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  • 1redgirl
    1redgirl Member Posts: 94
    edited February 2019
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    I refused treatment after surgery and I am still alive.

    It is not possible to stage a patient before tests and surgery. In my case, lymph nodes seemed fine pre surgery, but sentinel node had cancer. I was told pre surgery ONLY 3 lymph nodes would be taken. Wrong. The policy is then to remove 1st level lymph nodes which number can vary. In my case 12 were removed. No cancer except sentinel. Lymph node dissection is miserable. I live with a compression wrap on my right arm. I also sleep with a compression wrap around my chest. I rarely think about it anymore. I have adjusted. It is however, life altering.

    My left breast had two lumpectomies. Cancer has not come back - yet. It has been 26 yrs. DCIS supposedly rarely becomes invasive regardless of grading.

    It should be mentioned that cancer is graded 1,2,3. 3 being aggressive as cells look crazy.

    Upon leaving hospital, I was given a thick book about cancer. In that book, it said a 1 cm tumor had probably been growing for 8-10 yrs. My oncologist told me that is bunk. He told me my cancer formed in 3 mos. I say b.s. to that as well.

    When I got cancer first time, I knew I was sick. I was freezing all the time. After surgeries, freezing went away. 2nd cancer, same exact story. I know when I am sick.

    Read all you can. I wanted lumpectomy with 2nd cancer, but I had 3 small tumors and thus nothing much would be left of breast after cutting 3 out.

    Removing lymph nodes is very serious. I was not nearly informed enough about the ramifications after dissection.

  • Zambonisgirl
    Zambonisgirl Member Posts: 15
    edited February 2019
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    You ladies are just awesome. Thank you all so much for your feedback <3 Tomorrow is my sentinel node biopsy and then next week I plan to schedule the surgery and get this thing going.

    Thanks again! XOXO

  • edwards750
    edwards750 Member Posts: 1,568
    edited February 2019
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    The one thing I think we all learned through this process is to be your own advocate. Do your homework so you don’t rely solely on what’s recommended because a lot of us have discovered, some too late, that the side effects are sometimes worse than the “cure.” I have heard countless women say if only they had known beforehand.

    The C book and brochures are overwhelming to be sure but you can at least have a good sense of what you might be facing with surgery, treatments, etc. and the possible fallout from these procedures. Question your doctors if you need toand take notes.

    Remember it’s your body and your life. You can and should listen to your medical team as they are the proverbial experts but it’s still your call.

    In my case had I not questioned my MO about taking Arimidex which she prescribed my bone situation might have been progressively worse. FYI the drug attacks the bones so it’s not advisable for a patient like myself with osteopenia to take it but that’s what I did for one year. I now have osteoporosis. I might have developed it anyway but a year on Arimidex didn’t help.

    Good luck. We are here to help. This website was my lifeline. I’m 7 years out last August. So far, so good.

    Diane

  • B-A-P
    B-A-P Member Posts: 409
    edited February 2019
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    hi heartbroken ,


    I haven’t read everyone’s responses but I will say this. Heal on Netflix is a great resource . I have been doing conventional treatment and holistic and had a great response to neoadjuvant chemo. Almost no evidence of disease after 4 cycles (I’m done chemo now. Waiting on surgery ). Unfortunately for me I was stage four from the get go but I truly believe my mix of treatments helped me get there. My doctors were shocked and have now decided to treat me curativly which is a big deal when you’re stage 4 !

    I took wheatgrass everyday except a few days during chemo. My diet was somewhat Keto without all the bacon and cheese. I cut out dairy, red meat, alcohol, most carbs and sugar , ate tons of veggies which I know being vegan you guys do.

    I exercised when I recovered from chemo, changed from plastic to glass for most things , filtered water, chemical free makeup ect. Now I take supplements and am waiting on my mastectomy. I also occasionally did acupuncture. I meditate daily and try to keep my stress low.

    With all that being said some might say that my chemo did most of the work, some might say I have a special biology (although at 31 which breast cancer , I don’t call me special in the way I would like lol ), some may say I’m he small percentage that is going to be an outlier or exceptional responder ect. But I truly believe supporting the body through treatment helps. With your wife being so active and eating healthy I think she won’t have too much trouble with treatment. I feel like the mental part of it plays a huge role.

