Newly diagnosed at age 42

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girl_richy75
girl_richy75 Member Posts: 16
edited February 2018 in Just Diagnosed

Hi everyone, I got my biopsy results this past Tues 1/17/18. I am at least a stage II because of the size, grade 1, and I am ER and PR positive, HER2 negative. My oncologist/surgeon recommended a lumpectomy with sentinal lymphnode dissection to see if it's spread.

There is not a strong family history from what I know... my mom, aunt, and cousins have never had breast or ovarian cancer. My dad was an only child, but his mom did not have cancer, nor the female cousins I have in that family. But I don't know much about my paternal grandfather or his family.

Should I request an MRI before surgery? I didn't even think about doing a mastectomy, but now I wonder if that should be considered.

So far, I've been able to function at work fairly well, and stay in the moment. Of course, I feel fear, but for whatever reason, I've been able to work through it. And, I try to stay away from general internet info... My mom had lymphoma, and I remember the fear when scans were coming up. Now, I'm afraid I'll always wait for it to recur even if I'm able to get to the cancer free stage.

Any advice or encouragement you can give will be greatly appreciated!

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Comments

  • Okkate75
    Okkate75 Member Posts: 151
    edited January 2018

    Hello! I'm also 42, diagnosed in November. I did what your surgical oncologist recommended to you, and now I'm two weeks into chemotherapy. The lumpectomy recovery was surprisingly easy, and I don't regret the decision to do that rather than a mastectomy given what the conversations I've had with my docs. The worst part so far, by far, is where you are right now, trying to figure out what the plan will be. I had an MRI before surgery, and it really put my mind at ease that they were going to get what was there. I'd recommend it. And continuing to stay away from the internet! I wish I'd been able to do that. Good luck, and know that you can do this!

  • Moderators
    Moderators Member Posts: 25,912
    edited January 2018

    girl,

    We are so sorry to hear of your diagnosis, but we're really glad you found our amazing community. Thank you for reaching out. As you can already see, there are so many wonderful members here always willing to lend support, advice, and share experiences. We hope you'll stop by often, share with us, and ask lots of questions -- we are all here for you!

    Wishing you the best in your treatment journey!

    --The Mods

  • coraleliz
    coraleliz Member Posts: 1,523
    edited January 2018

    I didn't request an MRI before surgery. But my surgeon had second thoughts. Apparently it wasn't necessary per studies & protocols. She said I was an impossible breast exam because of density. Sure enough the MRI found a tumor in my other breast. It was stage 2(2 nodes positive). The 1st one they found was stage 1(no nodes involved). When bilateral BC is found upon initial diagnosis, there is usually a family history. None for me.

    I'm hesitant to post this, because I know I'm the exception not the rule here. But you can always ask for an MRI if it will put your mind at ease. And then there are possible insurance issues.

    Best of luck with your upcoming surgery.

  • Donna0904
    Donna0904 Member Posts: 5
    edited January 2018

    Hey...

    I think we are beginning this journey together. I was diagnosed last Wednesday and the initial path says ILC. We are hoping we will have the exact details. I also had a core biopsy of a lymph node in the office. I opted to have a breast MRI and PET scan to see the full picture. I also have Crohn’s Disease (IBD). I agree the massive amount of information is overwhelming. All the emotions and then having to make life changing decisions is a lot. I’m staying positive and praying for discernment. Hopefully we can in touch since we are newbies

  • girl_richy75
    girl_richy75 Member Posts: 16
    edited January 2018

    Donna, I hope your scans give you peace of mind and reveal nothing new.

    I am sorry that we are all on this particular journey, but I'm thankful for you all and your input.

    Thank you for your responses, for sharing some of your story, and for your encouragement. I called this morning and left a message with my nurse navigator - I asked for the MRI, or any scan that would help me know if I have just the one tumor, or if I'm dealing with more.

    You know how I said I was handling it at work ok? Well, today, not so much. I'm worried about the BRCA gene, and if I have ovarian cancer. This is probably my mind running off with itself... but it's just where I am today.

