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I made a BIG mistake and it's too late.

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bigmistake
bigmistake Member Posts: 6
edited April 2021 in Just Diagnosed

There's a long backstory to my diagnosis but I fear this post will be long enough. I hope I'm posting in the right place but I just need to get it out there so bear with me community.

The important bits:

diagnosed w/ ILC on Jan 13 - Surgery March 6 - Pathology rundown: 3cm tumor with 3 out of 7 nodes affected (2 macro 1 micro) hormone + her2 - oh and some DCIS sprinkled in there too GREAT.. not! - Radiation starting next week - Hormone pill after that.

Anyways now my rant and meltdown... after my diagnosis I decided right there and then I was NOT giving cancer ANY space in my life. Nope. I allowed myself to cry once after I was diagnosed and again telling my kids and husband (OH! by the way I'm 48 and have 2 wonderful kids ages 14 and 18 and a husband). I went home, told family and loved ones and made it clear, "I'm not letting cancer have any part of my life!" I never researched other than my basic diagnosis. I didn't want to hear stories, I didn't research support groups, I didn't join Facebook groups or any other forums. I never did any of this because I felt cancer had taken over part of my body and I would not allow it to take over my thoughts. I convinced myself this wasn't going to be a chapter of my life, it was merely a paragraph in my story IF that. I trusted the professionals.

I live in a fairly small town and was treated at a small hospital but I by NO means felt that I wasn't in good hands (until now). Oncologist told me 3cm average tumor I said OK. Oncologist told me lets run this oncotype test to see if you need chemo I said COOL. Test came back 10 "no chemo" said the Oncologist said, I said GREAT!!!. Onto radiation and I considered myself LUCKY. I put said oncotype report in the bag of allll the documents relating to BC I've gotten. Today I got to organizing them and for one reason or another I decided I oughta read more about said oncotype gene test that allowed me to safely skip chemo when from my limited research before I've seen most lymphnode positive patients require chemo.

It was to my SHOCK that I find out this is barely being tested out and implemented for people with positive nodes. This is where the panic and spiraling into an endless searches begins. Can I trust this? Can I even trust my oncologist? I am premenopausal and just ONE google search lands you to studies that say ALL premenopausal women with node positive BC benefit from chemo REGARDLESS of the score. Second, 3cm tumor is more than the average. Third, my oncotype says I have a chance less than 15% of distant metastatic cancer in the next 10 years. One google search away is many studies that say with my tumor size and node status that percent is MUCH higher. Is this test trustworthy for women in my situation? Do top of the line oncologists even use it? Should I barge into my oncologist's office tomorrow and demand an explanation? I really believed all my tests and procedures were top of the line tried and tested industry standard.

At this point plans are set into motion for radiation and I don't have the motivation or even know if its possible to delay things by trying to uproot my whole care into another treatment center. My oncologist never ever made it feel like I had anything to worry about, I would've felt silly asking for chemo from just how much he reassured me my cancer was very treatable with rads and hormone suppressor alone. I haven't even had any scanning yet. All I feel is anger at myself. I'm very very angry that I stupidly didn't research and went along with my team's every recommendation thinking they were up to date and on top of it. I am sorry for my kids because maybe in not doing more and asking for chemo I am taking them away for their mom. I felt safe and on top of it and now I feel anything BUT safe. All I feel like I can do now is lift everything up to god and hope he sees my mistake and gives me a hand at keeping this monster at bay. I hope my kids can forgive me IF I ever happen to become metastatic because I don't think I'll be able to forgive myself.

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Comments

  • johnsmom68
    johnsmom68 Member Posts: 10
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    Hey bigmistake,

    Sorry about your diagnosis. I was exactly your age at diagnosis. My son was 9. Hope this helps.

    The standard of care for my stage was ACT when I was diagnosed. That is a chemo regimen. I had neo adjuvant therapy, so wrong.Turns out all my chemo did was delay my treatment for six months. It did shut down my ovaries so that shrank my primary tumor. It turns out chemo tends to be less effective on er pr positive ILC. My gut told me not to take the chemo but I did because I did as I was told. Had I read even back then I would not have had chemo. It is my big mistake.

