Diagnosed 9/8 - wondering about speed of first steps

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AbbyRhodes3
AbbyRhodes3 Member Posts: 41
edited September 2020 in Just Diagnosed

Hi, forum members. After two mammos, an ultrasound, and a core biopsy I got the word from my primary this week that I have IDC and the size is 1.3cm. That's all I know so far.

If the rest of this post is tldr; for some, my question is: For those who have been through this, how long was it between diagnosis and first steps for you? Between first steps and first treatment? Is a few days getting care started not unusual?

Asking because due to Covid, working from home, and housing/construction issues where I've lived and worked for 20 years, I drove north (again) in between the date of my biopsy and the results- and I'm planning to live in my hometown during treatment. There's an excellent breast care center in reach, here, and I can see my family every few days, my mom any day, etc. I can't deal with this alone in a two room apartment.

If I'd stayed where I live/work normally, I'd probably already have been in for a consultation: My health group there had phoned me to establish contact at 9:20am the day after my diagnosis. I've kept on it, though - and did the work to get my records from the city to the cancer center here. I got confirmation on Friday that they have what they need to start triage and to get me in - and I'm hopeful I'll hear from them about first steps tomorrow or Tuesday.

I'm kicking myself hard, right now. I went from Nov 2017 until this August w/o a mammo. I would have sworn I did one in 2018, but can't find records for it. Also, I had a date for one this past March that got bumped and then cancelled by my health group due to Covid. Another five months gone. :\

I've had all the reactions I've read about on this forum - and thank you to all who have posted/replied on other threads, because it's already been helpful. I've had brain fog so thick I couldn't think straight, fears of any twinge or ache being related, fear of it having spread, fear of having forked my chance to enjoy the next stages in my life. I'm okay for a few minutes or hours, and then I'm not. I'm much better in the AM than I am after 8p or 9p. I'm aiming to become a morning person.

I see many reasons to be encouraged by the stats on this site- but right now I'm mostly scared and wondering how far down this dip in the roller coaster ride goes. Supposedly one half of a percent of all women called back for a second mammo get diagnosed. That number seems so damn small when you're in it, all at once.

Comments

  • Anonymous
    Anonymous Member Posts: 1,376
    edited September 2020

    Almost 2.5 months for me and, frankly, no one seemed real concerned about the speed vs the state I presented at. They didn't start to shut down my ovaries until 7 weeks after diagnosis, which was required for the drugs to start (in December). From first examination to final decision about pathway/treatment took 5 weeks. But - I am in a nationalized health system, was funneled through a far overworked health authority, and a case that kept getting more complex requiring a bunch of scans and two sets of biopsies. I do know that early stage ladies can zip right through the system here and be on the surgeons table in a week or two.

    A few days to treatment won't matter, especially if you can be in a better place near a support system. Its not unusual for ladies to take an extra bit of time to get a second opinion or seek out a specific surgeon. And don't kick yourself for missing a mammogram or lament what could have been - whats done is done and now you just need to focus on managing this in the here and now.

  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited September 2020

    For most people, breast cancer is not am emergency in the sense that it needs to be taken care of tomorrow. That’s not to say it should be neglected, but once you have all the biopsy info and meet with your oncologist to map out the next steps, you’ll have a clearer time line. In my case, between second opinions and coordinating the surgeon and plastic surgeons schedules, it was almost 2 months after my initial dx that things started moving. I know some people just want everything done immediately but if you’re seeking a second opinion or trying to coordinate surgeons schedules it may well take longer. In the end you need to go with what makes you comfortable! Best wishes

  • bcincolorado
    bcincolorado Member Posts: 5,758
    edited September 2020

    I am sorry you are finding yourself here and know you are worried. First off, stop and breathe a minute. It is really ok to do that.

    I was diagnoses in August and did not have my first surgery until November because after meeting with the doctors they ordered additional tests to be done before my surgery. I could have done it a little sooner but we had a wedding we were going to at that time and they said it is was ok to wait a few a weeks so we did.

