Grade changing from 2 to 3. How can that happen?

radtk018
radtk018 Member Posts: 4
edited July 2015 in Just Diagnosed

I thought I had it all figured out for a "plan". Told on June 29th I have invasive ductal cancer based on pathology report of biopsy. Estrogen/Progesteron positive and HERC negative. I made the decision to do a lumpectomy since it was Grade 2. Doctor told me it wasn't possible to know the stage until they removed the tumor and did the Sentinel Lymph Node test. One lymph node removed, tested negative. Clear margins. Diagnosis: Stage 1 Invasive Ductal Carcinoma. BUT, that biopsy said Grade 3! How can there be two different grades??? Plus, both my nurse coordinator and the oncologist I met last week kept quoting I was grade 2. Had I known it was grade 3, I believe I would have elected a mastectomy. With the lumpectomy, I knew I would do radiation and leaned towards not doing hormone therapy for my own personal reason. I don't want to do hormone therapy. Now I wonder with grade 3, should I consider chemo???? I just don't understand how the first biopsy said grade 2, and second grade 3. I also don't understand how both the nurse coordinator and oncologist kept stating grade 2 after lumpectomy until I got to see the pathology report and pointed out the grade 3. What would you do? Anybody else have their grade changed after two biopsies?

Comments

  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited July 2015

    I'm sorry your grade changed at pathology. Surprises at this point are hard to swallow. Grading of tumors is subjective to the pathologist. Also the lumpectomy specimen typically is deemed to be more accurate in terms of overall results. It is likely that your doctor may tell you about the Oncotype dx test that measures the recurrent score based on the biology of your tumor. This score generally is considered to trump grade. You may also consider getting a second opinion on the pathology from a large institution like Johns Hopkins. Hang in there. Node negative and ER PR pos is good too. It is likely that hormonal therapy will be recommended with a lumpectomy or mastectomy. You can also choose to do the mx at a later date. if you choose. All of this info is hard to wrap our mind around at first. If the anxiety gets to be too much for you talk to your doctor about using anti anxiety meds for the short term. They can really help.

    I'm glad you found us. There is a wealth ofinfo here and we're open 24/7 to help! Gentle hug!

  • Italychick
    Italychick Member Posts: 2,343
    edited July 2015

    mine came back as grade 2, but my MO kept saying grade 2 and 3 because she was pretty sure there was probably some grade 3 in there too. Also, there are lots of women that post here with stage 3, grade 3 tumors that are many years down the road and doing fine.


  • SpecialK
    SpecialK Member Posts: 16,486
    edited July 2015

    Tumors are not homogenous - meaning they are not necessarily the same grade throughout. It is entirely possible the biopsy sample was from a location of the tumor that was grade 2, and when the tumor was removed in its entirety more of it was grade 3. I would also recommend having an Oncotype test done to determine your recurrence risk. The Oncotype Dx score determines the benefit of adding chemo to hormonal therapy - however, your score is predicated on using anti-hormonal therapy. My understanding is that your recurrence score roughly doubles without it.

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

    Tumors are not always homogenous, or the same throughout, so that could explain why the small amount taken during biopsy was a grade 2 but when they tested the whole tumor there were areas of grade 3. Grade means how fast the cancer cells are dividing. I don't think the difference between a grade 2 or a grade 3 tumor is going to change your treatment plan and should really not be a big worry to you. Are they doing an oncotype test to determine the benefit of chemotherapy?

    Surgery, radiation, hormone therapy, and chemotherapy treatments all serve a different purpose. For the most part, you can't do one to skip another. The exception is for node negative, small tumors not close to the chest wall. In that situation, a mastectomy can be done and radiation can be skipped.

    Surgery and radiation prevent local recurrence of cancer. For many node negatives, surgery alone removes all the cancer in the body, however there is no way to know for sure. Radiation is done to kill any stray cells left in your breast only. The purpose of radiation and lumpectomy is to save the breast, but if cancer cells have already escaped the breast, radiation will not kill them. In other words, radiation will not save your life.

    Unfortunately, even if you are early stage/node negative, cancer cells may have escaped the breast and be circulating through your system. At this time these cells may be too small to be found on imaging or scans, so one knows if they are there or not. Radiation WILL NOT kill these cells. That's why you will be offered hormone therapy, to remove the fuel that will allow these escaped cells to grow,

    Hormone therapy and chemo are systemic therapies that can prevent a distant recurrence in your bone, brain, liver or lungs (organs bc is likely to spread to). In general, grade 3 tumors respond better to chemo than slower growing grade 1 tumors. Hormone therapy is often the first line of treatment for grade 1 ER+ tumors. If you want to better understand the effectiveness of hormone therapy, read through the stage IV threads and see how many have remained stable or NED (no evidence of disease) for years on hormone therapy alone. Its a powerful little pill. Don't let Dr. Google scare you. Many tolerate it very well.

