Recently Diagnosed and want some input.

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Kel25
Kel25 Member Posts: 25
edited May 2020 in Just Diagnosed

I was recently diagnosed and would like some help understanding my reports. Does the pathology report mean that it is two types of cancer (IDC and DCIS)? I would also like to hear from someone that has a similar diagnosis and what surgery you received as well as treatment options, and why? My pathology report reads as follows:

Right breast mass, needle core biopsies:

--Invasive low-grade ductal carcinoma.

--Neoplastic focus microscopic in nature measuring 1 mm.

--Focal DCIS, solid type nuclear grade 2.

--Stromal fibrosis.

ER/PgR + and HER2-


My Breast MRI report reads as follows:

Findings consistent with multicentric right breast cancer, which is demonstrated as regional mass and non-mass enhancement predominantly throughout the inner breast spanning 7.3 x 4.6 x 6.7 cm, which is more extensive than is identified
mammographically or sonographically. No evidence of contralateral disease or lymphadenopathy.

Thank you to anyone that responds.

Comments

  • ctmbsikia
    ctmbsikia Member Posts: 1,095
    edited April 2020

    Kel, hi so sorry you are here. I am no expert but wanted you to know there is also a DCIS section that has tons of information. I think what the pathology is saying is that it is DCIS with microscopic 1mm that is invasive. So no, it is not 2 different types of cancer.

    I also have DCIS which would have probably been identified if I had a mammogram before the age of 56! By that time, I had an invasive tumor.

    Confident your prognosis will be good, but after surgery (also a whole section here on that) whatever you choose, once you get the final surgerical pathology the oncologist will make a plan and you should feel much better. Good luck, let us know how you're doing.

  • Moderators
    Moderators Member Posts: 25,912
    edited April 2020

    We too are sorry you find yourself here, but glad you found our community. Sounds like you'll indeed want to read about both Ductal Carcinoma In Situ (DCIS) as well as Invasive Ductal Carcinoma (IDC). When do you meet with your doctor for clarity?

  • Kel25
    Kel25 Member Posts: 25
    edited April 2020

    Thanks for responding.

    I hope you are doing well with all that is going on right now.

    I have already had genetic testing, no mutations. I am currently waiting on Oncotype results. Surgical oncologist and medical oncologist both say without Oncotype score they cannot say for sure what surgeries or treatments i would need.

    So for now, just waiting for results, just wanted some input from someone that may have had or has a similar pathology report.

    I have had mammograms for the past 10 years, I am now 45, glad it was caught.

  • Beesie
    Beesie Member Posts: 12,240
    edited April 2020

    Most IDC develops from DCIS so it is extremely common to have DCIS and IDC together - DCIS is found in something like 80% of cases where someone has IDC. Since IDC is the more serious condition, staging, treatment and prognosis is always based on the IDC - the DCIS needs to be surgically removed but can otherwise be ignored. Any treatment done for the IDC is more than sufficient for the DCIS.

    From the description, it sounds as though your biopsy found microscopic IDC (1mm) along with a small area ("focal") of DCIS. This could be a diagnosis of DCIS-mi, which is DCIS with a microinvasion. However the write-up is more suggestive of a diagnosis of IDC. And the fact that your tissue has been sent for an Oncotype test is confusing. Are you sure it's the Oncotype test that is outstanding? There are two Oncotype tests, one for DCIS and one for IDC. The DCIS Oncotype should not be used if there is any invasive cancer present, even just a 1mm microinvasion. The IDC Oncotype is not usually used on IDC that is smaller than 5mm, and certainly the test could not be done on an IDC biopsy sample that is only 1mm in size. So the dots aren't connecting here.

    I would advise caution in reading the DCIS information on this website. It is written for those who have a pure Stage 0 DCIS diagnosis, with no IDC present. That is not your situation. The DCIS section is somewhat relevant to those who have DCIS-mi; although DCIS-mi is a Stage I diagnosis, it in effect falls in between a DCIS diagnosis and an IDC diagnosis. But of you have more IDC than a microinvasion and your diagnosis is Stage I (or higher) IDC, then the DCIS information is not relevant to you and in fact could be misleading because your testing and treatment plan will be based on the IDC.

