New to this and lost

Calmspirit
Calmspirit Member Posts: 33 Member
edited November 2023 in Breast Cancer #1

I looked for advice online and was surprised to find I already had an account here. A few years ago I was told while waiting for biopsy results it was 50/50 that I would have uterine cancer. Luckily I did not.


12 days ago I had a routine mammogram, followed by ultrasound, followed by biopsy, followed by a breast cancer diagnosis.

Yesterday they said it is ER+ PR+ and HER2-.

Monday I go for a breast MRI.

Wednesday I meet with a surgeon, a radiation oncologist, a medical oncologist and a breast cancer navigator.

I'm not sure scared is what I'm feeling as much as hopeless or just in denial.

The surgeon is fresh out of school so not seasoned. I have a very hard time with all meds, am both med sensitive and med resistant. The medical place I have been sent I do not trust.

I went to a Korman site and was told the nearest breast cancer place is roughly 6 hours away, I can't make that work.

I was considering passing on treatment but that seems silly yet, I don't want to do this. Starting with the mri Monday. I am trying to just go along with whatever "they" say but it's rough.


I guess I'm just looking for a place to vent.

Life seems rough right now and that's not typical for me...

Any advice is appreciated.

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Comments

  • RocDocVic
    RocDocVic Member Posts: 135 Member

    I would still get second opinion from a different Cancer Center. Perhaps evaluate the proposed treatment options, approaches, and meds they want to use. Ask if there are alternatives. If the 2nd place seems better, see if they can work with current location to switch some things around. If you don't feel comfortable with the surgeon ask to be changed.


    What stage and grade? What type of BC? Invasive ductile carcinoma?

  • Calmspirit
    Calmspirit Member Posts: 33 Member

    Grade 2. No stage given yet. yes invasive ductal carcinoma.

    Is a second opinion a typical thing that most people do?

    Likely I cannot get a 2nd opinion ...

  • RocDocVic
    RocDocVic Member Posts: 135 Member

    I got one because my original cancer team and I didn't click especially after I caught them lying to me. It should be covered by insurance too. You should be able to have all your records sent for review but they'd probably want to meet with you in person. Tell them you have concerns about their proposed treatment plans and to see if there are options. I've seen forms on line for MD Anderson, Mayo Clinic and others for 2nd opinions. If they have good alternatives then perhaps they can call your team and discuss.


    Have you brought up your concerns to your team?

  • RocDocVic
    RocDocVic Member Posts: 135 Member

    Did they do MRI, extensive Ultrasounds, Cat scan? Mine was stage 2 based on biopsy and Ultrasound and MRI.

  • RocDocVic
    RocDocVic Member Posts: 135 Member

    FWIW, I've got invasive ductile carcinoma too. ER/PR- and HER2 3+ I'm having 2 cytotoxic chemo drugs plus 2 targeted drugs to go after the HER2 protein for 18 weeks every 3 weeks. Then surgery and radiation if lumpectomy. Followed by additional targeted treatment. Not fun, but it should work based on what they know.

  • Calmspirit
    Calmspirit Member Posts: 33 Member

    I guess I wasn't clear. I haven't met any of the team yet. I was just diagnosed.

    All I have had is mammo, ultrasound and biopsy. MRI is scheduled for Monday and meeting the team on Wednesday. After much thought, I cannot travel for a second opinion and there are no other medical facilities within many miles.


    There is no proposed treatment plan. I'm assuming they will tell me that Wednesday. ( The radiologist who did the biopsies and next day called me with results did say he thought I would likely need chemo, surgery, radiation followed by years of some other treatment.

    In my very large family no one has ever had breast cancer so I am trying to sort it out...

  • MaryStrick
    MaryStrick Member Posts: 2 *

    If you feel need for another opinion and can do it ( cost, time, location and insurance a hassle) get it! You have to have the peace about your drs! I’m in middle of radiation after lumpectomy. My Insurance not allow second opinion unless pay for it myself and I work for a hospital. Hoping all gets better.

  • RocDocVic
    RocDocVic Member Posts: 135 Member

    I was lucky. Medicare and my additional insurance coverage allows for 2nd opinion. So glad I did. Although same proposed plan it's a 180 degree difference. I have confidence and trust in my team and the nurses in the infusion center are loving and top notch. Every shows me they care and are concerned about me. Heck, the day after 1st chemo I had bad intestional cramping and some diarreah. They guided me through it and had me come in for blood tests. I just had a bag of IV fluids to get me feeling better. I'm very blessed to be where I'm at.