    I just recently finalized a difficult divorce (not that any are easy) but I thought I was finally moving forward... I was house hunting, enjoying time with friends and family, really active in my gym... and wham. I really do want to make the best of this situation, and survive/thrive. I'm just having a tough morning.

    I do want to say thank you again for the information, I am pursuing the MRI because of it.

    I'll stay in touch, and I would really like to know how things progress with you all.

  • msphil
    msphil Member Posts: 1,536
    edited January 2018

    I did too sweetie for awhile then I decided to fight n tell this cancer to leave my body Positive thoughts like I will get thru this I was also 42yrs old n planning Our 2nd marriages when I found the lump. I am now a 24yr Survivor this yr Praise God.. Believe it is done. I did. God Bless msphi idc stage2 0/3 nodes Lmast chemo before n after surgery got married then rads 7wks and Tamoxifen 5yrs. Believe n Hope.

  • Georgia1
    Georgia1 Member Posts: 1,321
    edited January 2018

    Hi there Girl Richy. I'm going to encourage you to go for the lumpectomy if your surgeon agrees, since the recovery from surgery is fairly easy. Depending on the size of the mass and other factors you may need six weeks of radiation, but I found that easier than I had feared, in large part because of the amazing support on this forum. Once you have a treatment plan, you and Donna will feel better I bet and more in control. This will all be in the rearview mirror pretty soon, and you will be back to enjoying your life I promise.

    On the MRI, they are really helpful tests but they also churn up false positives sometimes, and the technology tends to estimate the size of the BC as larger as it really is. So just be mentally prepared for that. But I found the MRI results comforting, and they were certainly helpful to my surgeon.

  • jo6359
    jo6359 Member Posts: 2,279
    edited January 2018

    on December 11th I was diagnosed with a 1.2 Cm tumor in my right breast. It was cancer. My SO ordered a breast MRI and two weeks later they found an additional 1.2 cm cancer in my right breast. If it hadn't been for the MRI I would have had a lumpectomy and SNB.. Two tumors in the same breast changed everything. Now Im scheduled for a BMX and SNB. I wasn't happy with the outcome but grateful they found it prior to the lumpectomy. If not, I would have had to go back and have a mastectomy. There's so many tests, who knows? And my situation it was a blessing.

  • SavedbyGrace1972
    SavedbyGrace1972 Member Posts: 105
    edited January 2018

    Hello Girl Richie

    Welcome to the forum. It’s natural to feel afraid. The more you know, the more your confidence will grow. My surgeon requested an mri then I had another mri guilted bilateral biopsy after the first mri reveled more tumors. Just had my surgery yesterday and I am in the hospitaL right now.

    Good luck with your decision. BTW, I had to do mastectomy due to the number of tumors in my left breast and how far apart they were.

  • Cpeachymom
    Cpeachymom Member Posts: 518
    edited January 2018

    SavedbyGrace1972- speedy healing to you! Rest and recover.

  • girl_richy75
    girl_richy75 Member Posts: 16
    edited January 2018

    So far my surgeon has said he does not want to do the MRI, and I'm concerned. He said there are two studies that show MRIs lead to some unnecessary mastectomies. I also had to ask for genetic testing. He said he did not want to postpone surgery to wait for the results. Fortunately, the genetic counselor was able to rush some of the gene tests and I'll have the results before surgery.


    I don't know what to do about the MRI except insist I get one.

  • girl_richy75
    girl_richy75 Member Posts: 16
    edited January 2018

    SavedbyGrace - praying and hoping for a speedy recovery for you!!!

  • KBeee
    KBeee Member Posts: 5,109
    edited January 2018

    If my surgeon told me he did not want to do an MRI before rushing into a lumpectomy, I would absolutely seek a second opinion. The fact that he's in such a rush concerns me. Your tumor is grade 1, which means it is likely not fast growing. You do have time on your side. At your age, breasts tend to be dense. If you were 30 years older, with less dense breasts, it might not be an issue. I would not even consider a lumpectomy without an MRI. I believe it has findings which alter treatment in 4-10% of cases. Though 90-96% of the time it doesn't, if you are one of the 4-10%, it is huge. MRI is the first thing my surgeon ordered once diagnosed. We canceled it once I chose mastectomy, but my build, tumor location, and family history were the deciding factors for me.


