Questioning my doctor, second opinion?

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Monasmadali
Monasmadali Member Posts: 5
edited October 2021 in LCIS (Lobular Carcinoma In Situ)

Hi all,

I was diagnosed with LCIS and sclerosing adenosis in Nov 2020. I saw a surgeon thinking I had cancer and needed a lumpsectomy to find out I didn't.

This surgeon wants me to only go to her radiology centers for follow up mammogram in May and to also get a breast MRI. She also wants me to take meds to prevent getting cancer since my mom had it (stage1) when she was 29. She had referred me to a medical oncologist.

I have been thinking and something doesn't sit me with right here.

1) My mom had the BRCA tests done and they were all negative, so why do I need to even follow up with a oncologist and take these meds? I feel like the meds should be like an option if I actually have cancer and to prevent it after that from recurring. I am against these meds because I have high blood pressure and anxiety and the side effects are blood clots which I already have those side effects with the high blood pressure, plus to pretty much go right into menopause instead of going there naturally (I am perimenapause) wouldn't be great for my anxiety.

2) why does this doctor insist that I only go to her preferred radiology place to get mammograms that are out of the way? I rather go where I want to go.

3) this doctor is fairly new and doesn't have that much experience and no online reviews. I think I need to go to someone with more experience and the medical oncologist that she is referring me to also graduated the same year with also no online reviews. I don't want to be seeing someone just because they know each other and graduated together and maybe he will have a biased opinion of agreeing with everything she says.

4) I don't understand why I have to get a breast MRI the same time as a follow up mammo, it's not like she told me to get the mammo first, look at it then decide based on what she sees. The breast MRi is really expensive and it would be more affordable towards the end of the year when I meet my deductible. My mom thinks it makes more sense to scatter these things instead of having them at the same exact time, so maybe instead have it in August.

i would really rather instead do what I always do, get a follow up mammo with an ultrasound since my breasts are dense but the doctor doesn't want me to get an ultrasound with the mammo.

i thought about getting a second opinion, finding a doctor with more experience and a medical oncologist that is not in the same circle as the surgeon itself.

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  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited March 2021

    Your doctor is correct.

    https://www.mayoclinic.org/diseases-conditions/lobular-carcinoma-in-situ/diagnosis-treatment/drc-20374535


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  • flashlight
    flashlight Member Posts: 698
    edited March 2021

    Hi Monasmadali, Did you go to a breast surgeon? I agree you need a second opinion with another breast surgeon at a cancer center. Is the thought behind sending you to another facility for a mammogram because they might have newer 3D imaging? I would think you would have a biopsy first before a MRI. The MRI would be able to pick up some small lesions especially since you have dense breast. The doctor might be trying to rule this out. Is the area of LCIS pretty clear where they can get a biopsy? Do you know of anyone in your area that could make a recommendation for a medical oncologist or surgeon?

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  • Monasmadali
    Monasmadali Member Posts: 5
    edited March 2021

    I saw a breast surgeon because my Obgyn told me I had cancer after I had the biopsy, just to find out later that it was not cancer exactly. The surgeon initially told me that she rather I go to her radiologist because she knows him.

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  • Beesie
    Beesie Member Posts: 12,240
    edited March 2021

    Monasmadali,

    I'm thinking the surgeon wants you to go to her screening center so that she has quick and immediate access to the results. But I agree that you should be able to go wherever you want.

    As for the rest, it sounds as though this surgeon is on the ball and being very conscientious about your health.

    I don't have LCIS but to my understanding, while LCIS is a high risk condition and not breast cancer, with LCIS the risk that you will develop breast cancer is in the range of 25% - 40%.

    Additionally, since your mother was diagnosed at such a young age, this too increases your risk. Was she only tested for the BRCA mutations? These days most genetic testing for breast cancer includes 'full panel' testing, which includes anywhere from 20 - 30 different genes that all are known to increase breast cancer risk. And even testing negative doesn't mean that there is no genetic connection - it simply could mean that the particular genetic mutation that caused the cancer has not been discovered yet.

    That said, most breast cancers are not caused by genetic mutations - only about 15% are. But you might have inherited from your mother other biological factors that increase your risk, such as high breast density or high estrogen levels.

    All in all, with LCIS, dense breasts and your mother's cancer at such a young age, you are high risk to develop breast cancer. Taking meds (endocrine therapy, also called anti-hormone therapy) can reduce your risk by 50% or more. So if your risk is 32% (I pulled that out of the air; it's about midway between the 25% risk and 40% risk conferred by LCIS), taking anti-hormone therapy can reduce your risk to 16%. But of course it's totally optional and it's your decision to take it or not.

