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Diagnosed/treated 2018 -- Sharing our "what's next"

As this year is drawing to a close, thought it would be helpful to have a place to keep in contact as we move forward. Personally I have found tremendous help here and am interested in how everyone is doing.




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Comments

  • beaverntx
    beaverntx Member Posts: 2,962

    Making the first post!

    I am looking forward to Christmas this year. Last year I was tired and draggy -- had not been diagnosed yet (first "suspicious mammogram" was mid December but due to the holidays did not move on through the diagnostic process until January) but had really seen negative changes in how I felt. After diagnosis and treatment I have changed to a healthier nutrition pattern (refuse to call it a diet 😁) and have started paying attention to how much I walk with a goal of 12,000 steps a day. I had been a skeptic about how much better exercise can improve everything but tried just moving around the house after surgery and learned when I felt the most exhausted was when I needed movement the most.

    Here's to a good new year for all of us. HUGS all around!

  • ingerp
    ingerp Member Posts: 1,514

    I've been working on my annual Christmas letter and said that I was expecting 2018 to be a pretty uneventful year. Joke was on me! I won't finish my Herceptin until May 17, 2019, and will probably take a celebratory vacation shortly thereafter. The last couple of years we've had weddings and graduations so I'm really hoping 2019 is calm and restful. I've been pretty good about going to the gym throughout but am trying to make 2019 the year of less sugar--definitely my weakness.

  • beaverntx
    beaverntx Member Posts: 2,962

    Funny you mention your Christmas letter! Last year we had our letter all printed, ready to fold and address. Did not get to it before Christmas, with the intent to prepare and mail the week the last of our house guests left. That turned out to be the week the diagnostic process started and the letters were never sent. Our plan is to send two years worth at the same time...and it is looking like it might be January again. We just had new flooring installed and the house is still in disarray with house guests arriving next week. Need to focus on restoring some sense of order.

    Good to have a celebratory vacation to look forward to. A calmer 2019 would be great!



  • josieo
    josieo Member Posts: 140

    Beaverntx,

    YAY! Found it and think I have added it to My Favorites

    Yes, in remembering last Christmas it was very quiet and it had a sad feeling. I hadmy first “suspicious” mammogram on Dec 14, a second with an ultrasound on December 21, but then got stuck in the system-could not get my records forwarded and kept trying to get an appointment for what became another mammogram and ultrasound as a second opinion but was ultimately not scheduled until late January. Right at that same time, my dog became ill (she ultimately died in April) and between going everywhere with her looking for help and trying to move my own testing forward, the holidays had nothing to be happy about. I remember what became a growing sense of fear and then despair. What a truly awful time.

    I still do not have a “happy” feeling about the holiday. Have most things done, but not really planning any type of special activity. Just want to get to January and think about the year ahead.

    Keeping up my exercise and healthy eating started in earnest right before my lumpectomy, and hoping to tweak my diet even more.

    Just thankful beyond words that I found the cancer team that ultimately took care of me.

  • ctmbsikia
    ctmbsikia Member Posts: 752

    Good day to all!  2018 has been a heck of a year.  I am happy to report that I am doing well, mammo and lung scan (40 yr smoker) are clear. Just had a wonderful follow up with my surgeon this week.  She said I was good to not make another follow up appt. with radiation doc, so I'm done with that!!   I'm looking forward to a quiet holiday this year, it will be nice to not be worried, and not have family and friends keep asking how I'm doing.  I still get anxious around appt. times,  but I am hopeful that will get better and better with each passing one!  I failed way too many tests in late 2017.  I am glad to have it all behind me now!  Next up is my MO in Feb. I will be starting Prolia (failed the DEXA in 2017) I trust all will go well with this.  

    Stay well everyone, and happy holidays!

  • beaverntx
    beaverntx Member Posts: 2,962

    Welcome, ctmbslkla! We are surgery day sisters -- January 30 will remain in my mind as a day to remember. Once I received my biopsy results (Wed), things moved very quickly--saw my PCP the next morning (Thur), the breast surgeon the next morning (even though she does not usually have office hours on Friday). Both knew that I "wanted that thing out". When the BS's scheduler called on Monday re possible surgery on Thursday (just over a week from diagnosis) she said they had had a cancellation for the next day. I ended up having a partial mastectomy just 6 days after getting the biopsy results. Things after that moved at a more usual pace, although I did have hypofractionated radiation with some extra boosts, so just short of 5 weeks for that.