    The fact that he does not want to postpone surgery to wait for results raises a big red flag. Are your best interests what he has in mind, or is filling his surgery schedule more important? Specifically ask him what the rush is. He needs to allow you all of the tools and knowledge necessary to make an informed decision. It's so easy for them to say you can just "go in for more surgery later" if you learn of anything else. It's not a McDonald's drive thru we're talking about, and some surgeon's don't get that we want to make the best choice and be done with just one surgery. I would for sure request a second opinion (even if the first one allows the MRI). You may very likely stay with the first surgeon, but another opinion is always valuable. Best wishes.


  • girl_richy75
    girl_richy75 Member Posts: 16
    edited January 2018

    I've called my nurse navigator and my family doctor and asked to get referred for a 2nd opinion. I'm just hoping it doesn't slow op the process too much. This tumor was misdiagnosed as a fibroadenoma in Oct 2016. I'm anxious to get it out, even though I do want the information.

  • kika2013
    kika2013 Member Posts: 101
    edited January 2018

    Hi--chiming in here to offer my experiences along with everyone else's. I was diagnosed at 42 also, no family history, ER/PR+ HER-, grade 1.

    The first thing I did after having my initial appointment with the surgeon was an MRI. I agree with others who say this is valuable information. In my case, she didn't think there were any other tumors but she ordered it anyway just to be sure. She was correct, but I had huge peace of mind knowing we had all the information. I also waffled a lot about mastectomy/lumpectomy. I ended up changing surgeons and the one I went with (who was amazing in every way) gave me this very, very smart and helpful piece of advice: she told me that if I was undecided, I should have a lumpectomy and node biopsy to check the lymph nodes and get the tumor out. Then we would truly have all the information, and I'd also still have the option of having a mastectomy later if I was having trouble dealing with the anxiety of yearly scans, etc. That is exactly what I did. Then I had radiation (the "short course" which is also called the Canadian protocol, proven to be just as effective as the 6 week course) and started Tamoxifen. By that time, I had all the genetic test results in, the oncotype on my tumor and everything else. I decided not to have a mastectomy after all, but the knowledge that it was still an option was so comforting as I made my way through decisions and treatments. As my surgeon said, you can't put anything back if you have a mastectomy, but you can always have more surgery later if you have a lumpectomy.

    I also agree with others saying there is no rush. I went about 6-7 weeks between my diagnosis and surgery (and even got in a vacation) and no one was concerned (and I had great care at an NCI Cancer Center). It feels like an emergency right now but it truly isn't. The most important thing is to take enough time to think through your options. It's so hard, and there's so much to learn and consider, but you really do have some time.


    I'm now 4.5 years out (!) and have no regrets about my choices. You can do this. Like you, I was diagnosed on the heels of some very intense stress in my personal life/family and I felt like I hadn't even had time to recover from that. But I did, and you will, too. These boards are real life-savers and you can ask anything, any time. Sending you the very best wishes and lots of strength.

  • girl_richy75
    girl_richy75 Member Posts: 16
    edited January 2018

    I so apprexciate that advice an encouragement. The nurse navigator said that my insurance may not pay for a scan because the radiologist was able to make a determination without one ???? That was written before my biopsy. I am soooooo tired. I am truly not sure what to do... she recommended I wait to get the gene est back and then ask for the MRI. I'm not sure about doing that either.


    My family Dr did write an order for a referal for a 2nd opinion.

  • kika2013
    kika2013 Member Posts: 101
    edited January 2018

    I would let them actually talk to your insurance before you worry about that. I had my MRI after my biopsy, so there was no question as to whether or not it was cancer, and my insurance covered it. The MRI is one piece of information that will help you make choices about surgery and treatment. In my case, had mine turned up more tumors I might have elected to have a mastectomy (I have small breasts, yes, a source of constant humor throughout this process which actually ended up being helpful!). Similarly, the gene testing might affect your choice, ie, if it turns out you have one of the mutations that makes you likely to get more breast cancer, you might choose a double mastectomy. If it turns out you don't, you might feel more confident with a lumpectomy. I'm not recommending, just trying to give concrete examples. You should definitely do the gene testing, but the MRI is also a helpful tool in deciding what surgery to have.

