Just dx at 61 - grade 3 IDC, est+, prog-, Her 2+ - 2nd opinion?

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peg645
peg645 Member Posts: 19
edited June 2015 in Just Diagnosed

Hi, everyone -

This is the first time I've typed the word cancer. A hard thing to do.

Significant family history - on my father's side, but also my oldest sister's daughters - both dx at 37, and next oldest sister last year at 68. My mother has no history, nor does oldest sister. No BRCA found when my nieces were tested.

I live in a rural area, but just outside a town renowned for its hospital system, extended in dozens of area small communities.

Just had first meeting w/ the surgeon Friday, and it was then I learned this tiny tumor - just .6cm - found only in a 6 month mammogram - is aggressive. I sure know what Her2 means now, and am shuddering at the cost of Herceptin. My current work contract expires in a month - which is when I plan on having surgery (lumpectomy and sentinel node biopsy) and beginning additional treatment. Am scared it will be very hard now to find new work. But that's to worry about later.

My niece has a recurrence currently, and lives outside Boston so goes to Dana Farber. Since I haven't had my surgery yet, the things I know (doesn't seem I have enough info for this board's diagnosis) are still limited. But my local surgeon has a treatment outline created.

It has been strongly suggested by my niece and sister that I get a second opinion. I agree it doesn't hurt to have one, and get additional info - and having family in Boston and Dana Farber being a cancer center - makes sense.

So, foolish question - when? Before the surgery I'm guessing... Should I travel, or is sharing the info enough to start? Is it very typical? Next oldest sister lives in the south, had a second opinion at Johns Hopkins where they used a 3d mammogram and found an additional tumor. My local surgeon is getting me set up for an MRI to check for the same.

Appreciate any and all advice and experiences. I am frankly numb that I have this - am pretty healthy and active, and really ticked off that after this winter, I can't just enjoy the summer. ;-) But glad it has been found at this point. Thanks again.

Comments

  • Sjacobs146
    Sjacobs146 Member Posts: 770
    edited June 2015

    peg645, I'm so sorry for the circumstances that brought you here, but glad that you found us. There are a ton of great people on these discussion boards.

    I personally did not get a second opinion since my hospital has a tumor boards where all the docs look at every case and make recommendations together, so I felt that I had multiple opinions built in. If you are trying to decide between lumpectomy and mastectomy, I'd get the second opinion before surgery. They do learn more after surgery. For example, I did not think I'd need chemo, but since one of my nodes was positive and I have an intermediate Oncotype score, I ended up needing it. So if you're only going to do lumpectomy, you might wait until after surgery for the second opinion.

  • I_Spy
    I_Spy Member Posts: 507
    edited June 2015

    Hi Peg -- welcome, and sorry you're here. I am in a major city with a major comprehensive cancer center, so I didn't get a second opinion. If I were in your shoes I would definitely get a second opinion. And I would do it before the surgery. You don't want to have a surgery (which is upsetting and overwhelming no matter if it is "just" a lumpectomy) and then find out you need another one or that it should have been done differently to begin with. You haven't had tons of treatment so there isn't tons of medical records to collect; so just grab what you have and call. When you call the cancer center they know how to arrange for a second opinion appointment, they do it all the time. Good for you for taking charge, this is an overwhelming time.

  • peg645
    peg645 Member Posts: 19
    edited June 2015

    Thanks, ispy and Sjacobs.

    Yes, have read about tumor boards online, but that wasn't mentioned at the local hospital. Wondered how that works.

    And good to know I can call the cancer center direct - I was asking my niece about a referral to Dana Farber, but once I confirm it's ok w/ the insurance company, I'll just call them myself. She has enough on her plate.

    Current treatment outline is just the lumpectomy for surgery, as my surgeon says it appears it makes little difference if you do the masectomy or lumpectomy. But reading just through the histories on this board, as well as seeing how the diagnoses change, who knows what I'll end up doing? This was just a "tiny" tumor so I was sure that meant probably lumpectomy and maybe radiation, and boom - start looking for work again. Aha. But after the Her2 discovery, and being told I'd need Herceptin and chemo and radiation probably...it has been overwhelming. While I'm feeling great physically, I'm seeing months of illnesses and issues on the horizon. But the "future" is starting to balance out a bit reading the boards.