    You are different in that you have a mixed diagnosis. It is certainly not too late for a second opinion. I would visit a hospital with an accredited cancer center and get a second opinion immediately. That does not mean your MO has made a mistake. I would always get a second opinion. If he or she is a good MO they won't mind. Dr google is not always our friend. Some countries had stopped treating er pr positive her2- ILC with chemo even when I was diagnosed no matter the stage.

    I haven't updated in my stats but just so you know I had the chemo and radiation and I am metastatic. Right now I am ned.

    All the best to you and for you. All we can ever do is put it in God's hands.



  • WC3
    WC3 Member Posts: 658
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    bigmistake:

    I don't think it is too late to discuss your concerns with your MO or get a second opinion and possibly change your treatment plan.

    This is your life. It is perfectly ok to speak up and be proactive when you have concerns about your treatment.

  • SparkleTBD
    SparkleTBD Member Posts: 10
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    it’s not too late to get a second opinion! If you have any doubts I would meet with your MO to discuss the reasoning behind the recommendation of no chemo. They may have some piece of information you don’t realize. If you don’t get satisfactory answers put off radiation and meet with another MO.

    Check with your RO to be sure but I have a feeling they would support your decision. You AN your team need to be in agreement with your treatment plan.

  • sondraf
    sondraf Member Posts: 1,612
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    Delaying radiation for a week or two to get comfortable about your decision is being proactive about your care. Or you can stew in anxiety over the decision for the next however many years, on top of the anxiety of mets. Frankly I would choose to delay and get a second opinion (or third, if you need a tie break) - two weeks is nothing in the world of BC.

  • summerangel
    summerangel Member Posts: 182
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    I agree, you can get a second opinion. I just want to point out, though, that the Oncotype test is standard for patients with 1-3 positive nodes as well as node-negative patients. You do fit into that category, so it sounds like your doctor was following the standard guidelines.

  • beesie.is.out-of-office
    beesie.is.out-of-office Member Posts: 1,435
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    bigmistake, certainly you should get a second opinion. But, having said that, using the Oncotype test to guide the chemo decision is in fact the current standard of care for those with up to 3 positive nodes. And with a 10 Oncotype score, chemo would rarely if ever be recommended. The question I have is whether your Medical Oncologist has recommended Tamoxifen, or has suggested ovarian suppression plus an Aromatase Inhibitor.

    Here is a screen shot of the current NCCN Treatment Guidelines for a pre-menopausal patient with your diagnosis (T2/N1/M0). These guidelines are the gold standard, and are followed by most MOs in North America. The footnotes in red are crucial.

    image

  • beesie.is.out-of-office
    beesie.is.out-of-office Member Posts: 1,435
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    Do you have a copy of your actual Oncotype report? By coincidence, the 'sample' version of the report that is posted on the Oncotype website has a 10 score, so it should be the same as your report, unless the reports have been updated since this was posted on the Oncotype site. Here are the two pages from the report.

    What is significant is that for a 10 Oncotype score, there is no apparent benefit to chemo. In fact, if you look at the graph on the second page, within the SWOG study, those with a 10 score who had chemo actually fared worse than those who did not have chemo. And this is the unfortunate dilemma. With your diagnosis, you do face a 12% risk of metastatic recurrence at 9 years. But because chemo is only partially effective and because it comes with it's own risks and side effects (a small percent of which can be extremely serious), studies have found that chemo does not reduce the overall risk.

    One thing to keep in mind when you look at this information is that this data was developed based on pre-menopausal patients taking Tamoxifen. Since this study was done, other studies have come out that show that pre-menopausal patients are able to reduce their risk if they have OS (ovarian suppression) and take an AI (Aromatase Inhibitor) rather than simply going on Tamoxifen.

    Of course all of this information is generalized, and you need to speak to an Oncologist about your specific situation and concerns.

    image

    image

    A side note: The DCIS found with your ILC is irrelevant to your diagnosis and treatment. DCIS is a pre-invasive condition. Many invasive breast cancers develop from DCIS, so it is very common to find DCIS mixed in with IDC and ILC - in fact that I believe that happens in about 80% of diagnoses. The DCIS needs to be surgically removed but otherwise can be ignored because it is the lesser condition, and anything done to treat the invasive cancer will be more than sufficient to address the DCIS.

