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Second Opinions & Genetic Testing

hartnsole
hartnsole Member Posts: 24
edited May 2022 in Just Diagnosed

Hi all,

This is my second post, but I'll give a brief summary of my diagnosis.

Diagnosed 1/24/22. I've received a biopsy and PET scan. I have a 4 cm lump in my left breast and a lump (I believe 2 cm but can't remember) under my arm in my lymph node. The PET scan has revealed that there is no distant cancer that they can see and biopsy revealed that I'm ER+ and PR\HER2 negative. I was told I was stage 2b for now but maybe 3 if more lymph nodes are found.

I met with a medial oncologist and my surgeon this week. The recommended treatment plan is chemo first to shrink the lumps and hopefully make the surgery easier. That will be followed by surgery (lumpectomy), radiation and then hormone therapy. She stated she'd send my labs for an oncotype test if there is enough tissue remaining, but if I start the treatment next week, what's the point? If my oncotype test states the side effects of chemo outweight the benefits, I would have already begun treatment.

Question: I am not looking for a second opinion because I doubt I have cancer. Moreso about the treatment plan. I was hoping not to have chemo and I'm not sure if having chemo before surgery is the standard in my scenario. I understand the recommendation to shrink the tumor since it may make my healing time easier for the surgery, but it's my understanding that chemo doesn't always shrink the tumor. If it doesn't then it feels like I've harmed my body more than I needed to. If there are other options to shrink the tumor, I'd like to know what those are. I was told that even if I don't have the chemo before the surgery, I'd be recommended to get it afterwards to get any cancers that may be too small to be detected or may be hidden somewhere in my body.


Question #2: How did you determine where to get a second opinion? There is a major hospital here (Emory) that seems to be the go to in my state (It's not the hospital I'm receiving treatment from currently) but I was wondering if it's better to try to get a second opinion from one of the top hospitals from the US News Best Cancer Hospitals list like MD Anderson, Mayo Clinic and Sloan. I'll probably be paying for the second opinion out of pocket. Just not sure of the turn around time or if I'm putting myself at risk if I wait for this opinion.


I just got a call during a meeting a few minutes ago and they've setup my first chemo session for next week. I'll have to try to get an appt to have a muga scan for my heart prior to that appointment and I'll also have to get a port put in before that time. It just all feels so rushed considering I was just told my stage and met with the surgeon and med oncologist this week. I think hearing from a second opinion would make me feel better about the plan if it seems their recommendation is pretty standard. I'm the most nervous about taking chemo out of everything since I've read so many horror stories about it causing other issues and cancers.


This turned into a longer post than I anticipated. Thank you to anyone who is able to read it all and chime in.


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Comments

  • sondraf
    sondraf Member Posts: 1,544

    Tumor that size and sizeble lymph node involvement like that neoadjuvant (before surgery) chemo would more likely be recommended than not. Before they found my mets on scans that was the way it was going to go for me with a 5cm breast tumor and 1.7cm axillary node.

    Obviously it didn't turn out like that in my case (and the targeted therapy only shrank the primary by 40% and didnt shrink the node at all), but by shrinking the tumors now and getting some systemic treatment going they can hopefully kill off any little cancer cells that may already be circulating in the body past the nodes as well as conserve more skin and get cleaner margins for the surgery.

    Have you mentioned your discomfort with the speed to treatment and concern for a second opinion with the oncologist? I know it is overwhelming to be told you have cancer and then instantly hit the disease treadmill right away, and you have a right to a second opinion if you would like as it is your body - your MO should respect that ask - but its up to you to raise your hand and say you want to discuss this. Has the MO listened to your chemo worries and discussed them with you?

  • hartnsole
    hartnsole Member Posts: 24

    Thanks for the quick response. Yes, I've brought up my concern and the Medical Oncologist even recommended someone for me to get a second opinion from. It was her thought when she told me that I should get treatment started within the month, but the first appointment for the referral is 3/31. I emailed her my concern over starting without the second opinion AND waiting too late to start. She's out today, so hopefully I will hear back by Monday since all of my appointments start on the 15th.

  • sondraf
    sondraf Member Posts: 1,544

    The pandemic has really jammed a lot of things up - except when its GO time and the doctors swing into action and the patient and insurance company are both kinda trailing behind.

    I did get a second opinion from Dana Farber, but I had a second opinion service whereby someone chased my records and sent them off for me. I believe if you check MD Anderson there is a page for second opinion service and cost (its a few hundred bucks i think) and you need to send your information to them. Do you have access to your medical records in some sort of immediate format?

    Here is the Dana Farber link:

    https://www.dana-farber.org/appointments-and-secon...