  • momand2kids
    momand2kids Member Posts: 1,508
    edited June 2015

    Hi

    Sorry you find yourself here-- I was treated at Farber-highly recommend it... I wanted to encourage you to hang on to "I am feeling great physically"... you won't be "ill" unless you have a reaction to the drugs--- but I find that getting through chemo and working was more of a mental game than a physical one. I also want you to know that my best friend was HER2+-had long chemo, herceptin, radiation-- and she worked throughout and was the #1 sales person in her company that year--not saying that is the goal, but she decided early on that she was just going to muscle through-- when I was having chemo I just lolled about in the chair--she had her computer, was working like a dog--- it was impressive. Again, not everyone can do this and I am not suggesting that you do--- but there is a very good chance that you won't be ill... you will be tied up with chemo and herceptin, it will take time, you won't always feel "great" and you may need to slow down a little, but you may never be sick.... I hope that for you.....


  • I_Spy
    I_Spy Member Posts: 507
    edited June 2015

    Peg is your surgeon, who is recommending lumpectomy etc., a breast cancer surgeon, or a general surgeon? Like does he/she specialize in breast cancer, or does that along with other things? And no, you don't need a referral for a second opinion. Frankly, I would call Dana Farber and have them help you with the next steps. Let them tell you "We need x,y, and z," rather than trying to guess what they need before you call.

  • Ddw79
    Ddw79 Member Posts: 533
    edited June 2015

    I am 63 with high risk for BC. I am going for a second opinion next week at DFCI. I know the docs pretty well there from the BRCA 2 testing u family participated in .

    You can pm me if you want anymore info on DFCI .


    Oh yes and they have a Coorfinator for these things. It's like a well oiled machine. They told me exactly what to round up and it took awhile but I've Ben waiting two months already for this appointment next wee

  • debiann
    debiann Member Posts: 1,200
    edited June 2015

    I am triple positive. From what I read prior to meeting my MO, the same tx was going to be recommended to me wherever I went: surgery, chemo, and maybe rads depending on node status and weather I chose lx or mx. So I felt comfortable skipping the second opinion.

    With even a small Her2+ tumor, I think chemo with herceptin is going to be recommended no matter where you go. It will basically be your choice if you want to do it. Herceptin is very effective. Neo-adjuctive (before surgery) chemo with an addition of perjeta is now being offered for Her2+, but I think your tumor is too small. But if you wanted to look into this it would be a reason to seek a second opinion before surgery.

    When it comes to surgery you will be given two options, lumpectomy with rads OR mastectomy and possibly no rads needed (if node negative and tumor not located near the chest wall). Some people fear rads others say its a breeze. 

    Anywhere you go you are going to be told the same thing, ultimately your chance for survival is the same with either option. In the end it's your choice to make. Its a very personal decision and if you go searching for the "right" answer you will be truly disappointed, because it does not exist. Both options have pros and cons and neither guarantee you will not have a recurrance. It is impossible to remove all breast tissue, even with an mx. There are many threads on here that discuss topic.

    Many work through chemo, others can't, you won't know which one you are till you try it. I rarely miss work. I took off only a week for a hysterectomy, so everyone was very surprised at how chemo kicked my butt and I did miss alot, and couldn't really function as myself when I was there.

    You may want to look into short term disability options and medicare/medicaid/obamacare or whatever insurance help may be available to you to get through this. Its just for a few months. You'll be yourself again soon. Good luck to you.

  • dlb823
    dlb823 Member Posts: 9,430
    edited June 2015

    peg, you have nothing to lose by getting a second opinion from a medical team that specializes in breast cancer 24/7. I always say, even good docs just don't know what they don't know, and some of that knowledge can be attributed to seeing & treating many more cases of breast cancer than a general surgeon, especially in a non-populated area, ever will. Besides, it's always good to learn as much as you can, and if something that a second opinion surgeon tells you, or a more sophisticated test, etc., influences your decision about surgery, better to find it out before you end up requiring a second surgery, as I did (detailed on my bio page).