    As for the MRI, it's great that this is being recommended. With dense breasts, mammograms are not the most effective. A second screening modality is recommended. Usually that's an ultrasound but an MRI is definitely preferred and is considered the most effective for those with dense breasts. LCIS, which most often can't be seen at all on a mammogram, can develop into either IDC (invasive ductal carcinoma) or ILC (invasive lobular carcinoma). ILC in particular is often not seen on mammograms and is visualized best on MRIs. A lot of high risk patients and patients with dense breasts have to fight to get their doctors to order an MRI, so it's good that your doctor is on top of this and being pro-active. The timing... that seems to be a preference thing. Some docs prefer that the mammo and MRI be done at the same time, while other docs prefer that they be staggered 6 months apart. This is something you can discuss with the MO.

    Lastly, one thing to consider is that if you develop breast cancer, even if it is caught early, that doesn't mean that it might not be a very serious cancer. It all depends on the biology of the cancer, and there is no way to predict that. Even tiny breast cancers that are hormone negative or HER2+ require chemo. Even early stage cancers can spread and become metastatic. It's a matter of personal choice, and you have to decide what's best for you based on your level of risk tolerance, but there certainly is value in avoiding a diagnosis of breast cancer rather than having to deal with it when it comes.

    Edited to add: Glad to hear that it was the OBGYN who thought that LCIS was cancer, and not this surgeon. OBGYN's expertise is below the belt and while some are very familiar with breast issues (non-pregnancy/breastfeeding), others are pretty clueless. Sounds like yours was pretty clueless.



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  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited March 2021

    You have a high risk condition, not cancer. As a matter of fact, lobular neoplasm is a newer preferred term, since it eliminates the confusion about lobular “cancer” in situ. LCIS is not the lobular equivalent of DCIS and is not treated the same. However, since your mom had cancer and you have LCIS, identifiable gene mutation or not, you are likely at significant risk of developing invasive cancer. The recommendations as to surgery or not have been changing recently. The MRI is a good recommendation because LCIS tends to be only an incidental finding on biopsy and not seen on mammography or ultrasound. LCIS tends to be diffuse and often bilateral, so “cutting it out” is not a reasonable goal. I told my doctor on my last biopsy she didn’t have permission to find any more LCIS because we both know it is probably good odds that wherever she sticks a needle she might find more and we both laughed. MRI is your best bet at seeing where things actually stand

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  • Monasmadali
    Monasmadali Member Posts: 5
    edited March 2021

    thank you all for the feedback

    I made an appt with another doctor who is more experienced for a second opinion and also with a medical oncologist that is not in the same circle. Maybe that will make me feel better.

    My mom had the entire array of genetic tests done and all were negative and she never had a recurrence in over 40 years.

    I am still concerned about the meds and how it affects blood pressure for those who already have high blood pressure not to mention the menopausal like symptoms.

    Anyone take these meds during perimenopaus?

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  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited March 2021

    monasmadali,

    On the issue of genetic testing, did your mom have her genetic tests done 40 years ago? If so, there are a slew of genes, over 30, that are being for genes that had not been discovered 40 years ago. I was dx’ed almost 10 years ago at which time BRCA testing was pretty much it. However, a few years later the expanded testing panels became available and I have now been tested for 30+ genes. Lastly, even if you do have the complete genetic panel (mine was the Ambry panel) remember that only about 15% test positive for known mutations.


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  • Monasmadali
    Monasmadali Member Posts: 5
    edited March 2021

    My mom had her genetic testing done in Jan 2021 because my surgeon requested it. It was the myriad myrisk test that also tested for colon and ovarian

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  • Beesie
    Beesie Member Posts: 12,240
    edited March 2021

    Good that your mother's genetic testing was a full panel and was so recent.

    When genetic testing finds a positive mutation, that is a definitive result. When genetic testing doesn't find anything but there is a history of cancer, that's considered an "uninformative negative", meaning that it doesn't really answer the question as to whether there is a genetic cause or not because the test was only done to check against what we currently know. Within genetics, there remains much more that we don't know.

    As for your mother never having a recurrence, that's not related to whether there might be a genetic component to her cancer. That is simply related to the subtype of cancer she had, how early it was found, and how it was treated. And while that's great news for your mother, it has no bearing on what your diagnosis might be or the stage at which it might be caught, if you were to be diagnosed.

    I trust that your mother never developed any other types of cancer? What about other members of the family? That, rather than recurrence, would be more likely to indicate whether her cancer might have been genetic or not. Did your mother see a genetic counsellor?