  • threetree
    threetree Member Posts: 1,155

    Sondra - Had no idea anyone had a program like this Dana Farber one. Thanks for posting the link. I think it should be a help to many. I am not looking for a second opinion right now, but I am going to file this info away in case I need it later. I followed the link and the cost is $2,400.00. Whether insurance of any kind would cover all or a portion of it, they didn't say. I assumed it was cash on the barrelhead.

  • muska
    muska Member Posts: 224

    @hartnsole

    I am sorry you are here. Based on your description you have a large tumor with macromets to at least one lymph node. Looks like you are in good hands and your MO is doing everything possible to get you the treatment you need right away which is chemo.

    Your cancer isn’t just in your breast, by delaying chemo you are giving it more time to spread. If you need a week to see another oncologist and get the plan confirmed that should be fine but I don’t think significant chemo delays would be to your benefit.

    You didn’t mention your age and general health status. Both are important factors in treatment decisions. Assuming you are under 60 and in relatively good health I am not sure why you are so afraid of chemo. It really helps and current protocols make it much easier to tolerate.

    Good luck with your treatment!


  • hartnsole
    hartnsole Member Posts: 24

    Thanks Sandra, the site says it takes 5-7 days which honestly isn't long, but since my treatments start next week I think I'll wait to see if my Oncologist is really set on my starting my treatments immediately. It's hard to gauge if the quick turn around is because they are truly concerned it'll spread quickly (like get it now or you're risking it going beyond your lymph node) or if it's just because they know scheduling is hard to get atm and want to fit me in where they can.


    I'm going to bookmark the Dana Farber page and look into MD Anderson as well. I wonder if it's still worth a second opinion if I've already started chemo.

  • hartnsole
    hartnsole Member Posts: 24

    $2,400????? Ouch lol A few hundred I can handle... A few thousand not so much. I'll have to call them and get a definitive answer.

  • hartnsole
    hartnsole Member Posts: 24

    Thanks for the reply. I've watched a few videos about cancers that are similar to mine and it seems chemo before surgery isn't so uncommon. I'm 41 and my health could be better (I'm anemic and overweight with a few other minor issues). I've also had thyroid cancer before (2012). So, not the best, but not the worst.

    My fear of chemo is just fear of it causing other issues since it attacks other cells not just the cancer cells. Tbh, in my heart I feel as though I'll need it since there's a chance there may be some cancers somewhere that all the tests and scans didn't catch, I'm just still a little scared of it.

  • threetree
    threetree Member Posts: 1,155

    My thoughts exactly about the cost. A few hundred, OK, but thousands, YIKES!

  • 2019whatayear
    2019whatayear Member Posts: 463

    Do you happen to know if your cancer is Grade 3 and if it has a Ki-67 above 20%? In general PR negative cancer that is grade3 and has a higher Ki-67 is likely to have an oncotype score that is higher

    I know there are a lot of downsides to chemo but one thing to consider is that when you have chemo it will stop your period which is beneficial to stopping Er pos cancer -

    And I know you have really got your hands full here but if future fertility is a concern, you would want to address that with your doc asap.
    hugs

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,636

    The cost doesn’t surprise me too much. I had a second opinion, self pay, ten years ago that was $800.00

    Ten years ago that sounded very high. They did the whole tumor board thing and I’m glad I did. It didn’t change my tx plan but was reassuring.

  • salamandra
    salamandra Member Posts: 719

    If you are guessing about the insurance coverage for a second opinion, it's worth checking directly with your insurance company because a lot of them do cover second opinions. My insurance company proactively reached out to me to tell me they cover (albeit months too late, it was pretty ridiculous). Cancer costs them so much that I guess they're incentivized to get it right, I'm not sure.

    Don't feel pressured to get a second opinion though either. Even though the neurotic part of me wondered whether I should get a second opinion as a sort of best practices thing, my 'first opinion' felt right to me, and I never got a second one

    I'm no expert but based on what I see on these boards, with your age (which is considered young for breast cancer) and profile of the cancer, I would be really surprised if doctors recommended anything less than very aggressive treatment.

    I'm really sorry you're dealing with this, and I wish you all strength and luck for the road ahead!


  • hartnsole
    hartnsole Member Posts: 24

    I'm Grade 3. I wasn't given a lab to determine Ki-67 because the opinion on the results vary so much that they don't rely on them for their decisions (they said they didn't want me to pay for a lab they weren't likely to use anyway).

    They did ask me if I wanted to have more children.... and I do not. I have only 1 and I'm 41, so having another child at this age even without chemo would've been risky.