    How did your surgeon and MO describe your diagnosis? Did they talk about it as being invasive cancer or did they focus more on the DCIS (which would indicate the possibility of a DCIS-mi diagnosis)?




  • Kel25
    Kel25 Member Posts: 25
    edited April 2020

    Beesie,.

    Thank you for being so thorough in your explanation of what could be going on based on the reports. Unfortunately, I don't remember what was said by the surgical oncologist during our first meeting. The thing that I do remember is when he called to give me the MRI results, he said the mammogram and ultrasound showed the mass being 2 cm (mammo) and 4 cm (ultrasound). He went on to say however, the MRI is showing 7.3 cm. He then went on to say that I may need chemo before surgery to shrink the mass and that he would order the oncotype test.

    I met with the Medical Oncologist yesterday and she only spoke mainly about radiation and the two hormonal treatments after surgery that I would need. She did say that she would be surprised if I have a high Oncotype score. I am 45 years old and have a strong family history of breast cancer as well as other cancers. i don't have any genetic mutations. I don't know if my age and family history had any influence on ordering the oncotype, just thought I would mention it, in case they are relevant. I am so confused at this point and don't know what to think of the reports.

    Thank you for your valuable knowledge. I appreciate it.


  • OnlyGirlof5
    OnlyGirlof5 Member Posts: 78
    edited April 2020

    Hi Kel25,

    I had both ICD and DCIS. As Beesie mentioned, DCIS often progresses into ICD. In my case, I had 2 tumors found in USN and biopsied. Both with their own type, hormone receptor status and grade in my pathology report. After surgery, They found a 3rd tumor that was also ICD. They also upgraded the stage of the largest tumor from a 1 to 2, as it had grown.

    I didn't realize they did oncotype scores prior to and to determine surgery type. My oncotype was done after surgery to determine if I should have chemo. However, the surgery type for me was never really discussed much further after the consult. Due to the location and size of the tumors, I wasn't a candidate for a lumpectomy anyway.


  • Beesie
    Beesie Member Posts: 12,240
    edited April 2020

    Kel, age and family history don't impact the Oncotype score. The score is developed based on a biological analysis of the genetic make-up of the cancer cells. There are 21 genes within the tumor that are evaluated; the best known are ER, PR, HER2 and Ki-67.

    It appears that your team is assuming that you have more IDC than just a microinvasion, otherwise chemo wouldn't even be discussed. If you have an Oncotype score that suggests that chemo would be beneficial, then your surgeon is recommending chemo prior to surgery to shrink the tumor - this is only done with IDC and never with DCIS-mi or pure DCIS. So that does help clarify your diagnosis, to some extent.

    Onlygirl, in most cases the Oncotype is done after surgery, not after a biopsy. I think this is mostly because the amount of tumor retrieved from a core needle biopsy is usually too small to send for Oncotype testing. I don't understand in Kel's case, if so far only a 1mm invasive tumor has been removed (during the biopsy) how that could be large enough. Perhaps the sentence "Neoplastic focus microscopic in nature measuring 1 mm" is referring to something additional to the IDC and the amount of "Invasive low-grade ductal carcinoma" retrieved is larger, and large enough to submit for Oncotype testing. Another reason why Oncotype testing usually isn't done until after surgery is because the surgery might reveal that the Oncotype test isn't necessary, either because the final size of the tumor is so small and so favorable that chemo would not considered, or because the tumor is so large and/or nodal involvement so extensive that chemo is deemed to be critically necessary. One additional comment. In your case while it's possible that the tumor grew between the biopsy and the surgery, thereby driving a change in your Stage from Stage I to Stage II, what is more common is that the full size of the tumor was not visible on imaging, just as in your case the 3rd area of cancer was not visible. It's not unusual at all for the tumor size after surgery to differ from what was estimated from the imaging. This doesn't mean that the tumor has grown (breast cancer is a relatively slow growing cancer, with some exceptions) but reflects the inadequacies and inaccuracies of current breast imaging.


  • Kel25
    Kel25 Member Posts: 25
    edited April 2020

    Thanks to both of you for shedding some light on possibly what the report means. I read over the pathology report and it does say that 4 samples were taken, don't know if that is standard, or they took more samples for a special reason. I am suppose to have the Oncotype by Friday, 4/1/0 or Monday, 4/13.