    I saw my radiation doc for the last time in August, after my first follow up mammogram which was clear. Next appointment is with BS who is following me, after my first post surgery bilateral mammogram in January. Suppose I will always be a bit anxious at mammogram time, or at least will be for a few years. The most reassuring part for me is that, where I have my mammograms with follow up ultrasound (still have a lumpy seroma in the operated breast) the radiologist comes to talk with me after she has seen the tests. It was such a relief last time to not have to wait for the results to be posted on my patient portal.

    Here's to a healthy 2019 and no more flunked tests!

  • beaverntx
    beaverntx Member Posts: 2,962

    JosieO,

    Glad you found it!

  • kaywrite
    kaywrite Member Posts: 38

    Hi everyone, found it! Thanks Beaver, for setting this up.

    Truly - one year ago tomorrow I went in for a brutal stereotactic biopsy, and flew out of the country the following day. Found out about the diagnosis while away, then began a harrowing journey of research and decision-making the minute I stepped foot back in the US in January.

    Lots of good things came out of the madness of 2018. I suppose that's no surprise when you come face to face with your own mortality. For me, so much was out of my control. It made sense to control what I could, which was publishing a life's work (fiction) on people overcoming grief; the meditative qualities of painting (an expensive, addictive habit); reassessing my involvement with people who were not a positive influence; making a plan for retirement; researching all the beautiful places I want to see. The making of joy is my responsibility.

    It has been a wild year, I'm still here.

    This resource was a godsend for me - as were all of the sisters in January surgery, March and April rads, Spring hormone therapy. I needed people who understood, badly. And there you all were - some of you offline friends. It's been an honor, either way. I'm glad to stay in touch.

    Happy new year!

  • veeder14
    veeder14 Member Posts: 269

    Thanks Beaverntx for setting up this thread. This is the 3rd holiday season I've had cancer surgery, plus Hysterectomy this December. It seems like all my cancer follow up scans, etc., are in November and December and all I do is medical stuff during the holidays. Hoping to get a break coming up.

    I do have a consult with my MO week after next about whether I can go back on Tamoxifen or some other med due to stomach issues with swallowing pills that irritate my stomach/throat. I also have approval for a 2nd opinion at a well known private University hospital, I'm just waiting for them to set up a date. Regardless of what occurs, I've got a vacation planned in February to a warm location! Since I missed last February due to waiting for Radiation to be set up, I'm really looking forward to getting away.

    So glad we have a means to keep in touch and support each other. Never would have made it through with out this.



  • GreenHarbor
    GreenHarbor Member Posts: 187

    Thank you Beaverntx, for getting the ball rolling. I had a mammogram on June 22, followed by a stereotactic biopsy July 5. I got the results the next day. My lumpectomy was August 23, and radiation treatments took up the month of October. I am amazed that the diagnosis and treatment process was just 4 months start to finish. I was lucky to have the physical part of my recovery go smoothly. The emotional side of things has taken longer. Each day, I feel more like myself. I also am trying to eat better without calling it a diet. For the first time in my 52 years, I’m joining a gym. I am a couch potato at heart, so this is a huge step for me! I’m trying to focus on overall health, rather than a certain weight or clothing size. The people I’ve met on these boards have a special place in my heart, and I’m grateful for the support! Wishing you all a happy holiday, whatever you celebrate, and hoping 2019 brings us each health, happiness and peace! ❤️
  • ctmbsikia
    ctmbsikia Member Posts: 752

    Oh wow B!  Didn't notice our surgeries were the same day! 

    My little story:  I had set a goal that at age 55 I would find a primary dr. and get a check up.  Well, I was a year late getting to it and  when I did, the 1st test I failed was the blood test.  Cholesterol was sky high and my Vit D was way low.  That was the 1st phone call  putting me on roustavassin and a weekly dose of 50K units of Vit D.  I also had more tests to get done.  Shortly after this visit is when I felt the lump getting in the shower one day.   I had the order for a mammo (my 1st ever!) in hand already.  I knew I was going to fail it,  I was sent straight to ultra sound and then was assigned a nurse navigator.  The tech also took extra pictures of my right side. The same day I had also had the lung screening and the dexa done.  Passed the lung, failed the dexa.  

