Fill Out Your Profile to share more about you. Learn more...

surviving a recurrence

Options
7of9
7of9 Member Posts: 474

3 yrs ago in Dec I was diagnosed with a recurrence in 10/14 axilla. Jan of 2016 had surgery for ALND, full hysterectomy followed by 25 rds of full rads, 4 Taxotere. I may never be or feel in the clear, but if I could go back in time and say to myself, you'll have 3 yrs NED ...what encouragement that would have been! Zometa 2× yrly and Arimidex daily (Teva generic seems least bothersome to GI track though I take pepcid). Exercise, lowering stress, vacations or get away weekends help a LOT. God bless all those coming here for support. Shout out to the ladies who PMd me telling me Id be ok. lifelines!!!!!

«1

Comments

  • grainne
    grainne Member Posts: 119
    edited February 2019
    Options

    What a great positive post. May you have many more years NED to enjoy. X

  • grainne
    grainne Member Posts: 119
    edited February 2019
    Options

    What a great positive post. May you have many more years NED to enjoy. X

  • KBeee
    KBeee Member Posts: 695
    edited February 2019
    Options

    So glad you're doing well. Yesterday was the 4 year anniversary of my second diagnosis. Glad it is in my rearview mirror!

  • 7of9
    7of9 Member Posts: 474
    edited February 2019
    Options

    HiKBee! Yes, stress of looking over our shoulders is tough but we are both 2x survivors now...thanks for kicking my butt and pushing me to get in sooner. It sucked getting diagnosed a second time but they moved quick once we got the ball rolling and my son made the honor roll for the second time in 4th grade this year. Lots of hard fought and won milestones. So worth it. Thank you!!! Hope you are happy, enjoying life and can see the sun today.

  • TwoHobbies
    TwoHobbies Member Posts: 1,532
    edited February 2019
    Options

    Good news, 7of9 and Kbeee. I m glad to hear you are both doing well. I have hit 5 years. I would say almost six but feel like I would jinx myself if I look forward and boast six. LOL, I'm not superstitious. I feel more confident as the years add on, but of course we will not rest completely easy. I keep up my exercise, watch my diet and weight and try, but fail, to reduce stress. Still working on that one.

  • Manuella
    Manuella Member Posts: 22
    edited February 2019
    Options

    7of9, TwoHobbies, Kbee, sooo happy to read that you guys are so many years out. I am 1 year and 3 months out of my second diagnosis (or “persistence” as they called it). I worry constantly, every ache, every cough, every headache, but hoping it will get better with time. I have more good days than bad lately, steps in the right direction Sending you all tons of hugs and white light.

  • wallan
    wallan Member Posts: 192
    edited March 2019
    Options

    Hey everyone...congrats on years out from the 2nd dx.

    KBeee... you have been such a help to me from my first day getting dx a second time. So glad to hear you are doing so well.

    wallan

  • Butterfly66
    Butterfly66 Member Posts: 2
    edited February 2020
    Options

    7of9

    Hi! I just read your post!! Sounds a lot like my recurrence. My first BC was in 2008. Then in 2016 I had a recurrence also in my axilla. 16/37 nodes.

    I was so stressed out. Getting the new a second time after 8 years blew my mind anyway it's been 4 years now and I am ever so grateful. I also had a ALND and rads and chemo.

    I'm glad to hear your doing well as well.

    Hugs to all

    Butte

  • minustwo
    minustwo Member Posts: 13,116
    edited February 2020
    Options

    Yup - I'm 9 years past my first diagnosis & a BMX. 7 years past my second diagnosis with an ALND. No, I will never be the same - but for the most part I'm back to doing most of the things I love. Some are not as fast, but I forge ahead. I won't be able to haul the sail from the bow of a moving sailboat due lack of balance from neuropathy, but I can still go on the boat & see the sunset.

    Just to clarify so I don't jinx anything - those dates are diagnosis dates, not the end of treatments. Sigh. But still....

  • candilea
    candilea Member Posts: 14
    edited February 2020
    Options

    This is great encouragement, to stay positive and live as if things are well! Similarly, I think to myself, imagine being two, maybe three years out and still NED, how will you have wanted to spend all that time?

    Strength to all, hopes for years of NED!

  • Pipandor
    Pipandor Member Posts: 130
    edited February 2020
    Options

    Before my husband follows me into despair, thought I'd come here for confort and advice. I'm new on this thread and pretty bummed tonight. I am four years out from first time and an MRI mammogram has found a 7 x 5mm type 2 enhanced lesion in the same breast which is only NOT malignant at biopsy about 10 percent of the time.