    Why is chemo never used to shrink a tumor that is DCIS-mi or pure DCIS? Also, why wouldn't a surgeon just remove a IDC tumor, instead of trying to shrink it first? Wouldn't waiting be putting the person at risk of the cancer spreading?


    Thank you.

  • Beesie
    Beesie Member Posts: 12,240
    edited April 2020

    Most core needle biopsies take many samples - 4 isn't a lot, actually.

    Chemo is a systemic treatment - it goes into the whole body - and is used primarily to reduce the risk of distant metastasis. It also can shrink a tumor in the breast, but that's a secondary benefit; chemo is never given solely for this purpose - surgery and radiation are the primary "localized" treatments. DCIS is a non-invasive condition, which means that it does not spread beyond the breast. Therefore chemo is never given for pure DCIS. There is no reason to give such a harsh systemic treatment for a localized disease. With DCIS-Mi, the diagnosis is usually a larger area of DCIS along with one or several 1mm microinvasions. 1mm is the size of the head of a pin (maybe smaller, actually) so the risk of metastasis from an invasive cancer this small is usually tiny - maybe 1%. This is not a high enough risk to warrant the side effects from chemo, and with such a low risk, the benefit from chemo would be just a fraction of 1%.

    Edited to Add:

    To your other question, "why wouldn't a surgeon just remove a IDC tumor, instead of trying to shrink it first? Wouldn't waiting be putting the person at risk of the cancer spreading?" the answer is that having chemo first before surgery does not increase the risk that the cancer might spread. Here's why: Most breast cancers have been in the breast for 3-5 years before they become large enough to be detected. The time between diagnosis and surgery, even if a few months, is relatively short compared to how long the cancer has already been in the breast undetected. Therefore if the cancer is going to spread (i.e. metastasize/move into the body), it is more likely to have already done so before the cancer was diagnosed. This explains why women who have mastectomies - removing the entire breast with a 98%-99% certainty that all the cancer cells in the breast area have been removed - nevertheless have the same risk of mets and the same mortality rate as women who have lumpectomies. And this is why in situations where the risk of metastasis is high - because a cancer is very large, or there is extensive nodal involvement, or the cancer is very aggressive - chemo will often be given before surgery. This is a more aggressive protocol because it immediately goes after any cancer cells that might be in the body, while at the same time attacking the cancer cells in the breast.


  • Mariadelpilar
    Mariadelpilar Member Posts: 65
    edited April 2020

    dear only girl,

    I two had 2 tumors. They were pretty close together. One was 19 mm and the other one 6mm but the oncologist said I couldn’t have the oncotype test because they were two “primary” tumors. Does that make sense? What does that mean? I had chemo and I’m now doing radiation, but would have loved to know my oncotype test score.

    Thank you for your input.

  • missmelis01
    missmelis01 Member Posts: 1
    edited April 2020

    I am newly diagnosed and was told that because of the treatment delays due to covid-19 that oncotype testing is being ordered early. Both my oncologist and my surgeon (they are at 2 different hospitals) said the oncotype testing is being done on the biopsy samples once breast cancer has been confirmed.


  • Kel25
    Kel25 Member Posts: 25
    edited April 2020

    I received a call from Medical Oncologist and he said that the lab called and said they were unable to get results for Oncotype test because the sample from biopsy was not a large enough sample. He said that he could re-order the Oncotype, but that would be another 10 days and he suggested moving on to surgery.

    I asked about the pathology report and it reading DCIS and ICD and he explained that the DCIS part are the small microcalcifications and the palpable lump is the ICD. So at this point, I am suppose to meet with him this week to discuss a mastectomy. The mass is too large for lumpectomy.

    missmelis01:

    I hope you are able to get results from your Oncotype via the biopsy.

  • Beesie
    Beesie Member Posts: 12,240
    edited April 2020

    Ah, I'm sorry that you couldn't get the Oncotype result but I'm not surprised because needle biopsy samples are usually too small.