    Good luck to you.


  • radtk018
    radtk018 Member Posts: 4
    edited July 2015

    Thank you for the replies. I understand the information about stages and grades, radiation and hormone therapy. I've done a good deal of research since my diagnosis. I think I'm having my first real "I can't believe this" moment.

    I felt I was in good hands with the treatment team - nurse care coordinator, surgeon, oncologist, radiologist, etc. BUT, after my lumpectomy I had my first (and only so far) appointment with the oncologist. I had not yet seen my path report from removing the tumor. I was told the results over the phone - stage 1, grade 2, negative sentinel lymph node. I was very pleased, and was on board with radiation to start later in August once healed.

    The problem is, when I went to meet the oncologist, she brought the path report up on the computer because I told her I hadn't seen it. She went through it with me, and I understood everything EXCEPT how could I see in the first two lines of the report Grade 3 and I was being told grade TWO?! That's got me worried. Like, I need to trust my team is on top of everything and how can two people - the nurse coordinator and the oncologist - both read 2 instead of 3????

    Then my mind starts to wonder if the first biopsy was correct or if a mistake was made with the 2nd biopsy. I know I can only make decisions about how to pursue treatment with the facts at hand at the time, and I personally need to know the facts I'm told are correct and TRUE. If I had a grade 3 (fastest growing) tumor and knew that from the first biopsy, I would have chosen a mastectomy. But I didn't know that of course. The first path report clearly states grade two.

    I haven't been scared or worried at all about having invasive ductal breast cancer, but all of a sudden I do feel worried. I'm worried about the attention to details - details that someday in the future could mean life or death and if I get too sick to watch those details, it could be trouble. I've called another local cancer treatment center and they are requesting slides from the tumor and I will get a second opinion just for peace of mind. I'll also meet a new oncologist.

    I don't want to be on hormone pills and I do understand the benefits they can have on preventing future cancer. I'll have to wrestle with this but have time to do that.

    Has anyone else had second opinions and been glad (or not) that they did? Has anyone else turned down hormone treatment?

    I am having the onco test done and results will come sometime the week of August 10th.

    Thank you all. I'm new here and you all are my first people with cancer to speak with. I appreciate your experience and wisdom.

    Amy

    suburb of Minneapolis, Minnesota

    Dx 6/29/2015, IDC, Right, 1.8 cm, Stage IA, Grade 3, 0/1 nodes, ER+/PR+, HER2-Surgery 7/17/2015 Lumpectomy: Right

  • Ridley
    Ridley Member Posts: 634
    edited July 2015

    Amy -- I didn't have your exact experience, but found a couple of times with surgeons/oncologists that they had missed something in the report -- I'm not sure either time it would have made an issue with my treatment decisions, but it did confirm to me that I wanted to get a copy of every report and read it. I have a big green binder with tabs -- and all of my reports are in there. It probably also provided me with some sense of control, when I felt I had none. In any case, that would be my advice to you -- get copies of all your reports.

    Re: second opinions -- I'm a fan -- had my slides read by two pathologists and saw two medical oncologists -- definitely gave me peace of mind when they agreed.

    Also -- personally I found the diagnosis process to be a bit of a roller coaster -- I kept thinking I just needed one more piece of information and then my treatment plan would be set and we could get this show on the road. Unfortunately for me, it didn't turn out that way -- there were many twists in the road. I just say that because, it might have been easier to get through if I had recognized that earlier -- might have been less stressful -- who knows.

    Take care and hang in there.

    Ridley

    PS -- I had a lumpectomy originally and then ended up with mastectomies (one of the twists) , which you could still do -- might be able to avoid radiation that way.

  • hummingbirdlover
    hummingbirdlover Member Posts: 421
    edited July 2015

    Hi Rad,

    My final pathology was upgraded from grade 1 (at biopsy) to grade 3 after surgery. Just like you, I had the oncotype test done and based on that score, chemo was not recommended for me. I was not offered x as an initial treatment plan because I had several small tumors that were spread apart but both my BS and me MO suggested lx before they knew there was more than one tumor. It was my choice to have BMX because only the right side "had" to go. I remember being so upset when they called to tell me it was a grade 3 tumor but the size and biology (based on oncotype) trumped the pathology. Try not to worry and second guess yourself just yet.