    No doubt you're tired! I remember feeling like I'd been run over by a truck or something. All the more reason to slow down, take each step one by one. You will get it figured out. Do you have a friend or relative who can be your sounding board and process all the information with you? It can be really helpful to have someone on the outside be a second set of eyes and ears. Hang in there. As everyone says, this is really the hardest part.

  • girl_richy75
    girl_richy75 Member Posts: 16
    edited January 2018

    BTW, I got the gene testing yesterday. They are rushing part of the results, and some of them will take a few weeks to get back.

  • melmcbee
    melmcbee Member Posts: 1,119
    edited January 2018

    i was also 42. I wasnt given the option for a lumpectomy. I needed to choose single versus bilat mastectomy i had mri and it only showed in one breast but i chose bilat mastectomy cause i heard lobular cancer is prone to go to other side. I dont know if thats true but wanted ti tell you. On the day of mastectomy my lymphnode cold slice was negative. They removed some and sent off for pathologu. A week later i was told i needed and axillary dissection. I ended up with 8 out of 15 positive nodes. Lobular hides. Prayers and hugs to you. And remember this is your show not theirs. You are in charge

  • girl_richy75
    girl_richy75 Member Posts: 16
    edited January 2018

    So, I have been scheduled for a CT and bone scan, but not an MRI. I did find out from another doctor that my surgeon is one of the best in this area. I am getting stat results on part of my genetic test, the part that includes BRCA before my surgery. And, the other surgeon's office where I'm seeking another opinion hasn't called back yet. My family doctor referred me for the 2nd opinion. I may end up staying with the surgeon I have based on what I know.

  • kika2013
    kika2013 Member Posts: 101
    edited January 2018

    That all sounds encourgaging. I didn't have a bone scan or CT but I'm sure others have and will be along to share their experiences with you. It's great news that your surgeon is top notch and also that you'll have BRCA results before deciding about surgery. Every step gets you closer to a plan. Hang in there and remember to sleep and eat as much as possible.

  • lizardesque
    lizardesque Member Posts: 10
    edited January 2018

    I'll just weigh in with my experience. I was diagnosed in November. After the initial biopsy results were back, the plan was surgery then chemotherapy. However, I had an MRI, a CT, and a bone scan, and for me, those results altered the treatment plan. While the imaging studies didn't show evidence of metastasis, they did suggest that my tumor was much larger than originally suspected. So, my treatment plan changed to put chemo first to try to shrink the tumor before surgery. I'm in chemo now, and the tumor has shrunk noticeably since I started.Hope this helps. Best of luck.

  • Braver17
    Braver17 Member Posts: 4
    edited January 2018

    Lizardisque...your tumor size? Mine were0.8cm and 1cm. I only was given MRI before the surgery and tumor sizes were bigger than sizes from post surgical pathology report.

  • Braver17
    Braver17 Member Posts: 4
    edited January 2018

    girl_richy75.....just want to share with you my surgical decision for your reference..... I was 47 and had BMX 6 months ago with no reconstruction ... I had two tumors 0.7cm and 0.9cm in one breast from diagnosed biopsy, both ER+ PR+ HER2-with low ki67. My surgeon gave Lumpectomy as first option, then mastectomy. I can tell that she prefered Lumpectomy over mastectomy on my case and kept saying few times “you are so young”. Because she is a professional doctor, her preference had very heavy impacts on my thinking and I was debating between lumpectomy and mastectomy. It was very tough time! After I read many many sister postings on BSO and carefully read all their available treatment information, especially Stage IV sisters. My surgeon kept saying that survivor rate was no difference between lumpectomy and mastectomy. In the last minutes, I chose BMX and cancelled reconstruction. No regrets! Chemo wasn’t recommended to me due to low Oncotype score.Being flat is fabulous!


