Newly DX 35-year old

Options
berries
berries Member Posts: 277
edited September 2019 in Just Diagnosed

Hello everyone,

I'm new here to a club that I never wanted to join (no offense), but now that I'm here, I thought I would ask for some help or advice. I know this is more of a mental battle, but I can't seem to catch my breath lately.

I was diagnosed just 3 weeks before my 35th birthday on 8/5 with IDC (with some DCIS), ER+, PR+ and HER2-. Pathology showed it was grade 3, but when I had the biopsy sent to Stanford for a second opinion (my husband worked there), it showed it was only grade 1. The mass is 5cm on ultrasound, but over 8cm on the MRI. My Ki67 is 15-20% which makes me nervous and I am p53 negative.

The ultrasounds and MRI picked up nothing in my lymph nodes and I have been reassured along the way that my case is good and these are favorable (as much as they can be) outcomes. A left mastectomy is scheduled for 9/18 and any treatment will be determined after.

I am trying to stay positive, but the seeds of fear that I've planted in my head are growing uncontrollably.

What if they are wrong, what if its already gone to my brain? Is that even possible? Do I need a bone scan? How come other people are getting PET scans? I pray to God that all I will need is a mastectomy, chemo and hormone therapy -- something I actually was so terrified about coming to terms with, but the alternative is much, much scarier...

Love to you all.

· Share on FacebookShare on Twitter

Comments

  • Moderators
    Moderators Member Posts: 25,912
    edited September 2019

    Hi vmb, and welcome to Breastcancer.org,

    We're so very sorry to hear of your diagnosis at such a young age, but we're really glad you've found us. You're sure to find our Community a wonderful source of information, advice, and support -- we're all here for you!

    We know it's hard to remain positive and not jump to conclusions, but unfortunately, that's the best advice we have for you right now. Worrying will just bring you more concern. So, try to stay busy until you have all the pieces of the puzzle and you can make treatment decisions. Many here will surely be by soon to weigh in with their thoughts and experiences, and offer support.

    Please keep us posted on what you find out, and we are wishing you a speedy surgery recovery!

    --The Mods

    · Share on FacebookShare on Twitter
  • OnTarget
    OnTarget Member Posts: 447
    edited September 2019

    I don't know how they decide about bone vs PET scan, but I asked for a bone scan and got one before surgery.

    All of us have the exact same fears you have about metastatic cancer and waiting for surgery/chemo/whatever is one of the most nerve-wracking things ever. Luckily the odds are in our favor especially with clear lymph nodes!

    Sorry I'm not much help, hopefully someone with more of a clue will help with the bone scan/PET scan question.

    Good luck with everything!

    · Share on FacebookShare on Twitter
  • WC3
    WC3 Member Posts: 1,540
    edited September 2019

    Hi vmb:

    Sorry you had to join us.

    PET scans are only done if lymph node involvement is suspected or the cancer is thought to be stage 3 or 4 for some reason.

    · Share on FacebookShare on Twitter
  • berries
    berries Member Posts: 277
    edited September 2019

    Thank you all so much for your kindness. I'm so sorry you are going through this as well.

    @OnTarget -- did you have clear lymph nodes as well? I have read my MRI report about 10 dozen times looking for new clues and re-read the sentence: The left axilla is within normal limits. The right axilla is within normal limits.

    I met with my Oncologist last week and she also felt my Lymph Nodes and said they felt great, but I still have this fear in the back of my head that I'm sure you are all too familiar with and for that, I am sorry.

    This gives me so much hope, but I'm still terrified of bad news after surgery.

    At this point, I would HAPPLY give up my left breast, go through radiation, chemo therapy, hormone therapy if I knew I'd be cured of this.

    Love to you all.


    · Share on FacebookShare on Twitter
  • mom2bunky
    mom2bunky Member Posts: 189
    edited September 2019

    vmb: I was like you, my lymph nodes looked clear on ultrasound and MRI, and they felt nothing. They said this was very good. The Sentinel node biopsy during the surgery looked clear too, so there was no discussion of additional scanning. Also, my tumor was graded as a 2 after the preliminary biopsy. After surgery, it was downgraded to a Grade 1. It does happen.

    This time of not knowing what's going on is the absolute worst. You'll get through it.

    · Share on FacebookShare on Twitter
  • berries
    berries Member Posts: 277
    edited September 2019

    Thank you so much. I'm really looking forward to the end of this feeling of sheer and utter fear. I wake up startled in the middle of the night only to remember what's happening. Almost as if I'm reliving this over and over each night. It's a nightmare every day.

    I am considered a stage IIB because of side but no lymph node involvement *prayers*

    I'm confused about the two different findings in the pathology reports though -- maybe someone with some experience here could help?