  • LovesPrimes
    LovesPrimes Member Posts: 109 Member

    Calmspirit,

    First and foremost, I'm so sorry for what you are experiencing right now. It sucks. Cancer sucks. And the period between prognosis and diagnosis is one of the toughest to get through. (See poem below; I did NOT write it - someone else on these boards did but it helped me realize there really are others who understand exactly what this experience is like, even if we're each different.)

    I had a breast MRI March 8th of this year that was supposedly going to make me feel better about something the radiologist deemed "benign appearing" on my mammogram the year before. Turned out that that breast was fine but the other one had a mass. I was scheduled for MRI-guided biopsy March 21st and diagnosed with invasive ductal carcinoma and DCIS the next day. It was small enough that I did not need chemo but I had bilateral mastectomy and tissue expanders exactly 50 days later and started the anti-cancer meds June 13th. (I'm ER/PR+ and HER2-.) If I can deal with the side effects reasonably, I will be on the meds for 5-10 years.

    I know the waiting is so hard. Please reach out on these boards or by direct message as much as you need to. And please keep us updated.

    --------------------------------------------------------------------------------------------------------

    After the diagnosis; before the prognosis

    You haven't slept for three nights. The thoughts keep you awake. All you know is there is cancer inside your body. You hope it's just contained in your breast. You don't have a prognosis. You don't know the stage. All you know is that it's called Invasive Ductal Carcinoma.

    You sit in the dark and cry at night long after everyone else has gone to bed for the first few nights. Then, around day three, you decide you have to continue on. You have to live your life between appointments, face the battle, and take care of your people. So you make yourself cook dinner. Shop for groceries. Plan birthday parties. Go to work. You fight the thoughts every single minute of every day. You fight to be productive.

    You find joy in lots of things. You manage to smile. Real smiles. Even laughs. But sometimes you need to stop and cry.

    You've gotten more news, and it's hopeful. They assure you it's early. It's not aggressive. But there's still a lot of unknowns and you have weeks more waiting to do. WEEKS.

    You're undressing and your young daughter notices your biopsy marks and bruises. You poorly explain to her that it's sick, but you're seeing a doctor. You say it gently without worry, so she won't worry. You stuff your bruised breast into a bra and wonder how she'll react later when the scars are bigger, or if the breast or nipples are gone. 

    You notice people treat you differently. People that didn't talk to you before are friendly now. Your family has anxiety, and to manage it you try to hide yours. You know it's not healthy. You do it anyway. You sometimes feel misunderstood. Maybe you shouldn't have told anyone. Too late.

    You see another doctor. His nurse is sweet. She cries in the room with you and hugs you. He tells you you're going to beat this, but you have to fight.

    You start to learn things you didn't want to know. About receptors and proteins and chemo and radiation and never in a million years did you ever think you'd see a plastic surgeon but now you have one. And you have ten appointments scheduled in the next three weeks. It's going to be a long haul.

    And you feel guilty. For having cancer. And you know you don't need to feel that way, but you do anyway. You don't want to let your people down. The resources you were given say it's normal. The doctor says you'll need something for depression. Instead, you just eat tacos….

    You talk to survivors. They're so helpful. They hold your hand and let you cry and tell you nipple jokes and show you their scars. They assure you, you got this.

    They tell you what the radiation is really like. How they literally thought their nipple would fall off. And how they endured it every single weekday for six weeks straight; you had no idea it was that intense. They tell you how it hurt and how to soothe the pain and how their armpits turned black. And sometimes they tell you they endured it all and it still came back. 

    And they tell you about chemo. How they went three days a week for six months and had surgery for a portacath that they still carry inside their body. They tell you how much weight they lost and how many times a day they puked and show you pictures of how they looked without hair. Or eyebrows. And they tell you they love you, and it's hard.

    And you wonder if you'll need to do it, too. If you'll have to endure radiation or chemo. And what will happen to your job. And insurance. And how will you pay the bills that are already rolling in from the first two appointments if you don’t have strength to work while you're fighting for your life.

