Afraid and scared just recently picked up my pathology report

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Toolmom
Toolmom Member Posts: 11
edited December 2021 in Just Diagnosed

Well where to start. I am 53 had a biopsy on October 7, 2021 picked up my pathology report myself on October 15. My doctor has never called to advise me I have breast cancer and has not returned my calls. I am shocked, angry and so many other feelings I cannot put into words. Prior to my biopsy and ultrasound I obtained life insurance. I had my biopsy and the next day I called a friend who had previously worked in administration with Loma Linda Cancer center and asked her for help. Long story short, I changed by insurance for better coverage effective Nov 1, and got an appointment with a Cancer surgeon at Loma Linda all prior to getting my biopsy results.

On Oct 15, 2021 I went to pick up my pathology report. I opened the envelope in the hallway with a girlfriend and my stomach dropped. I had breast cancer. What to say or do.....I was terrified!! Would I be around to see my kids get married, grandchildren? We are planning retirement in the next 5.5 years.... finally we were gettimg to retiring from our family business and get to spend more time together, would I be alive?. I feel like I am rambling.

I have done some research on my own but most sites terrify me. I had neglected my mammograms for years. However after being hospitalized with Covid and double pnemonia in Jan 2021 I got my mammogram, blood work etc all came back fine. they even took a second mammo on my right breast to verify calcification. I found my lump on a self examine in Sept. on my right breast. Saw my doctor, got an ultrasound, then the biopsy.

I have infiltrating ductal carcinoma, Luminal B, Moderately differentiated (6 points) My tumor size is 11mm, estrogen receptor positive, progesterone receptor positive, Ki-67 40%, HER2 by IHC = 1+, negative. In situ component = ductal carcinoma in situ. lymphovascular invasion - not identified, microcalcifications not identified.

My 2 kids are out of college and for now they live at home, lol lol my oldest is going back to school for a change of vocation, and I have not told them! I guess I am trying to shield them until I have some real information to give them along with a treatment plan. When I was hospitalized for 6.5 days with Covid my family fell apart. They were a wreck they were just functioning. Now I have cancer. I have done some light researching but find my anxiety growing and at times I feel confident things will be fine. I am in a rush to see a surgeon but feels like I am stuck waiting and waiting.

I see my surgeon on Nov 9 and my oncologist on Nov 10. Not sure I understand the ki-67 fully. I guess I just wanted to talk to people who have been there. I have great friends and my husband is wonderful but I am afraid. Should I get my regular flu vaccine now and shingles and Pneumonia vaccine now? Should I be doing anything else? I am organized and a detailed planner by nature. I am already making plans :I will put aside some meals in the freezer shortly, I am getting our business paperwork in order to make life easier and finishing up my personal home projects.

I feel as if I have been blind sided and trying to keep my emotions in check. I am trying to stay calm and feel positive that I caught my breast cancer quickly. Should I be doing anything else?

Thanks


Comments

  • LoverofJesus
    LoverofJesus Member Posts: 255
    edited October 2021

    I am so so sorry you find yourself here! But you have come to the right place for information and and a lot of people that will care about you.

    I’m not a dr but I can say from what you wrote (estrogen and progesterone positive and Her2 negative) those are all good things if you can have good things in cancer.

    I assure you breast cancer treatments have come a long long way and it’s not as bad as it sounds.

    I too was so upset when I found out. And some days are still tough. But know that there are many many women that join you and go on to live long lives. Take a deep breath. Try not to Google. Trust me it is NOT your friend right now!

    I’m praying for you and I know you’re scared. I was too. Lean Into your friends and family and if your religious God! Let yourself feel all the feels. Have your pity party, just don’t stay there. There is every reason to believe that you will live to see everything you want to see and more!

    Love and Hugs coming your way! If you want to chat please feel free to message me on here. I have learned a lot in 5 short months!

    LoverofJesus

  • jhl
    jhl Member Posts: 333
    edited October 2021

    Hi Toolmom,

    I am so sorry you find yourself here. First, I would recommend taking a deep breath. You spoke about your doctor not not calling or returning your calls. What kind of doctor is this? Is this your PCP or the individual who did the breast biopsy. Did you have your biopsy done at Loma Linda? At this point, I think you will need to wait to speak with your surgeon & MO. Waiting is really awful, I know.