    Getting a biopsy through the public system would take at least a month and it will cost me about $3000 to get a biopsy at a private clinic. We have a month holiday all lined up flying on the 18th and I don't know what to do. Oh and I have a raging tooth ache and all the dental offices are closed for the weekend.

  • minustwo
    minustwo Member Posts: 13,116
    edited February 2020
    Options

    Pipandor - Can you still call your previous MO? Ask your doc how urgently they believe this needs attention - if not the MO then maybe your Gyn. If it is critical, they will likely somehow get you in sooner for the biopsy. I'd mention your planned vacation and see what the doc thinks.

    I had a recurrence of HER2+ two years after a bilateral mastectomy with clean margins (surprise in a lymph node). My MO thought I could wait one month but not three months before getting started.

    Maybe you could schedule the biopsy for the week you return? Maybe you could get in for imaging between now & then to save some time?

    Holding you in my thoughts. Also sorry about the tooth. I hate dentists more than all other docs.

  • 7of9
    7of9 Member Posts: 474
    edited February 2020
    Options

    Pip....consider your parachute deployed and we'll try to slow or stop your decent. First off it sounds small and asymptomatic ( mm and caught on mamm). Great job catching it proactively. I hope that you land in the 10% ( why the heck not...somebody somewhere gets to so why not you?) Get that tooth fixed pronto on Monday. Why does this crap always happen the end of the week? I was diagnosed first time on a Friday and second time on Christmas eve. Oh thanks...no action just tome to wait and think about it (?×$#!!) Can you get or do you have a script for sleep or nerves called in over the weekend?

    I hope you can get the biopsy done pronto then get your next round of tests, appointments set up and go on your holiday and hopefully either celebrate or get grounded that you will have the strength to push though. ( We had a small vaca between 2nd diagnosis and surgery 3 weeks later...oddly it did not diminish the good time we had...not sure if attributing it to calm, expirience or attivan!).

    Lastly, I'm 4 yrs out too from recurrence. Mild lymphedema, tinnitus and aches that aren't worsening but steady has me convinced something not good is slowing brewing but still NED as of last fall. My turn for tests in 2 weeks.

    :(

    This stuff is shit. But I did visit friends today who's 1 1/2 yr old is going thru neuroblastoma. It doesn't diminish our shit journey but it does put things in some perspective for me. I want to be here. I'm having such a good life. I hope you are too and it both carries on for a long long long and good time.

    For what its worth I think you are so brave and thank you for sharing, coming here and reaching out for support and advice. I will be watching for responses as well. As Elizabeth Edwards said, getting tested doesnt make you have cancer or not. It just gives you more knowledge and more options ( she left out the original despair and hopelessness part...probably because she commented on from further down the road when she'd found balance).

    We stand on the shoulders of so many smart and intelligent survivors and people who fought with results they weren't hoping for. But many beat this crap. I had a friend I lost touch with whose sister was a 3 time survivor and just ran into a guy we met through our sons youth sports whose wife is a 9 year stage 4 HER survivor.

    You'll have access to an arsenal of weapons to fight this. I am praying for you and sending you good thoughts, reassurance and a hug. So manybof us will follow the same path and I hope we all come out together on the other side stronger and a ok. God bless!!!

  • Pipandor
    Pipandor Member Posts: 130
    edited February 2020
    Options

    Thanks MinusTwo. My MO told me three days ago to call her Monday if the hospital hasn't called to schedule a "second look" ultrasound which it hasn't. Problem is, it's impossible to speak to her directly and the "pivot" nurses who act as intermediaries between the MOs and patients are continually changing jobs or leaving on holidays so messages regularly get lost, including the MOs instructions, apparently, because the nurse I spoke with today said there is no record of an ultrasound request on my file. She did tell me that the delays for biopsies are long right now. My husband says we should take the same route as last time, drive to Montre and pay for the biopsy and quick results. Thing is, I don't know what's better. Leaving for a month knowing it's back or leaving for a month worrying that it's back. Leaning towards the first though, mostly because it might make it possible to start treatment sooner. Will be sad to lose that breast though...

  • Pipandor
    Pipandor Member Posts: 130
    edited February 2020
    Options

    Thank you 7of9. I got a good chuckle out of your reply! It's true, cancer insists on showing up at the worst possible times. I first found out I had it at Xmas time. But then again is there ever a good time? Halloween? Remembrance Day? Breast Cancer Awareness Day? You know it has taken possession of your mind when you start thinking "Hell, I can blow money on a biopsy. I won't need to fund a long retirement."