    You wonder what your kids will think if you lose your hair. If you're weak. If you're sick all the time. You don't want them to see you suffer. You pray they don't have to.

    By now you've heard about hormones and blockers and chemotherapy drugs you can't pronounce; they say you'll need to take them maybe for the rest of your life. The side effects are scary. You wonder how much it'll cost. 

    You hear about medical menopause caused by chemo. You wonder if they will take your ovaries, too. You wonder how many surgeries you'll have. 

    The survivors talk about how it affected their marriage. Yours is strong but you know that your femininity and womanhood are going to change, and you pray the two of you can embrace it together. He assures you, "in sickness and in health.”

    And you weigh your options. Pros and cons. Lumpectomy or mastectomy. You make up your mind, then change it.

    And you wait.

    And wait.

    And wait.

    And while you wait, you discover your friends all over again. You see them praying. Cards that make you smile. Spontaneous scripture by text. Gifts and packages of love. Books and devotionals to read. Pictures to hang on your fridge and fuzzy things and candy and blankets and things that smell good. Friends showing up to get your kids home from school. People near and far offering help, love and support. You feel more love than you have ever known. And you're filled with gratitude for your tribe. You can't repay them, not yet. But you'll try someday.

    And you hold onto the promise in Romans 8:28

    "And we know that all things work together for good to them that love God, to them who are the called according to His purpose."

  • Calmspirit
    Calmspirit Member Posts: 33 Member

    Oh my goodness, that poem resonates with me.

    My thoughts do keep me awake and the only time I cry is around 4am, when I'm not awake enough to be strong.. Unfortunately day 3 has come and gone, today is day 10 since I received the phone call.


    I'm running high stress. My life is a mess. 


    The highlights are: My husband of 40+ years has a brain disease. One of the side effects of it is he has no longer has empathy. When I told him I had received a call about the tests I'd had done he simply said I don't want to hear about it. (similar to when my mom passed and I shed a few tears and he asked how long it would take as he wanted to go to sleep) pre illness he was the most caring man, now his brain is rendered incapable of caring. He can no longer be left alone and I'm not sure how I will manage him and breast cancer. I do have a carer set to start next week. 


    In addition to that my little sister, whom I love dearly, came to visit me in August. The 24th of August she found a lump in her arm pit. I took her to UC. 2 days later, after biopsies etc we were told she had breast cancer. She flew back home, got into a cancer place, did 1 round of chemo Sept 7th (that 1 time took her hair and left her in Hospital with sepsis)


    Her surgeon decided she didn't think the diagnosis was correct. All treatment was stopped while we waited over a month for pathology. It came back stage IV melanoma. The original pathologist changed his opinion to concur. She just started immunotherapy. They had seen spots in her liver but had an MRI yesterday and its clear. Unfortunately brain MRI shows a variety of thing and we are again waiting for more tests to see just what those things are. Today she had a full abdomen CT. Has a spinal tap and blood work scheduled stat but because of blood clots caused by the chemo she is on a variety of blood thinners and has to be off those 5 days before lumbar puncture can be done. I fear for her.


    She is the reason I went ahead and scheduled my mammogram. It was due last year but I skipped it. When they said it showed a mass I assumed it would be nothing. Actually told my PCP I would do the ultrasound but was confident no biopsy would be necessary.


    When the radiologist said he wanted to biopsy I asked about a lets wait and see approach. He strongly advised against it so I said ok lets do it. He said it was very small and as he stabbed the front of it it mostly disintegrated so he was thinking most likely a cyst but he couldn't be sure if the back of it was solid but he thought I had nothing to worry about.. He called me the next day and was more upset than I was.. I was totally in denial.


    I have a large family, none of whom live near me, with 5 sisters, many, many aunts, cousins etc. None have ever had breast cancer or any cancer. I'm not sure of the odds if my sister and I going through this at the same time but for me its unbelievable.


    I will write later about my feelings about the medical places here.

    Thanks for listening

    C.S.

  • Calmspirit
    Calmspirit Member Posts: 33 Member

    So far today has been horrible. Today was the day for the breast MRI.

    I started the day with my almost 1 year old car not starting. Same as last week, the battery was dead. Got a jump, which left me running late for the MRI appointment..