    Talk to your doctors and they can work out a schedule that fits you as well and them. Since I worked I wanted to work all week before my surgery and have weekend at least I did not have to take as "days off" to start with. If you are home and need and alone you may need to get someone to help you at home depending on surgery you have.

    Best wishes to you.

  • Nottodaycancer2020
    Nottodaycancer2020 Member Posts: 27
    edited September 2020

    sorry to hear about your diagnosis. I know your emotions must be all over the place. It took me about 1 month to start treatment. I was diagnosed initially in 6/25 and started chemo on 7/24. Once I was established with a cancer center I did more testing to see if the cancer had spread anywhere. Once that was done I had a port placed for chemo. I was definitely quick to get appointments done and start chemo...I did not want to wait around.

  • AliceBastable
    AliceBastable Member Posts: 3,461
    edited September 2020

    You're getting way ahead of yourself with rather dire speculations. And lay off the guilt on timing, it's a fairly small tumor that might not have shown up on earlier mammograms.

  • 2019whatayear
    2019whatayear Member Posts: 767
    edited September 2020

    When I went for my first visit to my Breast Surgeon she said that my surgery wasn't a medical emergency--it was my emotional emergency. She said this with compassion and professionalism you can't see when I write it out. Like you, I wanted to get the cancer show on the road! I wanted to schedule a BMX right there. She talked me down and agreed that I should have genetic testing (my grandmother died of ovarian cancer by age 60). So I was diagnosed on 5/6/2019 I had my first appointment with my Breast Surgeon on 5/13/2019. I had genetic testing on 5/16/2019. Had my first meeting with my MO on 5/23 and the RO on 5/29 Monday June 3rd I got the genetic tests results back that said I had the BRCA 2 gene- so I canceled the 6/5/2019 MRI that was scheduled for my breasts- because I had decided if I had a genetic mutation the boobs had to go. I called my BS as soon as I had the BRCA2 test result and asked to scheduled a BMX with no reconstruction.

    They said they needed me to go for a plastics consult so I could give informed consent to go flat. This was the most annoying part of the whole process. Anyway I said fine. The nurse said if you decide not to do the reconstruction we have 6/25 set aside for you. I said I don't want reconstruction so is there anything else I need to do to make sure to keep that date. The nurse said I needed medical clearance from my PCP. I didn't have a PCP at the time! So I found a PCP and got an appt on June 14th at 8am for surgical clearance then at 11am on the same day I went and had my plastics consult. Told him thanks for the exam but I was going to go flat. I called the BS office from the parking lot and confirmed I wanted to have a BMX with no construction on 6/25. I had a pre op appt on 6/20/2019 and had bloodwork done --surgery on 6/25/2019.

    Path results from the surgery were given to me on 7/3 from the BS and then I went to see the MO on 7/3 as well-and got a couple drains out I had a PT session on 7/8 to learn about lymphadema and get measured for a sleeve. 7/9 I had a pre chemo CT scan and an Echo--and got the other surgical drains out! Then on 7/10 I had a pre chemo bone scan. On 7/17 I had an MRI to check on a spot that was seen on the bone scan - then I had an appt with my MO and then that same day I had a port put in. (on 7/18 got MRI result- spot was a bony island - phew) On 7/24 I had my first A/C chemo treatment and the next day had appt on where I got a sleeve and gauntlet for my surgical arm.

    **** So as you can see LOTS of appointments. **** 5/6 to 6/25 diagnosis to surgery and then a month to chemo. Right after I was initially diagnosed I had one purpose and that was to get rid of the cancer asap. I pushed to get in to see the BS as soon as possible and to get surgery done as soon as possible. Once I had the surgery I didn't want to start chemo until like mid August but my MO was like, no time like the present, it's been long enough, the sooner you start the sooner you are done. She was right it's better to start chemo as soon after surgery as you can- if you need chemo-.