    In the meantime, yes, you should indeed get your flu & pneumonia vaccine. Have you also received a Covid vaccine? You should get one if you haven't already even though you have had Covid. The very best Covid immunity is a combination of naturally acquired through disease as well as one dose of vaccine. You will need at least 8 weeks between Covid & Shingles vaccines. The shingles vaccine is 2 doses so I think it is best to wait until your testing & treatment is over.

    I think the next two weeks will be more informative after you see the surgeon & MO.

    Stay well,

    Jane

  • Toolmom
    Toolmom Member Posts: 11
    edited October 2021

    Thank you I appreciate it. you are very correct Google is not friendly lol lol. I have only selectively looked up things online but for the most part have stopped. I am trying to stay positive but some days are very hard. Thank you.

  • Marinergal
    Marinergal Member Posts: 9
    edited October 2021

    Hi Toolmom,

    I'm so happy you reached out. Although I haven't used the forum a lot it has been very comforting for me when I have. I agree that "breathing" is an excellent idea. It sounds like you're in a waiting phase right now which is not fun. I know I felt better once there was a plan in place. I'm sure you will too. Please keep us updated and reach out when you need to.

  • Toolmom
    Toolmom Member Posts: 11
    edited October 2021

    JHL My Primacy care doctor has not called my. The biopsy facility did NOT want to release the report to me they told me to talk to my Primary care doctor! As you can see I won and have my pathology report. I am thankful that I got the report and I am not waiting to hear from my PCP. I have had both Covid Vaccine in march and april. I am thinking of getting the 3rd covid booster our business keep my husband in contact with TONS of people, I a behind the scenes.... but get exposure through my husband. we are an essential business so he is considered high risk exposure. We will both get the 3rd shot.

    Thanks I will move forward with vaccines. the waiting is hard.

    thank you!

  • Toolmom
    Toolmom Member Posts: 11
    edited October 2021

    Marginergal

    Thank you. I agree with you I am much better with a plan of action vs waiting. I will continue to take deep breaths and hold on

    Thank you

  • Jelson
    Jelson Member Posts: 1,535
    edited October 2021

    Stop with blaming yourself for neglecting your mammos, looks like you saved yourself some radiation exposure, recently got mammo with an all clear and THEN found a lump YOURSELF and followed up quickly. Good Job! Your original doctor has a major problem, you were wise to switch.

    I didn't tell my adult children about my diagnosis until I had a plan in place. Unfortunately we all weren't together until Mother's Day which still causes a bit of outrage - so avoid what would otherwise be happy holidays. Bring all your records: mammos/ultrasounds/path reports to your new surgeon, write out your questions and bring someone with you. Sorry you are waiting so long but you are wise to keep busy.

  • jhl
    jhl Member Posts: 333
    edited October 2021

    Toolmom,

    As you move forward, I want you to be aware of a law that took place in April of this year. It is the 21st Century Cures Act that requires health providers and health systems to provide you access to your medical records at the time they are resulted. You can report this facility for blocking your access. As you become a patient with Loma Linda, you will be able to access your history & physical, any discharge notes, imaging narratives, laboratory & pathology results, consultation, procedure & progress notes. I really encourage you to become familiar with your patient portal so you can find results of any tests or notes you've had. It is hard to remember everything & you might want to use this information to make notes for discussions you will have with your physicians. I'm proud you were able to get these results but never ever put up with blocking again.

    The waiting is very hard but this website has a lot of information. I'd encourage you to start by looking at the section on IDC breast cancer. You can read about some others experiences which I found very similar to my own experience. Treatment in the US follows what is called NCCN Guidelines (National Comprehensive Cancer Network) & you can find it here: https://www.nccn.org/patients/guidelines/content/P.... I believe Loma Linda is a NCCN Center so you will be in good hands.

    Until your appointment, breathe & live in the moment!