    One comment about experience. Sometimes a doctor with more experience is a better choice because they know more because of all their years of experience. But sometimes a doctor with more experience is stuck in the past and is not aware of or approving of more recent advancements. Similarly, sometimes a doctor who is new (keeping in mind the number of years of specialization it takes to work in an independent practice) may go too much 'by the book' without being able to factor in real patient experiences, but other times a newer doctor is better precisely because they are not stuck in the past and understand the latest advancements. In your situation, the fact that the surgeon asked that your mother get genetic testing, and the fact that she is recommending MRIs, are both huge positives in her favor, even if you aren't keen on having the MRIs (and it's your choice to have them or not). It's important that you go to the doctor you are most comfortable with, but from having spent years on this site, I wanted to offer that perspective.

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  • flashlight
    flashlight Member Posts: 698
    edited March 2021

    Monasmadali , It sounds like you have a start to a plan and that is a great place to start. I hope you get an answer to all of your questions with your new team of doctors. You need to feel comfortable and have an understanding with the team that is giving you guidance. Best wishes.

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  • Monasmadali
    Monasmadali Member Posts: 5
    edited March 2021

    my mom didn’t have any other incidence with cancer (any type) and what she had was stage 1 an non invasive.


    I agree that a doctor with loads of experience might get stuck in the past as opposed to a newer doctor going by the book and lacking patient experience. I guess that proves even more that it is good to get another opinion.

    I don’t mind getting the mri (as long as it comes with the vallium) I just wish it wasn’t so expensive and she would do this at the end of the year. With Covid my husband is on half salary.

    Unless these doctors have a really good argument otherwise I think o might present getting the follow up mammo/ ultrasound in May and have the mri later in August.

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  • Beesie
    Beesie Member Posts: 12,240
    edited March 2021

    For years I had mammos and MRIs alternating every 6 months. That's a very reasonable approach. Your surgeon stated her preference to have both tests done at the same time but one or both of the MOs might prefer the 6 month alternating option. It's commonly done that way.

    Good luck with the second opinion. Let us know how it goes.



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  • Dixons25111
    Dixons25111 Member Posts: 1
    edited October 2021

    Okay, so I was diagnosed with DCIS in Oct 2020 (following a mammo and biopsy), at 60. Had lumpectomy in late Oct 2020.

    Referred to radiology oncologist for recommended radiation. Didn’t feel right about it (nothing in margins, etc), wanted more answers. Dr recommended more extensive testing on biopsy sample. Sent out.

    Waited more than 6 weeks for results. Finally given results. Decided to not do radiation. Still didn’t feel right.

    60 days later, received a call from surgeon’s office. The further testing actually showed it was not DCIS but instead LCIS. That part of the result was missed by my doctors who reviewed the latter report. The surgeon’s NP found it after my (late) 3 month folllow up.

    Told my estimated risk for invasive breast cancer, in either breast, is now 67%. I’m beyond confused. . .

    Cancer (no stage). Not cancer, but higher risk. LCIS rarely progresses to invasive. Blah, blah, blah. I’d rather hear it from real people.

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  • leaf
    leaf Member Posts: 8,188
    edited October 2021

    LCIS does put you at higher risk than the average woman for breast cancer. But much about LCIS is not known. You were given a estimated risk of invasive breast cancer in either breast is 67%. I would take that with a grain of salt. If you 'only' have LCIS, and nothing worse (in other words, no DCIS or invasive breast cancer), with no other risk or mitigating factors (such as strong family history, or taking anti-hormonals), then probably less than half of the LCIS women go on to get DCIS or invasive breast cancer. But they do not know the number well because LCIS is very difficult to study. One of the main reasons why LCIS is difficult to study is that often it does NOT show up in imaging, and the only sure way you can diagnose it is to look at a piece of tissue under the microscope. This, of course, disturbs the area, can cause scar tissue (making it harder to see abnormalities in imaging) and makes it very difficult to follow LCIS spots in a breast. Women with LCIS often have multiple spots of LCIS in a breast, and often in both breasts.

    Yes, LCIS does put both breasts at risk. They know that because some 30 years ago they used to routinely do bilateral prophylactic mastectomies for LCIS, and they could look at the mastectomy specimens.

    LCIS can be difficult to diagnose. I would try to get a copy of your pathology report to make sure you don't have both DCIS and LCIS. There are also different types of LCIS, some of which may be at higher risk than others. 'Classic' is the most common type of LCIS, which is thought to be of lower risk than some others that are more unusual.

    As far as I know, they don't know why or how LCIS puts a person at higher risk for future DCIS or invasive breast cancer, sometimes at a place that looked totally normal under imaging.

    But again, ignoring other factors, probably less than half of women with classic LCIS go on in the future to get DCIS or invasive breast cancer. Even if you have other risk factors, such as a strong family history with lots of first-degree relatives (parent, siblings,offspring) with breast cancer, we don't know for sure if these risk factors add extra risk to LCIS because they haven't done the studies (as far as I know.)


    Best wishes,

    leaf

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