    I hope you are able to get a second opinion and come up with a treatment plan that you are comfortable with, whatever you decide.

    Please let us know what you decide to do. And I'd recommend that you check around the board. There are lots of premenopausal women here with similar node positive diagnoses, some of whom have decided to have chemo (although usually with intermediate Oncotype scores, not low scores) and some of whom have decided on OS + an AI. If you do a search on the discussion board of the words "Ovarian Suppression" I'm sure you'll find others who had to make the same decision as you.


  • lillyishere
    lillyishere Member Posts: 773
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    bigmistake, as a fellow ILC with 2 out of 5 nodes positive, I had 4 opinions on the treatments and they all said, no chemo, surgery+OS+AI. First of all, ILC doesn't respond well to chemo but it supposed to respond to AI (aromatase inhibitor). You had some great suggestions in this thread for you to go for a second opinion on a well-known cancer center. Cancer is a serious disease and you want to get the best treatment plan you can get. I have only one suggestion, to remove all breast tissue since ILC tends to spread in both breasts and most of the time doesn't show on scans. However, this is a very personal decision that you will make. My kids are 13 and 17 right now and I know how difficult it is to deal with teenagers, work and cancer treatments at the same time :).

  • lillyishere
    lillyishere Member Posts: 773
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    johnsmom68, when and how did you learn you are metastatic? If you don't mind to ask, what treatments are you getting?

  • mainejen
    mainejen Member Posts: 148
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    I would definitely get a second opinion. I was just diagnosed a couple of weeks ago with similar info (3.5 cm and so on). Surgery next week. My oncologist wants to wait for the info about the oncotype before committing to chemo. But he also said that if 1-3 nodes are involved, he's likely going to rec chemo regardless of oncotype. I'm 52. Very healthy otherwise. He said (and I fully agree) - I'm young and healthy enough that going aggressive is a good move. I'm of the mind that, unless there is a GOOD, solid reason NOT to do the chemo, I'm doing it because I want to blast this crap out of my body. I know you want to get it all done. I do too. I can't figure out why these things don't happen faster when cancer is inside of someone's body. Makes me crazy. But if I were in your shoes, I'd get another opinion for sure. For sure. It's worth the trouble. If the 2nd opinion says no chemo then won't you feel less worried? For peace of mind, I'd go for it and find another person to tell me their thoughts. Sending loads of positive energy your way (I don't have much positive right now, but I'll find it In there for you).

  • alicebastable
    alicebastable Member Posts: 1,945
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    MaineJen, the Oncotype test IS the "good, solid reason."

  • bigmistake
    bigmistake Member Posts: 6
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    WOW ladies! Thank you for your encouraging words of wisdom and advice they have helped me tremendously. I really was just spiraling all day yesterday. Today I feel so much better now that I’ve let it all out and am grateful for every response. Unfortunately I don’t live near a big cancer center, remote consultations would cost me money I just don’t have at the moment. I guess my only option would be to try someone local. I also don’t yet know if I’ll be taking tamoxifen or if I will be taking an AI, but I’ll take whichever gives me best odds. I have to stress how grateful I am for every response. I wasn’t expecting such a warm welcome and was just in desperate need of someone to vent to and someone who knew what I was going through. 💕

  • mainejen
    mainejen Member Posts: 148
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    AliceBastable, isn't it true, though, that if the nodes are involved, that is also a good, solid reason for chemo - even without the oncotype? I'm brand new at this, but that is the impression I am under based on my conversations with doctors recently. Am I wrong?

  • beesie.is.out-of-office
    beesie.is.out-of-office Member Posts: 1,435
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    bigmistake, I'm glad you are feeling better about things today. One note about endocrine therapy (anti-hormone therapy). AIs cannot be given to patients who are pre-menopausal. So if you are still pre-menopausal and want to take an AI, you will either have to go on ovarian suppression meds (Lupron or Zoladex, I believe) or have your ovaries surgically removed (an OOPH).

