If you could go back, what would you tell yourself?

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Marissa0258
Marissa0258 Member Posts: 2
edited October 2017 in Just Diagnosed

I am just at the beginning of my battle, and I was wondering if you could go back in time, before you were diagnosed, and told yourself one thing, what would it be? I need help.

Comments

  • Kicks
    Kicks Member Posts: 4,131
    edited July 2017

    I'm not sure what you mean or are asking.

  • carmstr835
    carmstr835 Member Posts: 388
    edited July 2017

    I know what I would do differently. First, I would refuse the needle core biopsy for an incisional and I would premedicate any surgery with ketorolac. I would keep looking for a surgeon that would accommodate my wishes. I am sure my needle cores spread my cancer to my lymph nodes. I would also fast for all my chemos, I didn't know about fasting for my 1st chemo, so I missed that one, but have fasted 5 days before each chemo, this will be my 4th chemo this coming week. Also, more exercise. Everyday.

  • Lula73
    Lula73 Member Posts: 1,824
    edited July 2017

    Breathe, positive forward thinking is important to staying on track and giving you back some feeling of control over this,take it 1 day at a time/1 decision at a time, make a list of what steps you need to take/what decisions need to be made, look at all options of surgery with and without recon (including natural tissue recon vs implants if mastectomy is your choice), listen to your gut instincts and push your healthcare team if/when needed, remember at all times you did nothing to cause this - nothing you could do would've prevented it, and take time out of BC to be yourself and do the fun things you enjoy doing (hanging out with friends, movies, vacation, etc)-your mind and body need the downtime. Hope this helps!

  • Momine
    Momine Member Posts: 7,859
    edited July 2017

    Breathe and xanax. I had never even taken a sleeping pill, but a friend (who had been through it) told me to ask the doc for xanax. I only used it occasionally, but it helped put a stop to useless spirals of anxiety.

  • bluepearl
    bluepearl Member Posts: 961
    edited July 2017

    Consider, seriously, a second opinion about options. I wouldn't have gone for a mastectomy with lymph node removal but would have opted for the sentinel node and avoided the year and a half of pain that went with 7 nodes removed. I would have insisted upon the Oncotype test which I was told "wasn't needed". I had the surgical biopsy the first time and would have preferred it the second time. If two labs give out different results, get a third and go with that, especially if it is an approval cancer specialty lab. Any pain..get it treated. Don't let them bully you. AND TRY NOT TO DO THIS ALONE. You need a soft place to fall, especially into someone's arms. You need to be taken care of. I hope you go through this journey with the least amount of anxiety and pain and the results mean you are cancer free!!!! (((HUGS)))

  • ChiSandy
    ChiSandy Member Posts: 12,133
    edited July 2017

    I would have not thrown myself a “pity party” by ditching my low-carb diet in the weeks between diagnostic imaging and diagnosis. I would have listened to my MO’s admonition to avoid gaining more weight and asked her why—because I later found out how hard it is not to gain on an AI, how much harder it is to lose any weight, that fat cells secrete hormones that can become estrogen, and that the only way to lose the fat cells themselves is to have a surgeon remove them; and that obesity dramatically raises the risk of lymphedema (which I developed early on). I would have gone straight home or shopped for some non-food treat after each rads session instead of stopping in at my favorite pie cafe. I would have joined a gym two years sooner. And I wouldn’t have let fear take over my life as I waited for first Oncotype and then genetic test results. I wouldn’t have waited until my axillary seroma burst to join BCO.

    Otherwise, I wouldn’t have done anything differently.

  • Artista928
    Artista928 Member Posts: 2,753
    edited July 2017

    I'm with Sandy. I didn't learn about the fat cells stuff until after txs. I'm almost 30 lbs heavier than when I started, and I was obese to begin with. Some of it is probably meds, certainly diet, Having had difficulty at times walking on my shot knees pre-cancer I should have known to really watch it. My problem is I'm alone and bored most of the time so food, my fav thing in the world, is my crutch. This eat whatever you can get down during chemo wasn't good advice for me because whatever I did eat was crap.