    No, I don't have good drugs but I might get some for round two. Recently got diagnosed with sleep apnea. It took a while to tame the beast but I am now in love with my CPAP machine and, until I got the results, I was sleeping better than I had in years. At least there is that.

    The reconstruction business doesn't interest me. Too much surgery for me. But before even considering mastectomy, don't they have to check for mets? Just the prospect of getting all those scans again makes my heart sink.

  • minustwo
    minustwo Member Posts: 13,116
    edited February 2020
    Options

    Yes more imaging - at least in the US. After the biopsy - which was with ULS at my insistance - I had a CT w & w/o contrast, an MRI w & w/o contrast (both of which the surgeon wanted before she operated) and a PET/CT for my MO to make sure it hadn't gone anywhere else before we started. Since I was HER2+, I had chemo first - TCHP. It didn't provide a complete response so after surgery I had AC chemo before rads/

    Since you're already had Herceptin & rads, there may be another route with a newer drug.

    I don't know much about oncotype tests, but I think those are given if you'[re ER/PR+.

    My gut at this time of my life would be to go on the trip. My son is grown & I've retired from working. But I can understand you're saying you'd like to know first.

    Do they have electronic communication in Canada - like My Chart in many US practices? I can send my doc a message and usually get an answer w/in 24 hours.

  • 7of9
    7of9 Member Posts: 474
    edited February 2020
    Options

    on trips....I blew the exact amount of my survival odds from my retirement fund on a kitchen reno and vacations....but Im still alive ...and realizing that I may have to get to saving again and work more! What a catch 22! If we cant cry ( out of tears from loosing my dad and boobs within 10 days, my job, my dog, my uterus, my ignorant bliss of life with a healthy kid and both parents alive) ...we have to laugh. Or we have at least earned the right to drink or pop a pill and watch Jim Gaffigan...right????

  • Pipandor
    Pipandor Member Posts: 130
    edited February 2020
    Options

    Thanks MinusTwo. I've already had the MRI, so I'm guessing I'll get an ultrasound guided biopsy and at least a PET scan to look for mets. I don't think they do Oncotype for hormone negatives. Didn't get one the first time.

    Minus, if I understand your profile correctly, you are seven years out from recurrence and that is pretty darned good. It gives me hope. How did you manage the mastectomy and what kind of follow up do you get?



  • Pipandor
    Pipandor Member Posts: 130
    edited February 2020
    Options

    7of9 I mostly cry about cancer and the worry and pain it inflicts on my family. Haven't told my daughter yet but she is looking for an airline ticket to join us on holidays so I may have to.

    I'm always looking for stuff that makes me laugh so I'm definitely going to look up Jim Gaffigan. Not much of a drinker but I do like a glass or two of wine with dinner. The "good" thing about hormone negatives is that it doesn't seem to matter at all whether you drink or exercise. Can you recommend good happy pills?

  • Pipandor
    Pipandor Member Posts: 130
    edited February 2020
    Options

    Jim Gaffigan is hilarious! Can totally relate to his Disney and bacon sketches. 7to9 thank you! Your sanity saving advice has saved the day.

  • KBeee
    KBeee Member Posts: 695
    edited February 2020
    Options

    Thinking of you Pipandor. I am a "get it done" person. Not knowing is worse stress for me than knowing. Once I know, no matter what the result, I can start planning my next steps instead of running in place.

  • Pipandor
    Pipandor Member Posts: 130
    edited February 2020
    Options

    Thanks KBee. Hoping that will happen too, but I'm floored this time around.



  • minustwo
    minustwo Member Posts: 13,116
    edited February 2020
    Options

    I agree with KBee - I want to know EVERYTHING. My docs hate to see me coming with my lists of questions. But I'm also trying to do better about seizing experiences when I can instead of waiting & worrying.

    Pip - I'd had dense fibrocystic breasts since my first mammogram before age 30. Every year for 40 years I was called back for additional screening. When BC finally appeared as DCIS (which was then still called cancer), I'd had enough. Opted for a BMX. It was totally successful with clean margins & no serial node involvement. I had TEs placed and any number of 'perfect' scans before exchange to implants 7 months later, so no other treatment.

    I went to my MO for regular check exactly two years from the original BMX and 4 months after my prior visit because I had a lump just under my collar bone. He suggested silicone from one of the implants. I knew it wasn't because I had cohesive gel - not to mention I'd had an MRI 4 months before. He suggested a CT. I countered with a request for ULS. ULS resulted in biopsy which came back as IDC. All docs were immensely surprised & horrified for me since the BMX margins had been clean. After extensive blood work & imaging, it presented as HER2+ but no mets elsewhere were shown so it was called a "local recurrence" after review with the tumor board.