    Onto the biopsies-I had 2 places on the left tested (the core needle w/ultra sound) - obviously the 1 being the tumor, other spot was a cyst that ruptured as soon as the needle hit. That was pretty cool to watch on the machine.  The Dr. called me the very next day with the news.    At my 1st surgical consult Dr. kept looking at my right side and ordered an MRI of both breasts, which resulted in another biopsy on my right side (the mammo machine one). That day the Dr. saw another spot on the right they recommended be looked at, so as they had  time for me later that same day, I went back in and had the MRI guided biopsy of that spot.  Although they came back negative for cancer, my surgeon still didn't like the looks of that tissue, so I had a another piece taken out during surgery.  I had every type biopsy done and have almost every non cancerous condition known to man in my right breast.  LCIS, fibrodenoma, scerling adenosis.  All words I wished I never heard in my life!  Let alone an invasive tumor with a micromet!  My surgery went well.  Like you, I developed a seroma after--doing too much and not wearing enough support.  I have scar tissue around there now, I massage it as needed, it doesn't bother me too much. 

     Onto radiation.  A nightmare.  I was extremely anxious with the length of time it took to get in, get set up, and get treated.  The machine is at the hospital which is not my favorite place.  I read where treatment should start within 10 weeks of surgery.  I was just about there. Then my simulation failed.  I asked to do prone position, they agreed, so another set up, simulation, and I finally had my 1st treatment at 9 o'clock at night!  The place was extremely busy, lots of waiting, my phone rang multiple times changing appts. around etc.  Finally settled down to the fact that I was at that machine's beck 'n call anytime day or night!  That helped get me through.   I was treated very well amidst the chaos.  I was ever so happy to ring that bell!!  Had grade 3 dermatitis, it wasn't too bad.  I went braless throughout.  I didn't care. Wore 100% cotton at all times! LOL--- It really did help. 

      I do like my MO, she's young, bright, and close by.  No real issues with starting the AI. First week was horrible joint pain, but it settled down quickly.   Hair coming out but that also has slowed down.  I have some sensitive skin now.  Always have tubes of cortizone and neosporine on my dresser for practically daily use.  Minor annoyances, I'll take this any day over having cancer!!  The protocol for me is alternating BS and MO. 

    OK, that's it.  It really is all behind now!  Good riddance 2018!!!!!!!!!!!!!!!!!!!!!

  • flowergal
    flowergal Member Posts: 73

    Hi Beaverrntx and everyone,

    I am so thankful for finding this website and all of you. It certainly has been a year " that will live in infamy forever" for us hasn't it? But we are all here and managing ;sometimes well, sometimes not! I have very few people to share with besides my husband and my dearest friends don't have a clue about what this diagnosis does to a person. I am doing my best to be proactive to improve my health - exercising daily, going to nutrition classes which are free for patients at my cancer clinic and making dietary changes that will help lower my blood sugar, chloesterol and hopefully help prevent recurrence. I am an anxious person by nature but am trying not to sweat the small stuff! I do get anxious before any follow up visits to the surgeon and MO but it passes.

    Happy holidays to all of you and Happy HEALTHY new year!!


  • rah2464
    rah2464 Member Posts: 1,192

    Thank you Beaverntx for starting this thread! I, too am looking forward to 2019 being a little less um stressful than 2018! But I finally feel that my emotional adjustment to all that has happened is stabilizing. I have never been one to dwell on things and the emotional energy spent during diagnosis and recovery surprised me. But now I feel my energy levels are climbing, I am adjusting to my Tamoxifen intake, and beginning to exercise more. So on to next year and some adventures and focus on enjoying each day as the gift it is. Thank you to all you wonderful ladies who share and comfort, counsel and commiserate. Couldn't have gotten this far without you.