  • cive
    cive Member Posts: 709
    edited July 2017

    I would have changed my doctors, both the surgeon and MO.  I ended up having no faith in either of them, but just did what they said.  To my regret.

  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited July 2017

    Marissa - please go to My Profile and post your diagnosis and what treatment has been recommended to date. You will have to make it "public" so we can see what you are dealing with.

    I would have taken more trips in the years before diagnosis. But since I don't think you're asking that, I probably wouldn't have done much differently. I had second opinions with all docs & was basically pleased with their care.

  • Dianarose
    Dianarose Member Posts: 2,407
    edited July 2017

    Would have done a complete mastectomy when I was first diagnosed until waiting for it to return 😢

  • liddybug
    liddybug Member Posts: 12
    edited July 2017

    I am waiting to see if I have bc and these are all wonderful ideas to keep in mind. I hope your journey goes smoothly.

  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited July 2017

    I would have known to ask for anti-anxiety meds. I would have been more aware of messing around/stopping antidepressants cold turkey. I would have asked for the full report of any testing I had.

    I really needed to get a grip back then. Instead I was a complete noodle. But you know what? That was the best I could do at the time. YOU, too, are doing the best you can. It needs to be all about you for a while. Be selfish.

    Hugs to all recently diagnosed. It does get better but it takes time. How much time? As long as it takes. (That was what my Stephen Minister would tell me at our weekly meeting.)

  • Meow13
    Meow13 Member Posts: 4,859
    edited July 2017

    Keeping talking with those you know that have gone through BC, they are the ones that can help. Also in the beginning take the anti anxiety drugs. Don't worry about short term use.

    Remember everyone is different and don't put to much emphasis on statistics.

  • rdeesides
    rdeesides Member Posts: 459
    edited July 2017

    carmstr835 - do you notice a big difference in SE's with the fasting? Just curious. Assuming you must or you wouldn't have wished you had done it the first round.


  • Kicks
    Kicks Member Posts: 4,131
    edited July 2017

    Operative words in the OP - before diagnosed.

    There is nothing I could say to 'me/myself/I' before DX . I don't think there is anything post DX that I would say to 'me' that I should have done different.

    There is also nothing today that I could say to the 'me' of 8 yrs ago that would be any different than what I did.

    LIVE every second possible - never come up with 'what ever' as they don't exist.

  • voraciousreader
    voraciousreader Member Posts: 7,496
    edited July 2017

    kicks..."before" being diagnosed is how I, too, perceived the question. I think everything I did in my life, up until and when I was diagnosed, prepared me for this journey and other paths i have takenthrough life. The only thing I think i would have done differently was...I would have told all the whiners that I met, "For goodness sake, get a f*~kin' life and shut the h^ll up."

  • carmstr835
    carmstr835 Member Posts: 388
    edited July 2017

    rdeesides, Yes, It was like night and day when I was on TC chemo. I did it more for the advantages in treating the cancer, Dr. Longo of California did a study of mice with breast cancer. 1/2 were fed, the other half were given only water for 2 days. Then given 1 dose of chemo. The 1/2 that were fed were all dead in 180 days. The 1/2 that fasted were all alive and cancer free at 300 days. He said, to transfer this to humans we need to fast for 5 days before rather than 2. There is a fast-like diet that he has developed, you can google it if you want to try it but can't handle the fasting. I find it easier to eat nothing than to limit my food. I also can afford to lose a few lbs, but I have so far gained it all back before the next fast.

    Now that I am on TCHP however, the side effects are much worse and not sure it is helping the side effects. I was right in bed the 3rd day after and didn't feel like myself for about a week. However I was able to function reasonably well after the 4th day post chemo. I go for more chemo again on Tuesday, so I will let you know. My last chemo wasn't my best experience. It was very long 9 1/2 hours and the nurse was not very attentive so I did not drink the water or eat ice as I usually do. I will make sure I drink more this time and it should only be 6 hours.

  • voraciousreader
    voraciousreader Member Posts: 7,496
    edited July 2017

    this song might help give you strength to get through...I listen to it often...perhaps not as often as I should, just remember that once you get through "it"... you may look back at this being not a sweet moment in your life, but a bittersweet moment because it will change you as it has changed so many of us who has taken this path before you....i guess it builds strength and character in each of us that we never even knew we had...