    NOTE: even with a rush, it took a week to schedule the biopsy. Another week after the biopsy to confirm IDC and discuss next steps. Another two weeks to scan & get results from MRI & PET/CT. So a full month after the original appointment before we got all the test results and met to decide on a treatment plan. The plan was chemo before ALND surgery then rads.

    At that point (already a month into the process) I had a week long trip scheduled to NYC three weeks away to see four plays and a cruise booked to Alaska starting two months after that. I LOVED my MO, who has since retired. I asked what he would recommend to his mother. He said yes HER2+ is fast growing, but I could go NYC first and not worry too much. That would have put me starting treatment 2-1/2 months after he first saw the lump. But he said Alaska wasn't smart - just to far out & too far away.

    I cancelled both trips and instead had a port installed & started chemo about 1-1/2 months after my original appointment.

    Probably TMI - sorry for the length. The point is I've always been sorry I didn't to NYC first.

    Yes, I am NED. We all count dates differently. I count from surgery or start of treatment. It's 9 years next week from my original BMX. It's just short of 7 years when I had my port installed & started chemo for the recurrence. Last fall I argued & doc finally ordered a ULS and breast MRI which were clear - 5 years after completing treatment. I have a full blood panel drawn every 6 months in order to get my Prolia shots and my CA 27-29 numbers are good. Other than that, follow up is scarce - like we've all experienced. I saw the new MO every 6 months for awhile, now it's once a year.

    It's such a hard decision PIP. I'm holding you in my thoughts. Do let us know what you decide. In the meantime, good luck with the dentist.


  • Pipandor
    Pipandor Member Posts: 130
    edited February 2020
    Options

    Thanks MinusTwo. As far as I'm concerned you can't have too much information in this situation. This is something I don't like about my MO here in Gatineau. She is always in a hurry and doesn't give you all the info. She just said the lesion found on the MRI was "non specific" and said nothing about the fact that it is an enhanced type 2 lesion, which is almost always malignant. I happened to find that out from my GP who pulled up the report during an appt. for prescription renewals, explained it, and printed a copy for me.

    My plan is to contact the MO in Montreal who received the biopsy and created my treatment plan in 2016 on Monday morning. Diagnosis is pathetically slow in this region but maybe he can schedule an ultrasound biopsy (and eventually a mastectomy) for me quickly in Montreal. Depending on what he says, I might call the private clinic. The trip will all depend on timing but I would rather get the thing out before I travel, even if it means convalescing from surgery while on vacation. It's great to have bc buddies out rooting for me. Will keep you posted!



  • minustwo
    minustwo Member Posts: 13,116
    edited February 2020
    Options

    Fingers crossed PIP

  • Pipandor
    Pipandor Member Posts: 130
    edited February 2020
    Options

    Just back from the hospital where I picked up a copy of the IRM images and spoke to the onco nurse. She spoke to the MO who said to wait a couple of days more for an ultrasound appointment. We aren't talking about a biopsy here, just a "second look" ultrasound. It could be months before I get a biopsy. Last time around, they called to give me an appointment for a biopsy six weeks down the road on the day I started chemo!

    So I have an appointment at a private clinic in Montreal tomorrow to fork out $3000-4000 for a biopsy. We are under a ton of snow this morning so the drive promises to be real fun.

    I still can't believe this is happening all over again 😣

  • 7of9
    7of9 Member Posts: 474
    edited February 2020
    Options

    good for you getting it done!!!!...my outta pocket max is gonna hit this yr...complained about lymphedema and shoulder pain...my nurse practioner said no way are we waiting...had ultra sound and xray of shoulder clavicle done TODAY. NeD! Thank God I had attivan with to get through the day solo. I do not think the ultrasound doctor was thorough tho. Will be complaining about her bed side manner.

    Good night. 2 1/2 attivan day Im whooped

  • Pipandor
    Pipandor Member Posts: 130
    edited February 2020
    Options

    Good for you 7of9! Good news here too. Ultrasound showed no blood supply to the lesion or spiculated edges. He thinks it's a fibroadenoma that may have been there the entire time because I had never had an MRI. No biopsy required but a monitoring ultrasound in six months. SO happy to leave on our trip with peace of mind. Your good wishes helped me keep it together.

  • minustwo
    minustwo Member Posts: 13,116
    edited February 2020
    Options

    Oh Pip - HOORAY. Have a wonderful trip & let us know after your 6 months ULS.

  • Pipandor
    Pipandor Member Posts: 130
    edited February 2020
    Options

    Thank you MinusTwo! Now we can look forward to it. Arriba!