    The clarity from your MO is helpful. So your diagnosis is primarily IDC (the mass), with some associated DCIS (the calcifications). That makes sense, but certainly wasn't clear from how the biopsy pathology report was written up. Based on this, while the DCIS needs to be surgically removed, it is otherwise not a factor in your treatment plan. Everything recommended after surgery will be based on the size and pathology of the IDC.

    Good luck with your appointment this week and I hope your surgery can be scheduled in quickly.

  • Kel25
    Kel25 Member Posts: 25
    edited April 2020

    Beesie,

    You are right, it was not clear based on the pathology report, or at least not clear to me. My appointment is scheduled for Thursday with the surgical oncologist to discuss the surgery procedures and answer any questions. They called this morning with a surgery date 2/24. Any advice you can offer on some good questions to ask at my appointment on Thursday would be greatly appreciated. I am going to write a list of questions starting tomorrow.

    Thank you for responding and sharing your knowledge.

  • Kel25
    Kel25 Member Posts: 25
    edited May 2020

    Okay, more questions. I had mastectomy and sentinel node biopsy. They removed a total of 17 nodes. Two nodes were positive. One sentinel node was 12mm and one axillary node was 9 mm. The pathologic staging reads as follows: pT1b pN1a, I think the Surgical Oncologist said this is stage 2b, is that correct?

    I was originally going to have oncotype test ordered after surgery, however after surgery, they ordered Mammaprint. Why would the outcome of the surgery change the type of test ordered? What is the advantage of Mammaprint over Oncotype? I thought I read that Oncotype can be done with upto 3 positive nodes? MO called Friday and said that Mammaprint resulted in low score and I don't need chemo. Should I be asking for Oncotype and/or any additional testing before starting treatment?

    Finally, should I be seeing a MO that only treats breast cancer?

    Thank you to anyone that can offer some input.

  • edwards750
    edwards750 Member Posts: 3,761
    edited May 2020

    I had the Oncotype test in 2011. I got a low score so I dodged chemo. I asked my BS what the difference between the two tests were and she said the Oncotype test has been around longer. I know there is a difference in how they categorize your risk of a recurrence. Oncotype has low, intermediate and high risk. Mammaprint has only low and high risk. Idk why your doctors ordered that test but the fact you can skipchemo because of a low score is a good thing. Both tests are pretty accurate.

    My MO was on staff at the West Cancer Clinic in Germantown, Tennessee. I live just outside Germantown in Collierville. She treats all kinds of cancers. I did have a BS who specialized in breast cancer. I was advised to do that and I’m glad I did.

    You are going to have a long term relationship with your MO. He/she will be your No. 1 person for medical care. I think if your MO is qualified and you feel comfortable with him/her that’s all that matters.

    Good luck!

    Diane




  • Kel25
    Kel25 Member Posts: 25
    edited May 2020

    edwards750,

    Thank you for sharing your knowledge and experiences. I think my MO treats all types of cancers as well. Just didn't know if I should be seeing a MO that only treats breast cancer. I am suppose to have appointment this week with MO and I will ask why was the test switched from Oncotype to Mammaprint. I hope you are doing well. Thanks again for responding.

  • SpecialK
    SpecialK Member Posts: 16,486
    edited May 2020

    kel - it is possible that your MO switched because it may be faster to get a result from Mammaprint than Oncotype at this point due to staffing, etc. These are proprietary tests, only done by a single lab - so if there was a back up in testing time that may have been what prompted the switch. The surgical outcome is not likely to have been what changed which genomic test is used, but some oncologists have their own reasons for deciding which test they prefer in what circumstances. I had a Mammaprint test done at diagnosis because my BS was involved with a study at Agendia. The Mammaprint test actually provides a more comprehensive genomic profile than Oncotype, and is not limited to a specific arrangement of hormonal receptors. It is unlikely that your insurance company would pay for Oncotype after a low Mammaprint result because there is no gray area with the result. If you had received an Oncotype result in the intermediate area it is possible your insurance would allow Mammaprint as a tie breaker, but not the reverse. Wishing you the best!

  • Kel25
    Kel25 Member Posts: 25
    edited May 2020

    SpecialK,

    I did not even think about your point. With COVID 19, quicker results may be the reason for the change from Oncotype to Mammaprint.

    Thank you.

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