    It is scary. I’m still going through the motions. Make sure when doing natural therapies , that they don’t interfere with treatment :) of you have any questions you guys can message. Your wife reminds me of me , my tumours were small but they were in my chest wall as well.

  • hapa
    hapa Member Posts: 613
    edited February 2019
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    B-A-P - congratulations! Curative treatment when you're stage IV is a really big deal. Only now are people even believing it's possible!

  • HeartbrokenHubby
    HeartbrokenHubby Member Posts: 33
    edited March 2019
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    Hey everyone, sorry to leave everyone hanging...

    My wife had her node biopsy a couple weeks ago, in her left armpit. They took two sentinel nodes and two small node's near the second sentinel. We were relieved to hear all nodes came back negative!! :)

    Her surgery is scheduled for 3/13/19. She will have a left mastectomy with reconstruction and have her right implant replaced.

    We are looking at silicone this time. Her implants now are saline. I read some info that said there is new findings that breast implants with a "texture" to them, are causing breast cancer at a rapid rate!! Curious to hear everyone's thoughts on this. We are going to meet with the plastic surgeon again to discuss this and our options. She will not be having the implants under the muscle as she will be continuing her body building after recovery.

    My wife does not want radiation or chemo. She said if the doc really, really insisted on radiation, she may. She said she will not do chemo at all...

    Again, sorry to leave everyone hanging...

    We read every single one of your journeys and all your suggestions and well wishes, even if we may not reply to them.

    Thanks SO very much everyone!!! ❤

  • scrafgal
    scrafgal Member Posts: 412
    edited March 2019
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    It's lymphoma that is a very small risk with textured implants--not breast cancer....

    With negative nodes, the recommendation likely will not be radiation. Chemo is another story because it is often based on the type/aggressiveness of the tumor, regardless of whether nodes are negative. Chemo is survivable, although not pleasant sometimes. Maybe consider doing the oncotype test to see how that might guide your decision.

  • jo6359
    jo6359 Member Posts: 1,993
    edited March 2019
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    heartbrokenhusband-great news on the negative nodes. Best of luck to you and your wife.

  • cindyny
    cindyny Member Posts: 1,231
    edited March 2019
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    Great news on the nodes! Radiation - do some research, as there are some types of radiation that can be done at the time of surgery. I'm not sure of all the requirements but one is called IORT. Best wishes!

  • HeartbrokenHubby
    HeartbrokenHubby Member Posts: 33
    edited March 2019
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    @Scrafgal- I believe she had the oncotype test done and it came back 5% aggressive, I believe. I am confusing my tests...

    My wife is working with a naturopath doc for about a month now and while recovering. We have been vegan and the diet they recommend is right where we have been. We did find out my wife is allergic to wheat gluten. Lol never guessed that!! Seemed to have gotten rid of her migraines since she has avoided gluten. Occasionally we will test this and we will get a vegan pizza... she ends up with a headache. I wonder if the wheat gluten allergy was contributing to inflammation in her body, and what may have helped her develop breast cancer.

    Thanks all!! Thank you for the well wishes!! ❤

  • CaliKelly
    CaliKelly Member Posts: 198
    edited March 2019
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    Happy to hear the nodes are negative! Excellent news for great prognosis. I'm glad to hear that your wife will get her implants on top of the muscle. My first rec on was under the muscle and it was terrible for weight training! It was always jumping up and down with every rep😂 Eventually, due to tightening up from radiation, I had the implant replaced when I had to have latissimus dorsai flap surgery, and the new implant placed on top of ther muscle. So much better!!! More comfortable and I can do my chest workout again. Good luck to you and your wife, she'll be pleasantly surprised how little the mastectomy will affect her weight training, in time.💖

  • manc
    manc Member Posts: 28
    edited March 2019
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    Hi HeartbrokenHubby I just noticed you mentioned the gluten allergy. I was diagnosed November 2016 primary BC doing well so far but recently found out I'm celiac. There isn't meant to be a link with celiac and BC but I also wondered if the possible inflammation in my body triggered something If you get any info from your oncologist I'd be interested or if anyone else knows anything about this . Thanks and love to you and your wife.