  • Calliope42
    Calliope42 Member Posts: 1

    Hi all - newly diagnosed with Breast Cancer and feeling pretty positive (still)... I received the definitive news 10 days ago and haven't returned to work since. My employer has been really good about it and waiting to hear back from me. I am waiting on my surgery date. As the days move to weeks, I am wondering if I should return to work while waiting for surgery? I am trying to plan financially and don't want to go into short term disability/leave (68% of salary).

    I am just wondering how some of you managed the working part? I am a single mom and it will be a struggle (although probably feasible but stressful) having a reduced salary. What did you do?


    Edit: I tried to find a forum on this particular subject and this came closest. This is my "what's next?" question...

  • veeder14
    veeder14 Member Posts: 269

    Hi All,

    Sharing this in case it helps anyone else. I had the hysterectomy/ovary removal on 12/6. I followed the post op instructions and just had a slight pinkish discharge which was normal. However on Day 10, actually at night, I woke up to gushing red blood and got really scared. I called the hospital emergency Gyn line and a resident said to keep track of how much blood I was passing, and go to the ER if it doesn't stop. It did stop. I didn't know what caused this. Everything was fine until Day 13, actually last night when I awoke to gushing blood again! I called the emergency Gyn and a resident said the same thing as the other night, and keep my post op app't for Thursday. This morning when I woke up I started passing clots (I hope I don't gross you guys out), and called the hospital and insisted on being seen today instead of tomorrow. I just knew something was wrong.

    I was examined by the NP who said that my vaginal cuff stitches were in place but there was a small area inside that was raw and not healing, it should have been stitched better. Not her exact words but basically they screwed up. It was causing bleeding to pile up and then gush out. I was worried I over did it with exercise but didn't. She used Silver Nitrate on the area to cauterize it. Boy, that sure stings. Hopefully, this will work to heal the area and stop the bleeds. Worst case scenario having to get it restitched which I of course don't want.

    Awaiting my Jan 8th second opinion regarding restarting Tamoxifen.

  • josieo
    josieo Member Posts: 140

    Veeder,

    Oh, my dear friend, what an experience! Frightening to think of, for sure, but appreciate your sharing it. Don’t worry about grossing anyone out-you need to tell it exactly how it is. Sure glad for you that the bleeding stopped.

    It took strength and courage to keep pushing for an exam.

    Here’s hoping that you have no more health “events” and can just cruise to a quiet Christmas and New Year

    Prayers of strength and support for you.

  • veeder14
    veeder14 Member Posts: 269

    Thanks, Josie O,

    But bad news this morning, the bleeding is back. I've been on the phone all morning demanding to be seen by the surgeon (or one of the ob/gyn surgeons) before the end of tomorrow. Don't want to have this problem over the long holiday weekend, I need a solution. Finally, I'm confirmed for an AM app't with the surgeon tomorrow. Driving the almost 4 hour round trip from home to the hospital and back in the holiday traffic is a nightmare.

    Also, left a message for the Chief of OB/gyn surgical about my issues not getting resolved-no follow up from the surgeon since my Sunday midnight call to the emergency on call gyn, etc. I'm used to having the head of the dept surgeon do my surgeries but it didn't work this time. I'll let you guys know what happens.

  • AliceKo
    AliceKo Member Posts: 44

    waiting for a miracle that it will take to have a corrective plastic surgery and not be in constant pain, The miracle that even though this body has been damaged (thank you Brigham and Women's surgical team!), it can feel like mine again one day...

  • josieo
    josieo Member Posts: 140

    Veeder,

    Very sorry for your latest update, and prayers continue.

    Agree fully with your approach; you should have received a response, and you definitely need a senior person to be helping you in advance of the long holiday weekend. When you get it resolved, write a strongly worded letter to your hospital-let them know how disappointing your treatment has been, request a response in writing.

    Prayers for you, dear friend

  • MDRR
    MDRR Member Posts: 63

    Hello all

    I had my surgeries in february (lumpectomy) and march (bmx due to pathology on lumpectomy). I feel very fortunate to have had a relatively easy time so far but I'm sure glad this year is ending! My recovery required a drain be reinserted after I developed a seroma, but by June 1 I was given the green light to return to all activities. I was able make an incredible hiking trip to the bottom of the Grand Canyon carrying a 35 pound pack and camping along the way. I was also able to return to playing travel senior softball and golf. All my teammates are 60+, so it's a wonderful built-in support group. I count my blessings every day.