    MaineJen, the chart that I posted above details current treatment guidelines for pre-menopausal node positive patients. Below is the chart for post-menopausal node positive patients. These guidelines have been established by a board of leading breast cancer specialists, are based on the latest research available, and are updated regularly. So to your question to AliceBastable, looking at both charts, you can see that for node positive patients, rather than automatically assume that chemo should be given, the preferred option is the Oncotype test (21-gene RT-PCR assay), with the decision on chemo to be made based on the Oncotype score.

    image



  • mainejen
    mainejen Member Posts: 148
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    Thank you for this! I appreciate you explaining it!

  • johnsmom68
    johnsmom68 Member Posts: 10
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    Hi lilyishere, I was diagnosed metastatic December 23, 2019. Six years to the day from my original diagnosis. I had very bad digestive issues. My cancer metastasized to my peritoneum,femurs, other bones. I am on faslodex injections and Ibrance.


  • lillyishere
    lillyishere Member Posts: 773
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    bigmistake, when you'll get a second opinion, ask if OS+AI would be better than tamoxifen for you since you have ILC that responds better to AI. As soon as you have a good plan, you'll feel better.

    johnsmom68, if you don't mind me asking, did you have radiation after lumpectomy? Also, what made you change from Aromasin to Femara? I am told ILC is a very slow-growing cancer, I wonder if Aromasin and Femara were helpful for you.


  • kathabus
    kathabus Member Posts: 45
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    Lots of great input above. Just wanted to share that I had a positive node (8mm) and still was not recommended chemo with an Oncotype of 10. OS plus AI for me. In fact, since I wasn't doing chemo, I just went straight to the oopher/hyster. Personal decision, but the right one for me.

    Could I have gotten an opinion for chemo? Absolutely. I knew that. I listened to the treatment and the reasoning, and I was comfortable with it.

    You may want to research the SOFT Trial. It's a trial that showed premenopausal women benefit more in higher risk situations with OS plus and AI vs Tamoxifen. It might not help you with the chemo part, but it might help you to understand the huge benefit menopause and AI has on premenopausal women in our situations.

  • salamandra
    salamandra Member Posts: 745
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    Just wanted to suggest that you speak with your insurance company - they might well cover the costs of a remote consultation. My insurance company actually reached out to me with a letter telling me they would pay for a second opinion. Their letter was way too late, but I think that cancer can be so expensive to treat that insurances are willing to pay more up front to get the right treatment.

  • bigmistake
    bigmistake Member Posts: 6
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    I love all input , will try to get in contact with my insurance and see what they say. I’m so glad there’s other people here in my situation also. It’s reassuring because for a second I felt like a guinea pig!

    I did mention that I never had any scans either, I was just told “bone density scan will be done before you start your hormone suppressors” but I’ve never had a PET, CT, or MRI. Ive only ever had ultrasounds and an x ray of my lungs before surgery. This frightens me. Maybe I’ll make another post about it. Has anyone not had body scans before or after surgery? How do they know it isn’t somewhere already in my body? I’ve felt some changes in myself lately but I attributed them to approaching menopause

  • kathabus
    kathabus Member Posts: 45
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    I requested a PET scan because I wanted to make sure if I was skipping chemo with a positive node.....we weren't missing anything. I thought that was fair. I couldn't get a PET due to insurance, but I did get a CT scan and bone scan (different from a bone density scan). These two scans kind of tell you what a PET scan would....just a different way of getting the info.

    With that being said, the scans picked up a lesion in my bone that they thought may have been mets. I had to get a bone biopsy. It was benign, but just saying...sometimes with these scans they will pick up things that you will have to deal with that can cause much, much stress. But in the end, I was glad I had the peace of mind.

    EDIT: Absolutely scanning is not part of the guidelines for early stage. And asking for the scans was the only thing I did outside of the guidelines. Why? Because the guidelines also say don't go back for more nodes. So I had no idea if I had 1 positive node....or 5. So if I was skipping chemo, I wanted to make sure the treatment I was deciding on was the right one. It turned out it was. If I didn't have positive nodes....or I was doing chemo....I would have followed course.

  • beesie.is.out-of-office
    beesie.is.out-of-office Member Posts: 1,435
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    I certainly understand the desire for scans, and whether someone gets them really seems to depend on the surgeon and MO - some order lots of scans and others order nothing. Not having any scans seems to be more common and is actually consistent with the NCCN treatment guidelines:

    image

  • mountainmia
    mountainmia Member Posts: 857
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    My care was at a comprehensive cancer center. I didn't have any scans beyond mammogram and ultrasound for diagnosis. There was a chest CT prior to my radiation, for the sake of mapping the treatment correctly. No MRI, no bone scans, no full-body CT. This is the standard of care.