  • dtad
    dtad Member Posts: 771
    edited March 2019
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    Hi everyone..another Celiac with BC here. There has not been a definitive link but I agree the increase in inflammation could not have helped!

  • HeartbrokenHubby
    HeartbrokenHubby Member Posts: 33
    edited March 2019
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    Hello all,

    Today is my wife''s surgery...and I have not been able to sleep tonight. She seems to be sleeping well, which I am glad for, so she sets herself up for a successful day.

    She will be having the tumor removed, and mastectomy on the left. Reconstruction with nipple sparing. They will be using silicone implants on both sides. She will be having her, 15 year old saline implants removed. She is very happy about this, for appearance reasons. We made sure that the plastic surgeon was not using the "textured" implants. She said she uses smooth. We have been seeing the recent research about Large Cell Lymphoma, and it's connection to textured implants. The surgeon knew all about it and set our minds at ease.

    I have armed my beautiful wife with a wardrobe full of Wonder Woman comfies like underoos, pajamas, slippers, and even a hooded onesie!! Lol Even got her a Wonder Woman blanket for the recovery room so she can start her recovery right!! :) She loved Wonder Woman as a kid, and I just couldn't help myself!! Finally, an expensive purchase she didn't wanna kill me for!! LMAO!!

    @ CaliKelly, she relates so much with you, as you both seem to be of similar mindset. :) Thanks for the well wishes!! She is eager to start training again. She, I mean WE, have been taking this opportunity to eat and drink the "vegan junk" that she typically avoids. We will be trying our very best, after her surgery, to ensure more of a whole food plant based diet than we were doing prior to diagnosis. We are not proud of what we have been eating for the past week, but it's our way of saying goodbye to the "not so bad for you" foods. Lol

    @manc and dtad, my gut tells me that we will hear more about the relation to Celiac and inflammation in regards to cancer. It makes sense, right?? My wife and I have been taking the efforts to adjust our diets to remove inflammation in our bodies. Though she body builds, I technically should be the one loaded with cancer. Inflammation is my middle name!!!!Lol I am the reason we are vegan. I had total body inflammation, most if not all of it disappeared two to four weeks being vegan. Been this way for a year and a half now. Never cheated on this diet and never will!! We will let you know what the oncologist says. Haven't even met the oncologist yet. They said after surgery, we will meet.

    Thanks to ALL of you for making us feel welcomed, and more importantly, making my wife feel like she is not alone. ❤

    We will fill everyone in later.

    We wish the very best to all of you and hope for cancer free lives to all!!



  • dtad
    dtad Member Posts: 771
    edited March 2019
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    Good luck with your wife's surgery. She is very lucky to have such a supportive and loving husband. She will need you in the upcoming months. Just FYI Celiac Disease has always ben associated with an increase in lymphoma. Keep us posted on your wife's progress...

  • HeartbrokenHubby
    HeartbrokenHubby Member Posts: 33
    edited March 2019
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    @dtad, thanks so much for the kind words and info about Celiac.

    We will let everyone know. :)

  • jo6359
    jo6359 Member Posts: 1,993
    edited March 2019
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    heartbroken- best of luck to you and your wife today. I'm very pleased you have a plan in place and it sounds great. You and your wife will definitely be in my thoughts today. Speedy recovery

  • HeartbrokenHubby
    HeartbrokenHubby Member Posts: 33
    edited March 2019
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    @dtad, thanks so much for the kind words and info about Celiac.

    We will let everyone know. :)

  • HeartbrokenHubby
    HeartbrokenHubby Member Posts: 33
    edited March 2019
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    @jo6359, thank you so much!!! What she really wants is coffee now. Lol

  • CaliKelly
    CaliKelly Member Posts: 198
    edited March 2019
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    Best wishes for positive outcome , and speedy recovery. Listen to the surgeon's instructions, post OP, if she's too active after surgery, the hated drains will drain more fluid, and stay in longer! I thought, why not just go to the gym , do a light workout?, (My dr. said 6 weeks! No gym!) Because I was a little too active, my drains stayed in 3 weeks! Ugh. So, tell her, take it easy, the drains will come out sooner. 4-5 days, I took the pain meds, then they were not needed. So be couch potatoes for awhile! Everyone hates those dang drains😉Good luck! 💗

  • HeartbrokenHubby
    HeartbrokenHubby Member Posts: 33
    edited March 2019
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    @CaliKelly, thanks so much for the info!! I'm sitting with her now in pre-op, waiting her turn for the surgeon. I relayed the info. I got a squinted look and a "hmmmmm" when I told her no gym for 6 weeks. Lol

    Gonna have to tie her to the couch!!