    (Got the car unto the subaru dealer, turns out the cargo light was on.. $83 later it should be fine now.. thankful I no longer have to worry about car not starting )

    Arrived at MRI place. Rather rude girl. Couldn't get IV started. Asked if I was claustrophobic I said yes, to a degree but I was going to try this as I was told it's easier face down and I wouldn't need to be all the way in the tube.. she said oh, yes I would. And I could just cancel the appointment...

    I told her I'm pretty confident she is the same person I spoke with on the phone.. she asked if I wanted someone different..I said let's just get this over with..

    She left and sent a very nice guy in who hooked up the IV.

    Another woman came and pulled back the curtain and said let's go..I followed her to the room with a scanner. She said to lie down with my boobs in the holes.. fine.. face in pads..fine..

    I pointed out the strings to my gown were in the holes with my boob.. she pulled those out..

    Someone else was in the room, judging from the smell I think it was the 1st girl..

    She said she was putting a rubber ball or something in my hand..

    I opened my eyes and looked down and said I thought there was a mirror or something.. nope, this is it..

    I had to have headphones, I said no thanks. She said no choice, it was those are ear plugs..she slapped a set of headphones on my head.. fine.. what kind of music did I like?.. I don't do music..do you have like a directed meditation or something? She said she would play spa music.. fine.

    She wrapped my arms down against my sides with some type of cloth..

    In I went.. I counted .1,2,3.. made it to 50, breath in... breath out..thought of other things..your just lying here, same as laying any place.. I was sweating...sweat was starting to trickle on my face..I couldn't wipe it.. I said hello, are you there? No answer...

    I counted again.. again this time said, Can you hear me? (I wanted to know how long it had been and how long was left).. no answer...

    I squeezed the ball and she said what? I said I want out.. she let me out...

    I later ran into the man who had done the iv.. he was nice, said he was sorry it didn't work out...did i wantto speakwiththe nurse aboutit?( I had asked while he was doing the iv how long the girl had been there he said maybe a year) I think he knows things about her.


    So that's not happening.. wonder how that will effect treatment.....

    Drove hour and a half home...it's a downer day...

  • LovesPrimes
    LovesPrimes Member Posts: 109 Member

    I'm so sorry, Calmspirit. The people who took care of me for my MRI guided biopsy were wonderful and very caring and it was still a traumatic experience. I can't even imagine if the techs had been thoughtless or unhelpful. I hope today is better for you and you can get that biopsy rescheduled with better care ASAP!

  • Calmspirit
    Calmspirit Member Posts: 33 Member

    Thanks. I'm not sure about the reschedule. I called a hospital a ways out and asked about having a breast mri there and she checked, said the only place was where I had previously been. I asked her if she meant its the only place in the entire state? There is a place 6 hours out.. that's 12 hours round trip so I don't know, I would like to know if there are multiple spots in my breast or just one etc.

    I meet with surgeon, oncologists and navigator day after tomorrow and they are supposed to have a plan.. it will be interesting to see what they say about no MRI.

    Im glad you had wonderful and caring people . The people I had for the biopsy were the best.. as was the guy who put the iv in my arm for mri.. they are all part of the same business.

  • Calmspirit
    Calmspirit Member Posts: 33 Member

    Had appointments with "the team" . I have surgery scheduled in 8 days. Lots of caution to take it easy after and not to use my arm.

    Then will have approximately 2.5 weeks to heal, then 15 days of radiation.

    Surgeon noted I didn't complete MRI and said we didn't need it anyway so that's all good.

  • LovesPrimes
    LovesPrimes Member Posts: 109 Member

    Calmspirit, I'm so glad to hear that not getting that MRI will not impede your treatment! How are you feeling about your treatment plan?

  • Calmspirit
    Calmspirit Member Posts: 33 Member

    Thanks for asking. I'm not sure. I am a bit apprehensive about the surgery and after. Surgeon said the lumpectomy will be fine but the node removal will take a while to heal.

    I ordered front opening sports bras and will pick up a few button front shirts tomorrow. Ordered a wedge pillow today as she said I should sleep on my back after (I'm a side sleeper so this will be a tough thing).

    Surgery place is insisting I need someone with me after but I told her I have Noone so she could let me stay in hospital or send me home.. she didn't like that option. Apparently since covid all mastectomy, lumpectomies etc are now out patient.