  • MANORAMA
    MANORAMA Member Posts: 6
    edited July 2015

    Grade 3 confirms malignancy . Only after the removal of tumour they do biopsy which will let us know the stage of cancer and if it is triple negative or triple positive or double negative and HER2 positive.

  • Leighku
    Leighku Member Posts: 26
    edited July 2015

    I was also told grade 2 from biopsy and grade 3 after mastectomy. I think this is pretty common. Reason given was as mentioned above...biopsy taken from a portion of the tumor that had grade 2 cells. The oncotype test will help you decide on chemo or not as it will give you a recurrence score. Grade is just a portion of a large equation. Please keep in mind that the score given is based on the premise that you will also be doing hormonal therapy. I was told my daily Arimidex (AI) cuts my recurrence score approx in half...chemo then cuts that number down even more.

  • 614
    614 Member Posts: 851
    edited July 2015

    You asked if anyone went for a second opinion.

    I went for a second opinion and I am so much happier with the Medical Oncologist that I have now than the first MO who I visited. I am SO LUCKY that my current MO is my doctor. I also went to more than one Radiologic Oncologist before I decided where to have my radiation treatment.  I know that the radiologic oncologist who ended up treating me definitely did the job correctly and I am SO THANKFUL that I chose him.   

    However, if you go for a second opinion, be prepared for different views, different options, and different choices.  It is very confusing especially happening at a stressful time in your life. Every doctor may have a different outlook.  It is hard to know who is correct.  When faced with entirely different paths of treatment, you must really trust your doctors as well as your own intuition.

    I chose lumpectomy and radiation plus hormone therapy because that is what my current doctor team recommended.  If I went with the other MO/RO, I would have had a double mastectomy, chemo, and a different course of radiation treatments as well as hormone therapy.  (I would have had the same dose of radiation either way.  I had higher dose radiation for less weeks rather than lower dose radiation for more weeks.)

    That being said, EVERYONE recommended hormone therapy because of my ER+/PR+ and HER2- status.  You have to do what is right for you but please consider the possibility of hormone therapy.  Hormone therapy is different than chemotherapy.  Hormone therapy is Tamoxifen or an Aromatase Inhibitor.  You may not have side effects.  Even if you do have side effects, there are other hormone therapy medications which may work better for you. 

    I agree with what everyone else in this thread stated so I will not repeat what they said.

    I did not have a change in grade. I only learned the grade after my surgery when I received my pathology report.  However, my large lump was biopsied and I was told that it was benign.  That was the second time that lump had been biopsied.  Both times, the pathology report stated that the lump was benign although the name of the benign finding changed from the first biopsy to the second biopsy a few years later.  However, after my lumpectomies, the pathology report stated that the "benign" lump had Invasive tubular carcinoma and pleomorphic LCIS all over the lump, in addition to many benign findings.  This is because the diagnosis is based on which cells in the lump that the biopsy removed and tested.  That is the reason why your grade changed from 2 to 3, and my lump changed from benign to malignant.  It is not an incorrect diagnosis.  It is just that the lumpectomy is more reliable than the biopsy.  Your lump must have had both grade 2 and grade 3 cells in it.  However, you must trust your doctor to read the pathology report correctly.  If you don't trust your doctor, then change doctors.

    Good luck.  I will send you positive thoughts and wishes. 

  • 39andhip
    39andhip Member Posts: 164
    edited July 2015

    I had a change in grade from 1 to 2 after my first lumpectomy. I assumed it was based on the additional information that the pathology report provided.

    I am a HUGE proponent of second opinions. I had a really bad experience with an orthopedic condition and only realized a year later I should have gotten a second opinion before surgery from the get-go. With cancer, it is absolutely important to me to be comfortable with and have 100% confidence in all of my doctors. I saw three MOs before deciding on one.

    I have a very strongly positive ER and PR cancer, and am really dreading hormonal therapy. Due to various issues and my age (40), it has actually been suggested that I do ovarian suppression + AI rather than tamoxifen. The former would be the more aggressive route. Of course, I want to do what I can to avoid a recurrence, but I also think you have to weigh chances of recurrence against quality of life. That said, as my MO explained and as others have said, the oncotype assumes that you will do hormone therapy, and means nothing if you choose not to. I don't think there are any data on women who do not do hormone therapy, so that's definitely something I'm taking into consideration.

    Best wishes to you.

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