    Thanks again!! :)

  • CaliKelly
    CaliKelly Member Posts: 198
    edited March 2019
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    That's the same look and hmmmm, I gave my doctors 😉. 6 weeks, no gym! that's kooky talk! Just don't let her heart rate get elevated, that causes more drain output, and she will want the drains out ASAP!



  • HeartbrokenHubby
    HeartbrokenHubby Member Posts: 33
    edited March 2019
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    @Calikelly, good to know!! Thanks!!

    She is still in surgery. First surgeon is done. Said the old implant, the tumor, and tissue was removed all together perfectly. Said everything went awesome!! Second surgeon is in there now to finish up. So far so good!!! ❤

  • CaliKelly
    CaliKelly Member Posts: 198
    edited March 2019
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    Fantastic! Great news, keep us updated 💜

  • jo6359
    jo6359 Member Posts: 1,993
    edited March 2019
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    Glad to hear everything is going well.


    Calikelly- I agree with you regarding not going to the gym. My surgeon encouraged Activity. Within 3 days post-op I was already walking a mile. I was walking three miles daily before my drains were removed 8 Days post op. I was NOT using weights. I was doing active assist and active range of motion exercises. I also had full range of motion within 5 days post-op. I started running slowly 2 miles within 2 weeks post op. I had my surgeons approval every step of the way because I did not want to take any chances. I never took prescription painkillers. I did not experience any pain only minimal discomfort from the drainage tubes. I'm also friends with several women who had bmx with reconstruction who never had to take painkillers and who were walking within 6 days after surgery with their surgeon's approval. None of them were using weights. As a therapist, I would most definitely stay away from strenuous activity and weights. Listen to your surgeon and listen to your body.
  • HeartbrokenHubby
    HeartbrokenHubby Member Posts: 33
    edited March 2019
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    Recovery was a breeze!! She was awake and talking right out of surgery.

    In our overnight room. She's eating finally since last night.

    Long day... thanks all!! Goodnight!!

  • cindyny
    cindyny Member Posts: 1,231
    edited March 2019
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    Great news! Get some rest. Thoughts and prayers are with you both.

  • jo6359
    jo6359 Member Posts: 1,993
    edited March 2019
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    Great news. Rest.

  • HeartbrokenHubby
    HeartbrokenHubby Member Posts: 33
    edited March 2019
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    Question...

    Is it normal to not have much fluid in the drain tubes 13 hours from surgery??

    When we were at the hospital, there was a good amount of fluid to be drained. Left the hospital a little past noon, drained about 4pm, then drained again about 9pm. Total accumulation with two tube in her left side, tube 1 had 25cc and tube 2 had 27cc. Contacted the surgeon, she said that's not concerning.

    We did notice that while doing the tube squeeze thing down the entire length, the tube will stay compressed for a long while. We are compressing the collection bulbs after draining, to keep the suction.

    To be concerned??

    She also said she's been internally shakey, or vibrating feeling in her whole body.

    Thanks!!


  • CaliKelly
    CaliKelly Member Posts: 198
    edited March 2019
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    The lack of fluid I don't think is a bad thing, too much fluid is probably worse. Less fluid means drains come out sooner!😃👌One thing that she'll notice as she's healing, nerves that were cut trying to make contact with the other cut end. It feels so weird, like a shivery ticklish pain. Maybe that's the shakey vibration feeling, or could just be reaction to anesthesia. The nerve healing sensation goes across from one side of the chest to the other. So friggin weird! If the doc isn't worried about lack of drain output, I say good! Drains are everyone's hated little friends 😉Best wishes to wifey, I'll do some reps @the gym for her!💗