    Jane

  • Toolmom
    Toolmom Member Posts: 11
    edited October 2021

    Jelson,

    Staying busy is what I have been doing, I am finishing up the refinishing of my kitchen table. Currently tile is being laid in the last 3 rooms of the house lol lol. Telling the kids will be hard looks like it will before Thanksgiving. Trust me I feel so very very grateful that I did get a mammogram this year and feel beyond blessed that I did and that I found my lump. I am putting together a binder as we speak with my current CD images of my mammograms and ultrasound and the few reports I have. I will be taking my husband with me along with a pen and paper. I feel like I have 1000's of questions so I am trying to get my questions in order of importance.

    thank you

  • Toolmom
    Toolmom Member Posts: 11
    edited October 2021

    Jane,

    Thanks for all the info. I am just setting up my portal and I figure I need to get very familiar with it. I will also be printing out my reports to keep a paper copy of them..... lol lol old paper habits are hard to break. I will look at that 21st century cares act and reading about the NCCN guideliness. Lots to learn

    Thank you so very much.

  • ctmbsikia
    ctmbsikia Member Posts: 1,095
    edited October 2021

    Toolmom, I'm sorry of the way you found out your own diagnosis! It actually angers me if you are in the US, which I am assuming you are. There's not much of a benefit of the doubt but if I were to give one to you perhaps your primary is busy setting up a team for you. A surgeon, an oncologist, a nurse navigator should be assigned to you as well. Did they really expect you to take all this information in at once? Take it a day at a time, The wonderful folks here will help guide you through as best we can. This part is the hardest. You don't need to learn everything in a day. Be kind to yourself. Breathe! I'd give that doc a piece of mind though for not at least calling!

  • Toolmom
    Toolmom Member Posts: 11
    edited October 2021

    ctmbsikia,

    Thanks goodness for wonderful friends who guided me to Loma Linda Cancer center and helped me get an appt with one of their top breast surgeons as soon as she had an opening. I have a nurse navigator who is great who helped me find an oncologist. I am just glad I did not sit an wait. one of my friends said s.he would have taken the silence to mean "no news is good news" I am glad my personality does not subscribe to that. I dam trying to take it one day at a time and BREATHE but it is so hard at times.

    thank you

  • ThreeTree
    ThreeTree Member Posts: 709
    edited October 2021

    Toolmom - Just want to underscore what jhl said about the new law. They have to release your results now as soon as the tests are completed. They get posted to a portal if your facility uses one. Some prefer to wait for the call and hear the details from their doctor, but many (like myself) prefer to have access as soon as the info is available. I think some doctors used to take as long as a week to get in touch with people to go over their results. That just adds to the waiting anxiety if you ask me.

    Sorry you've had to wind up here, and wish you the best of luck!

  • oldladyblue
    oldladyblue Member Posts: 272
    edited October 2021

    I am sorry Toolmom that you had to find out for yourself, but good for you for being proactive. Your cancer sounds similar to mine, and I was told early on by my doctor that if I had to have cancer, that this was a good kind to have (very treatable, not life threatening). I did get my flu shot and 3rd Covid booster as soon as I could after diagnosis. Waiting is so hard, try to keep your head clear of worry until you know more. After surgery your path forward will be laid out in full and you will feel better knowing that path. My only suggestion right now is to make sure that your doctor orders an Oncotype test for you. That score will help you decide if you need chemo or not.

  • Toolmom
    Toolmom Member Posts: 11
    edited October 2021

    Oldladyblue,

    I agree with you the waiting is hard. Thank you so much for the info on Oncotype testing. I am adding it to my list of questions to ask my doctor. I am working on keeping myself busy and working hard to not worry. Thank you so much

  • Toolmom
    Toolmom Member Posts: 11
    edited October 2021

    JHL and Threetree,

    Thanks for the info on the new law. I set up online accounts with MYCHART and online accounts with the local lab and mammo facility so I will NEVER again be at the mercy of waiting on other people again! It truly makes the waiting so much harder! Thank you for your support!