    Being on top of my medical needs helped me feel like I had some control over my situation. If it seems like a lot to juggle, don't hesitate to ask for help and/or to contact a nurse navigator. They want to help you navigate the system.

  • Jleath
    Jleath Member Posts: 7
    edited September 2020

    I am grateful to be here and read all of the comments. I was diagnosed on 9/11. IDC 2.5cm. That’s all I really know.....I have made myself sick trying to interrupt my pathology report. I should probably leave that to the professionals, but I am just scared. I have been reading multiple threads about preparing for the journey and am grateful for the vast supply of information. AbbyRhodes3.... let’s kick some cancer butt!!!!

  • windingshores
    windingshores Member Posts: 704
    edited September 2020

    Do you have any more info from the biopsy?

    I had surgery two weeks after diagnosis but then there was a longer delay in deciding whether to do chemo ( if hormone positive and HER2 negative, a test called the Oncotype Dx is usually ordered after surgery and gives info on whether chemo would be of benefit or not) or only hormonal meds.

    1.3 cm is on the small side

    Many of us are doing fine !

  • mtspacekace
    mtspacekace Member Posts: 157
    edited September 2020

    Waiting and not knowing is the worst part of the process... once you meet with your doctors and they get a plan of action into place, the worry kind of goes away. It was almost a month between my diagnosis and first official step I guess. It was almost 10 days between diagnosis and meeting with my medical oncologist, who explained everything, and those 10 days were the worst. After, I had to wait another week for HER2 testing from Mayo Clinic before they knew the type of chemo. It was about a month from you have cancer, to getting my port put in and then chemo. I will not have surgery until 6 rounds of chemo are complete. Hang in there. It’s not a fun journey, but it’s not as bad as I imagined it in the beginning.

  • Moderators
    Moderators Member Posts: 25,912
    edited September 2020

    AbbyRhodes3 and Jleath, we're sorry you have to be here, but glad you found such this wonderful group of people!

    Please keep us all posted as to how things go for you. Let us know if we, Mods can be of help.

    Warmly,

    The Mods

  • Melbo
    Melbo Member Posts: 346
    edited September 2020

    The waiting and uncertainty is the worst part. At least once you start treatment you know you're doing something.

    It was exactly a month from the day I went to the OB-GYN to get a referral for a mammogram/ultrasound and the day I started chemo. I saw the OB-GYN on 7 July, had my mammogram/ultrasound on 10 July, biopsy on 15 July, news that it was IDC cancer on 16 July, met with the surgeon on 21 July to learn the full pathology of the cancer and to get an outline of my treatment plan, then met with the oncologist on 28 July, and got a date of 7 August for port surgery and first chemo. My surgeon said 28 days from the time of the pathology to getting started is what they aim for at my medical center for those who are HER2+ (like me) since HER2+ cancers grow fast.

    No matter what your final diagnosis is or what your treatment plan turns out to be, the forums here have been awesome for me to connect to other people going through similar treatment with similar diganosis.

  • AbbyRhodes3
    AbbyRhodes3 Member Posts: 41
    edited September 2020

    Thank you very much for the info- it helps me have perspective. And you're right, it might not have shown with dense breasts. I got the impression from our convo that the radiologist just did catch it this time.

  • AbbyRhodes3
    AbbyRhodes3 Member Posts: 41
    edited September 2020

    Thanks, @SondraF, for the feedback - it does help with perspective. And that could be very true; I got the impression from our convo that the radiologist just did catch it this time.

  • AbbyRhodes3
    AbbyRhodes3 Member Posts: 41
    edited September 2020

    Thanks, @jleath, mods and everyone. I'm still learning how the thread works on this board - doesn't seem we can easily reply on each post, so please accept my thanks, all - I have a better perspective on next steps and possible timelines. I'm not going to slack on pursuing my own next steps, but I think now that the center has my records I will let the wheels turn w/o me for one day. Then back on it and on them, too.