    If after a second opinion you decide you are 100% comfortable with surgeon #1, you can always proceed with surgeon #1, but at least you will have a basis of comparison. (((Hugs))) and good luck! Deanna

  • Rockym
    Rockym Member Posts: 1,261
    edited June 2015

    peg, I had my slides sent to Johns Hopkins for a 2nd opinion. I didn't have to fly (although the slides were packed up and sent). My initial biopsy pathology (before surgery) was written sort of vague and I didn't feel confident with the individual who wrote my first report. The 2nd pathologist read the slides and the report came back much more concise and clear. I was far more confident about my treatment decisions after that. I also physically met with two separate oncologists. The first wanted to treat me aggressively and the 2nd was more conservative. I stayed with the 1st MO (nearby, well recommended, etc.), but requested the 2nd MO's treatment plan. Lumpectomy, chemo, rads and I'm done. 4 years out next week! Good luck in your decisions.

  • peg645
    peg645 Member Posts: 19
    edited June 2015

    Hi, Everyone -

    Thanks so much for all the replies. I apologize for not responding earlier - I had read every reply same day. But still working crazy hours, and, of course, trying to work through plans. And, then keep forgetting my laptop cable when I'm away during the week at work! I have just picked up a tablet finally - figure it's about time and know I'll be online A LOT in the near future. ;-)

    I have been in touch w/ Dana Farber and expect to hear tomorrow when I'm scheduled to see them. Have already requested med records be faxed, and images saved to a CD. With my niece in Boston, and my sister buying a place near there, it might even be where I go for treatment. Agree, I'd like to hear what they think of my local hospital's plan, but it may very well be an option. Am just so thankful for the opinions specific to my case. I have confidence in my local surgeon - she is general, but does the majority of breast/oncology surgery at the hospital. What has me a bit concerned is some dropping the ball support staff wise.

    Just keeping an open mind and learning as much as I can.

    Good news - I think - after everyone has been applying to jobs for the last several weeks, they told us today they are hoping to keep us on another 4 months. And after that if willing to travel. So my fear of losing employment is at least put to the side for now. Will know for sure tomorrow. No disability with this contract job - but the pay rate is excellent. I have just mentioned to a supervisor today that if we are renewed July 1, that I will be needing some time off for some health issues. Don't plan on details unless any course of meds will make things obvious.

    Feeling much better about things after a week. And the words above have meant alot.

    And hoping to learn much more from all of you. When not working (and my battery is charged!) I'm more often online and involved. Thank you all for the responses. I will keep you posted.

  • peg645
    peg645 Member Posts: 19
    edited June 2015

    It's getting close. My appts for 2nd opinion at Dana Farber are scheduled on Monday. Have so much up in the air, also, with the hoped work contract renewal teetering. May be out of work on June 30 afterall...until the next contract.

    For now, surgery for a lumpectomy and sentinel node biopsy scheduled early July locally. Looking forward to hearing the opinions of those at Dana Farber. Am very anxious to know the suggested treatment plan - and how much time I would lose from work down the road - my job requires long hours, and little else is available to me - unless I travel considerably - and that doesn't fit either...

    However, was buoyed by a call from my local hospital from a nurse coordinator. It's the first they've had someone call me who finally seems to be overseeing what is expected. They had previous appts planned for me that weren't made at first - I inquired and pushed a few times for my med records for the 2nd opinion. A friend of my sister's gave me a good name "inside" to inquire of, and, coincidence or not, I finally got a call from someone who appears may be helping keep things together.

    Thought I'd learned enough life lessons. Think I'll be picking up several more...

    Wish me luck.

  • GrammyR
    GrammyR Member Posts: 702
    edited June 2015

    peg645-Glad you are getting another opinion before any surgery done. I would not elaborate to your employment supervisor until you know a plan. They may find some reason to not renew your contract. If you have decent insurance that will help- still there are deductibles and such . A surgeon only deals w/that aspect ,all other Rx like chemo or RADS done by a breast cancer oncologist and radiation oncologist. Having a nurse advocate is certainly helpful. Hugs

  • peg645
    peg645 Member Posts: 19
    edited June 2015

    Thanks, GrammyR. I have been keeping quiet, just have mentioned I'll need some time off for a medical procedure in the near future. Had thought about divulging more after the 2nd opinion, then thought twice about it. The contract is for my entire company, but there are many of us so my being missed doesn't really matter. Just to me. ;-) Only relies on big hiring company's eventual decision. Can keep the insurance through Cobra, but am close to 1 year so really hoping to be able to stay employed through that date at least for other benefits. Have been promised work elsewhere if not renewed, again requiring a temporary change of location. So really hoping to stay put. Would be much easier.

    Thanks for the hugs.


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