  • NoBananas
    NoBananas Member Posts: 25
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    Bigmistake, My first cancer, 18 yrs ago, I did not have any scans, prior to or after my treatment. Only ultrasounds, mammograms, no pet scans etc. Itwasn’t a done thing back then.

  • johnsmom68
    johnsmom68 Member Posts: 10
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    Hi lilyishere,

    I did have radiation. I switched AI's to find one better tolerated.

    My KI-67 was 40%. Not 100% like my young cousin's triple negative IDC but not really slow growing either.

    There are characteristics that are common to ILC. Often it is a slower growing cancer that affects elderly women. There are exceptions.

    Bigmistake,

    Lots of sage advice here. The study kathabus mentioned sounds very worthwhile. I agree with Beesie not scanning is common in my experience. I understand ILC shows up better on MRI.

    I would ask if your hospital has a nurse navigator.

    Best wishes everyone.




  • 1greekmomma
    1greekmomma Member Posts: 6
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    Johnsmom68,

    May I ask why you regret the chemo? I am currently doing neo adjuvant chemo but have just finished the AC portion. Am very hesitant about continuing because I have not had any testing of my primary tumor done yet (they biopsied the lymph node, ER+ 95%, PR+ 19%, Her2 neg (+1) IHC. No grade, no ki67, nothing. CA 15.3 levels at 12. PET and bone scan show no sign of metastasis.

    I suspect I have ILC based on the fact that my breast lump did not show up on neither mammo or US (2.6cm x 1.6cm on MRI), and that scans done on my lymph node in Sep 2020 and Jan 2021 show no size increase, so I would think if it was a fast growing cancer, that should have changed.

    I also have not read good things about taxanes, and there have been studies (albeit in mice but tissue samples from breast cancer patients were also sampled) that suggest that taxanes may actually promote metastasis. Another article I found suggests a connection between taxanes and increased brain mets, so now I am really hesitant! Oncologist obviously says I need the taxane to make sure all the cells are killed, but as I see in your instance, metastasis happened regardless of you doing everything "by the book" (and you are not the only one. No guarantees with cancer, right?)

    So glad to hear you are currently NED. I pray that you stay that way!


  • bigmistake
    bigmistake Member Posts: 6
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    Hello girls.. well no good news here I guess I’m stuck in my situation. I’m to start radiation and no oncologists near me are taking appointments in the near future (this week). Which is all I have left before radiation. Insurance won’t pay for a second opinion remotely unless I have a “valid issue” with my current team. has anyone gotten Chemotherapy after radiation?

  • 2019whatayear
    2019whatayear Member Posts: 468
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    1GreekMomma, Your biospy report should clearly stat if you have lobular or ductal breast cancer, its not something you'd need to surmise. It can be seen on the slides they review for all biopsies.

  • 1greekmomma
    1greekmomma Member Posts: 6
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    Hey 2019whatayear,

    I promise you it is not on there. What I posted is what is in my electronic record. I just assumed that maybe the lymph node biopsy wouldn't be as detailed, I have no idea. I just know hormone status and tumor size. Not even staged (Onc says maybe 2B or 3A depending on number of nodes which PET and MRI suggest multiple).

    I guess I just have to ask and find out what is going on. I have no idea why I didn't even get a grade at the very least. If it does turn out to be a grade 1 or 2 ILC, I will probably stop chemo at the AC. From what I have read, that is the "heavy hitter" anyway, and that some studies show that taxanes don't really add that much benefit to ER+, Her2- cancers (anywhere from 1-5% additional DFS/OS). The NP has tried to discourage me from radiation, so I guess their plan was for me to do the chemo, get a bi-mastectomy and then on my way.

    It's a gamble no matter what I do.

  • bigmistake
    bigmistake Member Posts: 6
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    greekmomma did they biopsy your breast too or just your nodes. I do think the grade is very important. If you do end up having ILC it is also important that you know the type bc there’s subtypes like Pleomorphic which tends to be more aggressive