    And @jleath - absolutely, we will! We have to be our own best advocates - and I'm guessing this place will be of great help in the months ahead.

  • Ladyc2020
    Ladyc2020 Member Posts: 197
    edited September 2020

    Abby - I remember those first days and weeks was the most scary and anxiety inducing time for me. And this was just last month! It’s amazing what time, appointments, knowledge and a plan can do to ease those fears. It’s a definite rollercoaster for sure.


  • AbbyRhodes3
    AbbyRhodes3 Member Posts: 41
    edited September 2020

    @ladyc2020 - thank you for sharing; it gives me a little hope every time I hear that there is less anxiety once things get going. I had a couple of days where I was able to feel and function better - but I'm so all over the place.

  • Ladyc2020
    Ladyc2020 Member Posts: 197
    edited September 2020

    Abby - I hope you are getting past some of the worries and fears. I look back at some of my early posts ( here and elsewhere) and I was terrified. My doctors were great and though some of the extra tests took time, I’m so glad it was done.... it meant I could make the best choice on what to do for surgery without a bunch of unknowns. I also had time to get a second opinion which was the same. What is next for you now??

  • AbbyRhodes3
    AbbyRhodes3 Member Posts: 41
    edited September 2020

    @ladyc2020 - I have been struggling hard since the 8th of the month, that's for sure. I had a couple of days where my mood was at least a little better- but mostly I'm so scared. I'm really hoping the terrified feeling will abate for me, too, once I'm underway.

    It's two weeks tomorrow since the diagnosis, and I'm going for my first consult. I'll be meeting with a surgeon, oncologist and a radiation specialist in the AM. Thankfully, my sister is able to take the day and go with me- so we can talk on the way over (hour long trip) and she can drive on the way back and let me process. She has to Zoom in on the meeting due to Covid restrictions.

    I scheduled an online conference with New York Presbyterian back 'home' for a second opinion and I think I will follow through with that- especially since we can do it online. NYP is a twenty minute walk from my apartment, and one of the top hospitals/programs available. Part of me is feeling like I'm nuts not to go back and be treated there. Only problem is that due to Covid I still need to work from home - so it would mean months of being almost entirely alone aside from the cat and the door guys to chat with in our building lobby. I have a couple of close work friends who I could call in an emergency, and who would likely come over to visit here and there if I ask - but something tells me i need to stay here where I'll have my mother, sister, a close friend, nieces, my brother.

    Sorry, I know that's both a little TMI and also something I have to answer for myself- but feedback from anyone who has had to kind of go it alone is welcomed, too. I just have to think that'd be really rough.

  • Ladyc2020
    Ladyc2020 Member Posts: 197
    edited September 2020

    hi Abby - it sounds like you have things going with the consults, that's great. I understand about not being sure where to have treatment, but you can have second opinions via zoom or just review slides... and make a decision later once you know what you are going to do. I had a second opinion 3 hours drive away and was able to do it all via zoom, but I do know the surgeons want to meet in person. I ended up choosing the closet location for surgery, due to various factors. The biggest thing I learned was That waiting a few weeks is ok to ensure thT all tests are done and I could make the best decision.


    my family has not been able to come visit due to Covid. I know how much that sucks being alone. My friends have dropped off meals and the neighbors dropped off gift cards. My ex stayed overnight with me for one night. Depending on your treatment plan, you may not need a lot of additional support.

    All the best to you!

  • AbbyRhodes3
    AbbyRhodes3 Member Posts: 41
    edited September 2020

    Thanks for the feedback, @ladyc2020 - I hope your friends will continue to be there for you and that your family can visit soon. I am going to go with treatment here in my hometown. First chemo late next week. It sounds like a rough course - I will have to be proactive with anticipating and managing side effects and pushing through the 18 weeks of chemo (6x every third week regemin).