    I'm starting to feel better about the chemo being the right decision after reading a bit more. But now I'm fighting the feeling of thinking every pain or soreness I feel in my body is cancer that has spread somewhere else. One thing that's bothering me is that both lumps grew after the FNA biopsy. I was told this is normal since there was someone poking around at them, but still....


    I'm fine with it stopping my period and it staying gone even after chemo lol

  • hartnsole
    hartnsole Member Posts: 24

    Yeah, I think it's more of a re-assurance thing for me to. Something about seeing different teams coming to the same decision makes me more confident in that decision. I think I just feel extra rushed since I just found out this week about my treatment plan and the chemo starts next week. Most sites say you have time for a second opinion but it doesn't feel that way for me since I technically don't. They can give me an opinion about the remaining plan, but if I'm already on chemo that part of the decision can't be changed.

    It's weird though, because my mind goes back and forth so much. I've gone from wanting to wait for the opinion to wanting to get it over with already and get started to make sure it's not spreading anywhere several times today.

  • hartnsole
    hartnsole Member Posts: 24

    I didn't realize breast cancer affected older women more until I started reading these boards. I'm just going to pray for strength for myself and for my team and that the right decisions are made that lead to me having many many more healthy years to come. I'm looking forward to the day I can claim that I am a survivor and that this is all behind me.


    I'm planning to call my insurance and confirm how much of this they're covering. So far I've only had small co-pays and I was told the drug I'll need to inject after each session will cost about $50 a pop. I've not received a full picture of how much this will cost. When I ask the various doctors they just encourage me to apply for their financial assitance program ... which may be ominous.

  • minustwo
    minustwo Member Posts: 12,990

    hartnsole - when you get a minute, please go to My Profile and post your diagnosis & tests/treatment to date. It I will make it easier for members to answer. I couldn't tell if you are HER2+ or not. My MO was insistant that I start chemo right away because I was HER2+. I asked him what he would advise his mother, and that was the answer.

    Edited to say - so I actually cancelled a week in NYC to see a bunch of plays and a cruise to Alaska with my son.

  • 2019whatayear
    2019whatayear Member Posts: 463

    Since it’s grade 3 and it’s in the nodes and you are young and it’s PR- the oncotype is likely to confirm you’ll benefit from chemo. Chemo does suck but it is doable

    Hugs

  • hartnsole
    hartnsole Member Posts: 24

    Updated. Thanks for the reminder. I am Her2 negative. Sorry you had to cancel your event, I know that sucked. I can see how your doctors honestly would help make that decision.

  • hartnsole
    hartnsole Member Posts: 24

    Thanks for the hugs :-) I know I'll get through it. Hopefully it'll have the desired results of shrinking my nodes so that the surgery works more effectively.

  • wondering44
    wondering44 Member Posts: 247

    hartsnsole,

    You can request the Oncotype from your dx biopsy. The standard of care is to do the Oncotype after surgery. I asked for mine done before surgery. My MO ordered it from my dx pathology. I was glad to get the results before the mastectomy. It seems to take forever and a day to get the results. My Oncotype was 8, and based on that, and that cancer did not show in my nodes on other tests; I did not do chemo.

    It sounds like your MO is on the right path with chemo based on your results (I am not a doctor and less than a year old with cancer experience).

    If you want a 2nd opinion, discuss with your MO postponing chemo a week or two while you get a 2nd opinion. You have the right to be 100% sure about every treatment recommended. Ultimately, the decision is yours to make but discuss with your MO to get a medical recommendation.

    I recently learned MD Anderson starts the 2nd opinion from scratch. They pull your pathology and run pathology and genetic tests from your existing pathology. The MD Anderson rep will discuss costs upfront if your insurance does not cover the 2nd opinion. My insurance covers 100% once I meet my deductible, so I am ALL IN for a 2nd opinion. You can contact your health insurance provider to ask what they do and do not cover. MD Anderson has a different conversation with you than a local Cancer Center. If your insurer covers it, I don't see the harm in getting peace of mind with a 2nd opinion while you seek treatment elsewhere.

    I know you have a lot on your plate and the cancer dx is challenge and overwhelming at times. I send hugs and warm thoughts your way.

  • salamandra
    salamandra Member Posts: 719

    "When I ask the various doctors they just encourage me to apply for their financial assitance program ... which may be ominous."

    Doctors generally have no idea about costs and payment. Insurance stuff gets so complicated that most health centers have whole departments just to deal with it. So doctors are probably telling you about the one thing they know about that can be helpful, which is that they hope that the hospital can help if you need it. I wouldn't take it as ominous but I also wouldn't take it as the only answer.

    That said, there are a TON of financial assistance programs for breast cancer - we are lucky in that regard. Your hospital might have a social work department that can help you find them.