    One report said it was a grade 3 (although, my husband emailed the pathologist because I noticed a mistake in the nottinghame scale - 3+2+1 did not equal a grade 3!!) and he admitted the mistake... Stanford graded it a grade 1. There was also DCIS mixed in there, but they do know what percent is IDC and DCIS.

    When I asked the Stanford oncologist, he said it didn't really matter that the pathology was subjective - but I find the odd? How are we to make treatment decisions based on that?


    Should I have some comfort knowing that lymph nodes thus far have looked clear? I sure do hope.

    Love to you all.



    · Share on FacebookShare on Twitter
  • mom2bunky
    mom2bunky Member Posts: 189
    edited September 2019

    yes definitely take comfort where you can! And apparently clear so far lymph nodes is comforting. It certainly was for me.

    I think the difference is the pathology they do after surgery is of the entire tumor, not just a portion like with the first biopsy. Because of that, my doctor told me the pathology after surgery is the one that "counts." Parts of that is also what they send out for the oncotype, if warranted.

    I am so sorry you're going through these terrible nights and losing sleep. I really hope you get your answers as soon as possible and start taking active steps. You'll feel so much better, I promise.

    · Share on FacebookShare on Twitter
  • Spoonie77
    Spoonie77 Member Posts: 925
    edited September 2019

    VMB - I'm sorry You are here but this is a wonderful place of support and community. Right now You are in the stage of the unknown and waiting that is just the worst. Like you, I am 2B due to size, without node involvement. I was dxd at ahe 41. Thankfully it stayed that way after surgery. Hoping it will be similar for you.

    Definitely agree with Mom2Bunky that pathology can differ from biopsy [smaller sample] compared to the final [complete] sample.

    I wish those of us that are younger would be given additional scans prior to surgery decisions. There is some research showing that those 40 and younger have a [if i remember correctly] 5-10% chance of being dx upstaged prior to surgery if received a PET scan. That was hard for me to swallow but yet no one would order a scan.

    As my Oncologist put it, "It's not that our [being younger] cancer is different vs the same cancer in a person of a older age, per se, Its simply the fact that being younger, we have many more years to live with this beast possibly returning." That is they main difference so some of our decisions needto be weighted with that in mind.

    Anyway I hope something here is helpful. This time you are going through is awful but the stress does seem to decrease after the first steps of the treatment plan. Hang in there. You're not alone. Hugs.

    · Share on FacebookShare on Twitter
  • berries
    berries Member Posts: 277
    edited September 2019

    Thank you all so much for your kindness.

    I'm so scared. How can I have a large mass (8cm according to the MRI, but 5cm according to ultrasound and mammogram) and it NOT go to my lymph nodes? I keep thinking the absolute worst outcome is going to happen. Is there additional lymph node screening I can do? A special armpit ultrasound?

    I am a wreck. I'm sorry.

    · Share on FacebookShare on Twitter
  • Sjacobs146
    Sjacobs146 Member Posts: 770
    edited September 2019

    vmb, When you have your surgery, they will remove some sentinel lymph nodes and check them. If they are clear, you can be reasonably sure that the cancer didn't spread beyond he breast.

    · Share on FacebookShare on Twitter
  • Lexica
    Lexica Member Posts: 259
    edited September 2019

    Don't be sorry, believe me, we've been there and we get it. You are in a particularly scary part of this journey... the waiting and the not knowing is the worst part. You will have answers after your MX in a couple weeks.

    Are they doing a sentinel node biopsy or axillary node dissection?

    I had a CT and bone scan to rule out Mets before starting treatment (I had neoadjuvant chemo). Additional nodes were seen on the CT (originally only 3 were seen during imaging on MRI/US and mammo, many more after CT). I had US and mammo after chemo, before surgery and all my nodes looked normal...turns out 5 were positive, 1 macromet and 4 micro. You just don't know before surgery, unfortunately. Do your best to stay distracted until you can get answers...I wish all this was easier *hugs*

    · Share on FacebookShare on Twitter
  • Falconer
    Falconer Member Posts: 1,192
    edited September 2019

    The waiting and questioning and unknowns are terrible. So don't be sorry for feeling afraid.

    I'll add that my IDC was seen on an ultrasound but not a mammo, and that the DCIS was only found on MRI. My BS said that the mammo has a one in ten chance of detection, the US one in five, and the MRI one in four. Those numbers blew me away. So perhaps that explains the discrepancy in the imaging. You'll have more info in a few weeks after surgery.

    Best to you as you go through the hardest part. ❤️

    · Share on FacebookShare on Twitter
  • berries
    berries Member Posts: 277
    edited September 2019

    Lexica, I am getting a sentinel node biopsy during surgery on 9/18 where the surgeon will check to see if there is anything there, but I am SO frightened that the MRI and Ultrasounds missed something and that I will regret not pushing them for a bone or PET scan?