  • voraciousreader
    voraciousreader Member Posts: 7,496
    edited July 2017

    if you habe the youtube app...just click the arrow twice..

  • Michelle_in_cornland
    Michelle_in_cornland Member Posts: 1,689
    edited July 2017

    I have always lived my life with purpose and would not have done anything different. I chose the best doctors, the best treatment path, the best medicine. With laser focus, determination and grit, I sought out opinions from others that had gone through a bc diagnosis and learned from them. Strong willed and determined, I went through a hysterectomy/oopherectomy (my choice) and am doing terrific. Having a positive outlook on life and a no regrets attitude, I can face whatever comes my way.

    One of the best things that you can do for yourself is to have a plan, for everything.

  • secondchancetoo
    secondchancetoo Member Posts: 50
    edited July 2017

    I would have done a bilateral mastectomy the first time out.....as my breast surgeon suggested. Instead, I kept my remaining breast feeling confident it would not return...only to have it return as a more aggressive type and grade in my contra-lateral breast

  • edwards750
    edwards750 Member Posts: 3,761
    edited July 2017

    Agree with Michelle. I wouldn't have done anything different either.

    Diane

  • JKL2017
    JKL2017 Member Posts: 437
    edited July 2017

    Marissa0258, I don't think I would have done anything differently before dx (maybe a few more Marguerita Mondays but those will come after I'm done with Anastrozole & can afford the calories!) but there are definitely some things I wish I'd done immediately after I learned I had BC:

    Get a referral to an LEPT before you have surgery. Even if you only see the therapist once, get measured, get an exercise program to follow after surgery & get as much information as you can about how to avoid lymphedema. You may still get LE, but at least you'll know you did everything you could to avoid it.

    In addition, go to the gym & strengthen your upper body before surgery - it can't hurt & it's a great stress reliever!

    Last but not least (echoing the advice of others), be good to yourself & find people who will support you during this difficult time. Do what works for you - whether it's medication, meditation, prayer, therapy, support groups or something else. And don't be afraid to ask for help when you need it.

    Don't be afraid to ask questions - you are your best advocate! Know that you're stronger than you think & that there are giving individuals on this Board who will be available to provide almost anything you will need.

    Keeping you in my prayers - JKL

  • JudyGG
    JudyGG Member Posts: 8
    edited July 2017

    All of the responses you have received seem to be valid and indicate how individual this journey is.  I was diagnosed a year ago and ended up with a double mastectomy.  Don't have regrets because believe it was indicated but certainly understand your question.  The fact you are on the forum means you want info - find doctors who give you answers, then research, but at some point you just have to pick a path and travel it. The main thing I have found is that when I'm OK, I'm still NOT ok and battling anxiety and fatigue (both hard to quantify when I'm used to "getting over it and on with it"). The newest wrinkle for me was when I asked my oncologist what my re-occurrence rate is with and without arimidex and she told me she didn't know because my bi-lateral diagnosis put me in too small a group!

    Expect things to keep coming at you, deal with what you can, find a support system-

    Sorry you are starting this path but hope our thoughts help give you strength

  • msphil
    msphil Member Posts: 1,536
    edited July 2017

    hello sweetie I wouldn't do anything different not only am I now a 23yr Survivor Praise God but I went thru this not by accident I see now But so I can Inspire those just going thru that it is possible with Faith plenty Hope and Positive thinking.msphil idc stage2 0\3 nodes 3 months chemo before n after Lmastectomy 7wks radiation 5days wk tamoxifen 5yrs all while making wedding plans. Now married between chemo n rad No I wouldn't do anything different along this journey I have had the privilege to help Inspire Many here.

  • pinkvictory
    pinkvictory Member Posts: 58
    edited July 2017

    msphil, your story , being a 23 yr warrior IS very inspiring. Thank you for your post


  • Blair2
    Blair2 Member Posts: 495
    edited October 2017

    Just curious Secondchance, but did you have an Oncotype DX test done to see how aggressive your original tumor was? It seems they would have done that to chec the chance of reoccurrence (whether in other breast or body) after your first mastectomy.

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