  • muska
    muska Member Posts: 224

    Speaking of second opinions in general, i don’t think they are necessarily a must in all cases. I didn’t get one before starting treatment because I had no reason to doubt my treatment plan. During my treatment, I got second opinions twice: first, to assess multiple nodules in both lungs discovered on pre-surgery CT scan, and second, to get some help with decision about the timing of implant exchange surgery (before or after radiation.)

    Most private insurance plans cover second opinions. I got mine from Dana Farber and they were covered by my insurance plan. Dana Farmer’s second opinion services someone mentioned on this thread, are for special cases when patients can’t travel to see specialists at DF. They get your records, review your test results and come up with treatment recommendations based on current standards. May be useful to international patients especially during the pandemic, but for someone who is being treated in the US, especially if it’s a centr or hospital that follows the same treatment standards I am not really sure this would be veryhelpful unless you have a special case that falls into a grey area.

    Best to all

  • hartnsole
    hartnsole Member Posts: 24

    Thank you. I'm going to give them a call on first thing Monday morning and look at other resources this weekend. I'm also going to look into services that assist with rides to appointments (when it's required that I don't drive) and perhaps a cleaning service to help out when I'm feeling a bit out of sorts. It's just my son and I and I'm trying to plan ahead as much as possible.

  • hartnsole
    hartnsole Member Posts: 24

    From what I can tell, so far my case isn't so unusual and I'm finding that the recommended plan is pretty common. Thanks for the additional feedback. Any information I can get is helpful during this process.

  • 2019whatayear
    2019whatayear Member Posts: 463

    there should be a nurse navigator that can help with stuff - just tell them what you need and they can help you get it -

  • minustwo
    minustwo Member Posts: 12,990

    hartnsole - My son came when the installed the port & did the first chemo the next day. After that I drove myself to & from chemo every time. He came for surgery & was here two days. After that I drove myself to a second round of chemo. Then drove myself to radiation every day for 6 weeks. Then Herceptin shots for the rest of a year. I really had no problems - except I slept a lot after I got home. And that was at age 70. The only time I couldn't drive was coming home from surgery.

    Down the road if I needed to take a Xanax for an MRI, I just planned to stay in the Medical Center and had lunch or kept appointments with other docs until I could drive home.

  • hartnsole
    hartnsole Member Posts: 24

    Hey MinusTwo, my son is only 13. Although, I'm sure he'd love to have an excuse to drive, I think it might be safer for both of us if he did not lol

    Thankfully, a friend of mine re-arranged some things and will be able to take me to go get my port put in and sit around and wait for me to get it out. I still plan on finding alternate resources though as she's about an hour away and I need a plan B.

    How was your experience with the port? Was it sore/painful for awihle afterwars? Do you remember how long you had to wait between the port placement and your first chemo session?

  • minustwo
    minustwo Member Posts: 12,990

    OH yes, I agree. Better to convince your 13 year old he's not quite ready.

    I loved my port. Had it in for several years. Someone had recommended that I draw my bra strap with a sharpie on my chest so the doc didn't place the port right there. Luckily my doc complied, and also placed it so I could wear most of my clothes w/o the port showing.

    Yes - I had my port placed one day and started chemo the next. They left the "tails hanging" so that the infusion department could easily access it that first time. Any soreness was certainly gone before the next 3 week chemo. I used 'emla' cream before each port access so there was never pain.

  • katg
    katg Member Posts: 206

    I just found this post and wondered how things went?

    hartnsole- Did you get a biopsy before the chemo?

    I wanted to say where you go is so important. I am at the City of Hope in Duarte California. My port went in 2 days before my chemo and is still in for at least another year. Aug 12th port. Chemo the 14th 2021. I was a platelet donor at the Red Cross for 25 years. Needles do not bug me. Sometimes the port area might throb, but it was put just over from the bra strap. It can be seen and Friday i asked at my blood dray with it, if mine looks normal. My nurse said what port they use, your body type and skin affect how it looks. I can feel it as it connects in my body. I googled the post after it was installed to see how it was done.

    I have a tube of cream i never used. Accidently ordered another so now i have 2!!

  • wondering44
    wondering44 Member Posts: 247

    The oncologist here finally got back to me this evening after I sent three requests to review labs the PA ordered and let me know what the results mean. Immediate stop of Letrozole due to increased Estradiol levels and not in menopause. I haven't found a study yet that shows I was supposed to take Letrozole without OS if I was not in menopause. So many thoughts...

    My mom fell ill unexpectedly two weeks ago. It was hard to push aside while sitting with my mom in hospice this weekend before she passed away.