  • beach2beach
    beach2beach Member Posts: 996
    edited October 2021

    So sorry you had to find out that way but glad you took control and got your results. I think I would have blown into my PCP office and laid into him/her. No way he/she did not know results unless they completely ignored patients charts etc.

    In regards to kids, I was 51 when diagnosed 4 years ago with 2 in college and 1 was still in high school. Whether some think I was right or wrong, I waited until I had all my facts, knew what I was going to do, then I told them as gentle as I could but the truth. I had breast cancer and I was going to do all I could for it, and I certainly had every plan to be around for a loooong time. I also told them life goes on for them, and I wanted them to go back up to college (it was the summer) do well and enjoy.

    Just like you did with getting your reports yourself, do what you feel is right for you and your family. :)

  • Toolmom
    Toolmom Member Posts: 11
    edited October 2021

    Beach2beach

    To be honest I am sooooooo angry with my primary doctor that I am not sure what I would do if I went in there!!!! I I feel the same way with my kids. I want to wait until I have all the facts. My youngest one is looking to move out right now and I do Not want him to stay home because of me. I want him to move closer to work instead of being caught in horrid traffic for 1.5 to 2 hours each day. I want them both to keep on living their lives. The waiting is the hardest I do best with a game plan.

    Thank you

  • voraciousreader
    voraciousreader Member Posts: 7,496
    edited October 2021

    toolmom….if you read my signature, you will notice that my tumor, while larger, has similar characteristics to your tumor. I was also diagnosed at 53. This week, I received my Medicare card and it kicks in in January as I turn 65. That same month, I should be celebrating 12 years of NED….


    With regard to your children’s reaction to your Covid hospitalization and now THIS, I promise you, they will be okay and….so will you. Throughout my adult life, I have had some real major health zingers. My children have learned first hand how to be resilient….and more loving and kind.

    Cancer never takes a holiday and sadly, often comes along while you are living life and making plans. There is NEVER a good time to be the bearer of sad and scary news.


    My suggestion….wait until you have a protocol in place and then calmly gather your family and explain to them your situation. Practice what you will say to them in front of a mirror. Most importantly….tell them firmly and often that you are making plans and they should continue to do the same. And finally, tell them and remind yourself that for many of us, breast cancer is a very treatable disease.


    i wish you well.

  • Toolmom
    Toolmom Member Posts: 11
    edited October 2021

    voraciousreader

    Thank you for you reassurances. I am glad that you are cancer free!!! it feels good to see positive outcomes! I agree I am waiting until a plan is in place, and I am sure my family will rise to the occasion. Seems like I am worrying about everything lol lol but I am concentrating on the now! Thank you so much.

  • Jarnwine1
    Jarnwine1 Member Posts: 3
    edited November 2021

    I’m right there with you. I am 38 and received my pathology report yesterday. I have grade 3 invasive ductal carcinoma, triple negative. I had a unique situation. My sister is the office manager of my doctor and she actually received my results over the phone. So, since she knew I was at work, she told my parents, husband and other sister. They met me at home to tell me together. I feel so supported and loved. It’s crazy to think of the unknown right now. Hoping and praying for the best but trying to also prepare for the worse.
    My family joked and said cancer picked the wrong family member because I’m the strong and stubborn one. I am a fighter and will do what I have to do to make it through this. You will too. The hardest part was telling my teenage kids. I am waiting until Monday so I can schedule an appointment with my oncologist to come up with a plan

  • msphil
    msphil Member Posts: 1,536
    edited December 2021

    hello sweetheart we ve been there hearing those words some of my story we were planning our 2nd marriages I prayed for this man and found my lump in shower. Already working in medical field first O R then cut workers clinic had own office in Peds. So called fiance then went to work had needle biopsy scheduled saw faces if colleagues and knew. Had my cry then decided to fight with my faith and with Hope Positivity. Praise God got thru it was only 42 then that was young back in 90 s. So far Inspiration in am a 27 yr Survivor and 27 yrs Anniversary. Come back here we are here for you. msphil idc stage2 0/3nodes 3mo chemo before and after Lmast got married then 7 wks radiation and 5yrs on Tamoxifen. Hold on.

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