  • girl_richy75
    girl_richy75 Member Posts: 16
    edited January 2018

    I appreciate everyone's input. So far I have tested negative for the BRCA gene mutation, and 6 other mutations that cause cancer. I am relieved to know that much.

    I had a CT scan and total body bone scan yesterday, and I should know the results this morning. Praying and hoping that I get good results there. My blood work is excellent, no elevated calcium or other blood test sign of mets. Surgery is still scheduled for Feb 5. I go in first for mapping of the tumor to get good margins and then to the hospital to get this thing out, and take come lymphnodes. I will be relieved to have that done, and to then hopefully have a great plan in place.


    Thank you again for your input.

  • SummerAngel
    SummerAngel Member Posts: 1,006
    edited January 2018

    I'm confused as to why you had a CT and bone scan. Do you have other concerning symptoms? With your diagnosis it is typically not recommended unless you have physical symptoms. https://www.medscape.com/viewarticle/761596

    "One instance is patients with early-stage prostate cancer and early-stage breast cancer, who have a low risk for metastasis. In these cases, advanced imaging technologies, such as positron emission technology (PET), computed tomography (CT), and radionuclide bones scans, should not be used to determine whether the cancer has spread, the authors note.

    'These tests are often used in staging evaluation of low-risk cancers, despite a lack of evidence suggesting that they detect metastatic disease or survival,' the authors state. 'Unnecessary imaging can lead to harm through unnecessary invasive procedures, overtreatment, and misdiagnosis.'"

    As for the MRI, though, I would fight for it unless you are one of the lucky ones who doesn't have dense breasts at your age.

  • girl_richy75
    girl_richy75 Member Posts: 16
    edited January 2018

    Because the cancer was originally thought to be a fibroadenoma in Oct 2016 (and I got the diagnosis in Jan 2018) I asked for the scans to make sure it has not spread. He did not want to do the MRI, but he ordered the other two scans at my request.

    A radiologist told me if he had a sister or mother with this diagnosis, he would do the bone scan for peace of mind. The doctor seems to feel that the MRI can lead to unnecessary procedures. I don't know whether or not he is correct about the MRI, but I will say I have talked with more than one person, and they all highly recommended him.

    Going for a 2nd opinion meant I was going to have to put off surgery, which is not something I wanted to do. The other surgeon could not see me right away.

    I've been divorced less than a year... my ex-husband took off after I was there when he had cancer, 13 years of marriage... My parents are deceased. I don't say that to complain - I'm just making these decisions the best I can, on my own. I am in this a bit on my own, and I'm just trying to do the best I can. I work two jobs, and taking time off from work is a factor also. I'm on paid leave two weeks for surgery, and I'm just trying to make the best decision I can each day. In my favor is that I'm in excellent shape otherwise, so I hope to fight this hard, and successfully.

    That is all I know to do.

  • SummerAngel
    SummerAngel Member Posts: 1,006
    edited January 2018

    It's true that an MRI is very sensitive but not very specific, so it can lead to more biopsies and worry. I was just surprised you had the other two scans but no MRI. My left-side tumor was diagnosed as a fibroadenoma, too. In fact, it was biopsy-proven to be a fibroadenoma and I had it removed because my doctor recommended it. (My situation was very unusual, I had a tumor grow inside a fibroadenoma.) My right-side tumor was found on MRI, and was not visible on a mammogram due to dense tissue. I had very similar circumstances to yours. As for wanting to hurry to surgery, please try not to worry too much. Grade 1 tumors tend to be "lazy".

  • KBeee
    KBeee Member Posts: 5,109
    edited January 2018

    Doctors tend to do scans more often in younger women because their tumors notoriously do not always "behave" as expected. They take a lot of factors into consideration other than just tumor size and lymph node status. Based on the fact that the tumor had been there for a year, it seems very reasonable for a doc to agree to a scan. Guidelines are guidelines, not set in stone rules, and docs need to consider each patient as an individual.

  • girl_richy75
    girl_richy75 Member Posts: 16
    edited January 2018

    SummerAngel - thank you for the encouragement - my scans came back normal, no apparent spreading of te tumor, but I'm going to request the MRI one more time before surgery. :) It's worth a try.

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