  • Lilir
    Lilir Member Posts: 58
    edited September 2020

    I am on the same boat. I had been screened as high risk since 2008 = MRI every year = frequent biopsies. I skipped the MRI for two years because, well, I wanted to be in denial. I have to say it was bliss going for my mammogram ultrasound only and being told to just go home and come back next year. It was an error, but I don’t regret it. First time in many years that I was not treated like I already have cancer. This year, my doctor strongly encouraged me to go get an MRI. Luckily, I listened. Bilateral masses. Right was seen on ultrasound. Biopsy showed IDC. Pathology looks promising to me, but I don’t have HER2 yet. Left breast. They could not see the mass on ultrasound. So, MRI biopsy. I am traumatized. That’s all I can say...... My phone is typing funny. Grabbing the laptop to give u pointers

  • Lilir
    Lilir Member Posts: 58
    edited September 2020

    So..... waiting sucks. There is a thread here for newly diagnosed. I went on there and picked up a few pointers. I am writing here what I have been busy doing. Hopefully you and others will find it helpful.

    First couple of days were rough. Fog, anxiety. Crying. Optimistic. In my mind, I had everything from mastectomy to chemo to radiation etc...Truth is. I do not have a clear path yet. Hard pill to swallow for me.

    #1 Against family advise, I chose to tell as many people as I knew about my diagnosis. My family has a belief that people's bad energy can get on your disease or something wierd like that. I found the opposite. I spoke to over 14 women and have gathered a bunch of information and a bunch of referrals to oncologists, surgeons, and plastic surgeons.

    #2 I already had a relationship with a surgeon, so I called and made an appointment. During my second biopsy yesterday, I picked the girls brains at the breast center. Found out my surgeon has a team that she works with. I have names of recommended Oncologists, Have an appointment with one, but am now waiting to see what my surgeon says. Appointment next Tuesday.

    #3 I read many of the threads in the newly diagnosed section of this site. That day, I gathered all of my paperwork. I also made an appointment to see my primary doctor (had not thought of that!)

    #4 I had been taking zoloft at a super low dose for PMS. My primary increased that to a clinical dose. She also prescribed a little xanax just in case. I only took a 10 pill prescription of that because it can be habit forming. We talked about a possible pre-operative consult that will include EKG, XRAY and whatever labs anesthesia might want to see. On that day, I will also get my updated tetanus shot. I forgot to ask, but I need to ask about shingles vaccine. Already got my flu shot this year.

    #5 My mood swings have lessened. I am trying not to let my emotional brain take over my rational brain, but it does not always work. I let myself cry, but I try to suppress thoughts about information I do not already have. (NOT EASY).

    I wish you luck. Will share any other tips.....

  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited September 2020

    Abby - I'd hold off on telling everyone for now. I've been on these boards 12+ years. It's hard to predict how your "friends" will react and you don't need the extra stress of taking care of their feelings too. And you can't take it back once you're spread the news.

    Pick a chemo thread - like September Chemo and join to go through it with others in the same place. I read the thread from the month before too. Stay off Google.

  • AbbyRhodes3
    AbbyRhodes3 Member Posts: 41
    edited September 2020

    @lilir- thank you, and I wish you and all of us the very best of good luck and good medicine. Thanks for the tips. Am going to be talking with the nurse navigator tomorrow and making lots of notes as well.

    @MinusTwo - Thank you for that perspective. I know I heard some negative (judging) things out of some coworkers when a manager went through her treatment some years ago. I'll be working, and on zoom calls so I'm not sure how effectively i'll be able to not share it - but I did order a good wig which might help keep it under wraps a bit. Also, just tonight I happened to read the August thread, and found that helpful.

    Oddly, it might be of help to me that I went through nearly two years of horrible gastritis/gut issues in my 20s. Won't be my first rodeo feeling like hell for an extended period of time.

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