    I wish improved health for all of us in 2019 and beyond. For those struggling with issues right now, I hope you know we all 'get it', we are thinking about you, and we are here to support you whenever it's needed.

  • josieo
    josieo Member Posts: 140

    Dear friends all,

    Just taking the opportunity to thank all of you for your participation this year. I was blessed to interact with you, to give and receive support. I know I would not be where I am today without all of you.

    Wishing you the best of the holiday season and continued good health as we march forward together in 2019

  • GreenHarbor
    GreenHarbor Member Posts: 187

    Josie, you just said everything that was in my heart.... I will just say “ditto”! The people here have a special place in my heart for sure. Thinking of you all, and sending much love and wishes for a new year of happiness and good health. X

  • WC3
    WC3 Member Posts: 658

    MDRR:

    If you can hike down in to the Grand Canyon and back up then you are doing better than I could in my 20s! I would love to be able to do a hike like that someday though. Also Havasupai Falls.

  • MDRR
    MDRR Member Posts: 63

    Oh yes - that's also on my list. One of our guides also leads hikes to that spot and said it's the most beautiful in the canyon. I'd love to do that one and may at some point!

    Have a great holiday and let's hope for a more and more healthy 2019!

  • beaverntx
    beaverntx Member Posts: 2,962

    Hope all are having a day in which your wishes come true.

    Also, may we all enjoy a healthy 2019.

  • josieo
    josieo Member Posts: 140

    Dear friends all,

    On a quiet New Year’s Eve, I want to wish each and every one of you health and happiness in 2019.

    I know I could not have made it without you wonderful people. Very grateful for your presence and support

  • veeder14
    veeder14 Member Posts: 269

    Hello Everyone,

    Wishing all a Happy New Year and good health in the coming year. This forum has been a huge support every step of the way.

  • beaverntx
    beaverntx Member Posts: 2,962

    Had my one year mammo/ultrasound today. The good news is that the radiologist said that the new lumpiness I' m feeling is scar tissue/post surgical changes and definitely not a recurrence and"see you in six months".


  • alicebastable
    alicebastable Member Posts: 1,934

    I hope to have a lazy, non-evenful year in 2019.

    My 2018: My mom got sick and was hospitalized right before New Year's. Hubby and I both got flu at that time and couldn't visit her. Hubby's flu improved but he developed a kidney stone, which meant a night in the ER. He finally passed kidney stone and we were able to go visit my Mom, who seemed to be doing okay. She died the next day. All this by the third week of January. Let's see, February and March were mostly legal stuff, then in April I had to get all my top teeth pulled as they were breaking (smoking and clenching is a bad combination). Finally had a few decent months, then at my wellness check in late May, my PCP insisted I get a long-delayed mammogram. Well, that meant the escalating appointments through June, then lumpectomy surgery on July 11. MO wanted a CT of lungs before surgery because of smoking. Lungs fine, but kidney had a large passenger. Micromet found during lumpectomy. Scheduled re-excision, probable port installation, appointment with urologist, and more detailed kidney scan. Whew. Tired. Oncotype came back right before re-excision, no chemo needed. Yay! Let boob heal, then radical nephrectomy in September. Finally able to get radiation scheduled starting late October. First two weeks were a bitch due to soreness from kidney surgery when I was stretched out for rads. Finally improved enough to not fight going in every day, and finished in mid-December.

    Basically, screw you 2018. BUT, my nephew married a lovely woman, Hubby and I went to a great concert the day after my biopsy, I quit smoking before kidney surgery, and we did a lot of day trips and mini-vacations between medical crap events, so I think I kept most of my sanity. I've just started Tamoxifen, so I expect to either lose all memory of last year or turn into a screaming shrew for 2019. Or both. 😀

    Hope everyone has a good, or at least better, 2019 than last year.

  • josieo
    josieo Member Posts: 140

    Beaverntx, very happy for you!

    I’m dealing with some scar tissue/seroma issues myself. Although it can be unnerving, glad to know they are watching it.

    Continued good wishes as we move in 2019.