    Then there's the entire will she find something else and I will wake to having had a mastectomy instead of lumpectomy..I told her it was fine ..

    But the unknown sucks.. I have had 4 surgeries in past but this one I am paranoid about surviving...

    The radiation and hormones I guess I will worry about later.. for now just want to get through the surgery and figure out how I can sleep to heal..

    How are you? I'm curious how you came to have a double mastectomy if you don't mind to share . How are you doing now? If you have expanders I assume at some point you will have implants? Is that soon? If I ask too much feel free to tell.

    Best to you,

    CS

  • RocDocVic
    RocDocVic Member Posts: 135 Member

    Almost all hospitals will not release a patient to go home, especially if they use general anesthesia, the same day, at least a good hospital wouldn't. Even when they use monitored anesthesia for procedures that are under 1 hour if they have no friend/family to pick them up and take them home (which happened to me for the port placement and another arm surgery - I begged a friend to pick me up and finally she agreed) they keep you overnight. No Uber allowed until the next day. They should keep you overnight to monitor your recovery regardless of previous Covid policy. The hospital should have enough non-Covid bed space now compared to the times when the hospitals were filled with Covid patients.

  • LovesPrimes
    LovesPrimes Member Posts: 109 Member

    Hey, @Calmspirit . Thank you for sharing your feelings about your treatment plan. As to your mastectomy question, it was a really difficult decision. I grew up literally watching my aunts die one by one from breast cancer. Then in adulthood, I lost my sister to ovarian cancer and 18 months later, my mom to breast cancer. I chose to do the genetic testing, which is itself a difficult decision because you have to know what you will do with the results, and found did NOT have the BRCA gene mutation. If I had tested positive for the gene mutation, my husband and I had already decided I would have everything "gutted". But I didn't. At that time, I also found out that as much as we have learned about the role genes play, there is still more that we don't know yet.

    Fast forward now many years to my diagnosis in March of this year. I don't have the gene mutation but I have breast cancer anyways. Because of the increased protocol with my greater risk, we caught my cancer early and I was given the choice between lumpectomy and 6 weeks radiation or mastectomy and maybe radiation, maybe not. And either way 5-10 years of hormone therapy. I completely respect that others would make a different choice, but I wanted to avoid radiation if at all possible and as stressful as my mammograms, breast ultrasounds, etc. have been all these years, after already getting breast cancer, I knew I couldn't handle all of that going forward. And I still suspect that there is a genetic issue in my family in addition to the BRCA gene mutation that has shown up in some members but not all. In the months since, I also chose to have an oophorectomy.

    I'm curious, per @RocDocVic 's comments, if it varies regionally, but my mastectomy was outpatient and that's the norm here (Central Florida). They also put in tissue expanders so my surgery was a long one and, after the fact, we think it was really risky to have sent me home the same day. My reconstruction surgery is just before Christmas and because of the more complicated surgery (DIEP), I will be in the hospital for 3-5 days after. They say it's harder to recover from than the mastectomy, which is so very hard to imagine since that felt like being hit by a truck, emotionally and physically.

    I have appreciated and been helped by so many on these boards; please feel free to ask anything. All the choices suck. Cancer sucks. But I hope you can have as much peace as possible about your choices going forward.

  • RocDocVic
    RocDocVic Member Posts: 135 Member

    In my humble opinion that's insane performing a mastectomy as an outpatient surgery. Especially considering you'd be under general anesthesia. I'd insist that I be in at least 1 night. General is a lot harder to come out of than monitored anesthesia where they give you light sedation that lasts for 35 minutes up to maybe 50 minutes or so.

  • LovesPrimes
    LovesPrimes Member Posts: 109 Member

    @RocDocVic I absolutely agree and IMHO, the surgeons would prefer us to be hospitalized too. Especially patients like me - I was under for several hours. I think the problem is *insurance* not paying for it. I HATE INSURANCE! I HATE INSURANCE! I HATE INSURANCE! (Okay, I'll try to settle down now...)

    Another side note - initially insurance wasn't going to pay for my breast MRI. Which found my cancer. My cancer that was small enough and located so that it would not have been found on mammogram. My GYN had to do a peer-to-peer review to fight for me after my initial MRI was canceled because insurance wouldn't pay. I HATE INSURANCE!