    Did you have to ask for that scan?


    In which instances are body scans given to patients?

    · Share on FacebookShare on Twitter
  • HopeWins
    HopeWins Member Posts: 181
    edited September 2019

    vmb - apologies if this info was already shared but want to make sure you're aware of the typical testing sequencing. The point of the sentinel node biopsy is to see if there's a chance the cancer has spread via the lymphatic system through your body. Until that's been tested, they probably won't look for bone or liver mets. Too much chance of false positives and unnecessary worry.

    You may have heard of women having full body scans prior to mastectomy but that could be due to a specific type of cancer confirmed via excisional biopsy, an MRI showing enlarged lymph nodes, or some other testing that leads a dr to think they are likely stage IV.

    The sentinel node or nodes are the first in line to filter the "stuff" coming out of your breast. It is very rare for the sentinel nodes to be negative but axillary nodes positive for cancer, and the SNB improves women's chances of avoiding lymphedema that is common with a full dissection. They will biopsy your sentinel nodes during your surgery. If it's positive I believe your BS will do an full axillary dissection during surgery. There are lots of more experienced women on here who can confirm/correct this if I'm wrong. I suppose there might be cases of not doing the full dissection if it's only micromets, but I'm not sure.

    The SNB done during surgery is kind of like a rapid step test in that it's accurate about 85% of the time. The pathology will be confirmed when they do the full breast tissue testing. Mine took about 12 days to come back and it didn't change from surgery. I've heard it can be as soon as a week.

    If your sentinel node/nodes are positive, then you'll likely be a candidate for a full body scan. Were thinking of you and hoping the SNB is negative!!!

    · Share on FacebookShare on Twitter
  • IBJUSTFINE67
    IBJUSTFINE67 Member Posts: 32
    edited September 2019

    Hi honey. I am 52 and am recovering nicely after being diagnosed in June. I had a long wait before my surgery and even though I chose a double mastectomy with reconstruction, I hope it helps to know that that was STILL the hardest part for me....the diagnosis SHOCK, the tests, more surprises, looks on peoples' faces when you tell them. It sounds like you are a lot like me...knowledge helps you. I can't believe how much you know already. I am not even sure what Ki67 and p53neg are!! Every single cancer diagnosis and treatment plan is unique but I will tell you my diagnosis and treatment plan if it helps but, my biggest piece of advice is to get something to help you sleep if you are not sleeping or ask for a little xanax. Your dr.s will be very sympathetic and open to this upon hearing your diagnosis and I am so thankful I did that. If you don't sleep, you will get more depressed and anxious.

    It helped me to ask my "nurse navigator" a ton of questions and it DID NOT help me to talk to most breast cancer survivors beforehand because it just scared me more and some could be quite negative. Similar to if you have ever been pregnant before? Some people just want to scare you.

    So, planning and researching really helped me. Shopping for cute pjs for the hospital helped. Talking to people that are positive helped.

    My diagnosis was stage 1b grade invasive ductal grade 1, hormone pos HER2 negative. I also had a history of extremely dense breasts with 4 years of biopsies so I actually chose a bilateral mastectomy with immediate reconstruction. Nodes were clear. I was so scare too but once I made the decision? I felt better every day. I could have done a lumpectomy with radiation too. But I am glad I followed my gut.

    I am here for you. You will get through this and there will be happiness again and once you make your decision and get treatment, that alone will make you feel better.





    · Share on FacebookShare on Twitter
  • Krose53
    Krose53 Member Posts: 148
    edited September 2019

    I know how scary this can be. I was diagnosed in November 2017. My lymph nodes looked clear during Ultrasound, MRI and during surgery. Unfortunately, when the pathology report came back after my BMX and sentinel node biopsy, I had 2 positive nodes. This is not the end of the world. I ended up having Chemo but radiation wasn't recommended.

    I'm doing great now. Just take it day by day. We can't control any of this but we can make it as easy on ourselves as possible. Stay busy, get out, see friends and hopefully, find someone you can talk openly with. Sending you lots of positive thoughts. We are always here.

    · Share on FacebookShare on Twitter
  • IAmACat
    IAmACat Member Posts: 108
    edited September 2019

    vmb: I, too, was diagnosed at 35. I, too, had sleep issues. Right after my IDC diagnosis following needle biopsy, I was afraid to fall asleep for fear that my tumor would grow when my guard was down. It was as if I had to keep an eye on it and say "Hey! Cut it out! I can see you!" 

    Regarding lymph nodes and tumor size, I believe, and I am no medical professional, that how many cancer cells leak out towards the lymph nodes is related to the aggressiveness of the cells in the tumor, not the size of the tumor itself. 

    · Share on FacebookShare on Twitter

Categories