CT of chest and abdomen to detect spread to axillary nodes

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Kel25
Kel25 Member Posts: 25
edited December 2020 in Waiting for Test Results

I am not actually waiting for CT results, but didn't know where else to post this question. Here is my situation. I was diagnosed on 3/13 with IDC, had mastectomy on 4/24. Prior to mastectomy I had ultrasound and Breast MRI. Both ultrasound and MRI showed no spread to nodes. During mastectomy, I had Sentinel Node Biopsy, one node was positive (macromet) , also had axillary node that was positive (macromet). A total of 17 nodes removed, I think 15 were axillary nodes. so 2/17 positive with macromet.

I was late sent for CT of chest and abdomen and bone scan, both were negative (THANK GOD). My concern is if the MRI and ultrasound did not show the two positive nodes, how reliable is the CT to detect any positive nodes? I asked my Breast Surgeon how did he determine how many to remove, and he said he cannot actually see the axillary nodes he just scoops out a section and they test how many are found within the tissue.

The mass was positive for hormone receptors and HER2 negative. I also had low mammaprint score and oncologist is not recommending chemo, she is recommending radiation and hormone therapy.

I am the 15th person in my family do be diagnosed with cancer. The 5th with breast cancer, I was negative for any gene mutations.

The mass was present and palpable for sometime, and surgical pathology report says there was a span of 90 mm of DCIS as well as IDC (10 mm, I think). I am concerned that the cancer was present for a longtime never detected. I have another palpable mass in other breast that has been present for 10 years, maybe I should request biopsy of it? I have very dense breast tissue.

Sorry for the ramble, just a lot of concerns.

Thanks to anyone that offers input.

Comments

  • Kel25
    Kel25 Member Posts: 25
    edited May 2020
  • Beesie
    Beesie Member Posts: 12,240
    edited May 2020

    Kel, positive nodes may have a little as 2mm of cancer (or less if it's micromets or ITC). Something this small will never be visible on an ultrasound or MRI. If screening was reliable, sentinel node biopsies wouldn't be necessary. I was warned by my surgeon that screening will find nodes with a lot of cancer involvement but having clear nodes on screening does not mean that the SNB may not find nodes with a small amount of cancer.

    Once a sentinel node is found to be positive, if the surgeon proceeds to an axillary node dissection, because the cancer in the nodes is invisible to the naked eye, normally the surgeon will remove all level I and level II nodes. The number of nodes differs by individual, so this can as few as 10 nodes or as many as 40.

    Axillary lymph node dissection (ALND) https://www.cancer.ca/en/cancer-information/diagno...


    image


    I don't know much about CT scans, but my understanding is that no screening can reliably/consistently find cancer that is less than 5mm in size.

    As for how long your cancer was present before being detected, it is generally believed that most breast cancers have been present for 3-5 years, or possibly longer, before they become large enough to be detected by imaging. This chart, which I posted recently in another thread, shows how the size of a cancer changes over time, based on a 100 day doubling rate. The doubling rate for some breast cancers might be slower than that. That said, if you've had a mass in your other breast for ten years and it has remained stable in size and has not grown, it's extremely unlikely to be cancer.

    image

  • Jons_girl
    Jons_girl Member Posts: 696
    edited May 2020

    Kel: my cancer tumor was 4mm caught on ultrasound.

    I too have extremely dense breast tissue. I am small breasted and I had felt the lump by accident. I had not been doing manual exams. Then a breast center did a diagnostic 3d mammogram. Even put a sticker where the tumor was. I got a copy of the film disk. The tumor is nowhere to be seen on the mammo films. The sticker is very visible. No tumor. Amazed me what they couldn't see! Dense tissue shows up on mammo as white cancer shows up as white too So extremely dense tissue is like a snow storm

    Diagnostic Ultrasound was done next. That showed the tumor AND blood source to the tumor. It was only 4 mm. I was thankful for the diagnostic ultrasound

    I too have cancer in my family...I was negative too for any breast cancer genes

    If I were you I'd have the other breast checked too just my opinion I'm not a dr tho


  • Kel25
    Kel25 Member Posts: 25
    edited May 2020

    Beesie,

    Thank you for the information. The two nodes that were positive wer 9mm and 12 mm and I was shocked that at that size, they were not detected via ultrasound or MRI prior to surgery. Knowing they were macromets makes me worry that there could be one that was missed during surgery that was not seen on CT. Thank you for the chart that shows the rate of growth, it is very helpful. It is 2020, you would think we would have better imaging tools to detect cancer. Shocking to see that some cancers could take 10 years to detect. I met with Radiologist Oncologist and he said he thinks I will need 6 weeks of radiation. 5 weeks to the chest and 1 week to the upper clavicle area. I asked him if I would receive direct radiation to the axilla area and he said no. I asked him why not, given the positive macromet node, he said radiation to the axilla can cause more scarring and didn't think it was necessary because I had axillary node dissection. Just nervous about possible nodes still there that could be positive.


    Jons_girl,

    Thank you for sharing your experience. Since you diagnosis and surgery do you know receive any additional screenings such as MRI's?

  • Jons_girl
    Jons_girl Member Posts: 696
    edited May 2020

    Hi Kel25: Yes I have ultrasound every 6 mo. And my breast doctor is now wanting me to add MRI possibly once a year so would be ultrasound then MRI. But yes I have a diagnostic every 6 mo. I chose after surgery not to have radiation and I do not take hormone blockers, by choice and my MO's support. So instead I have diagnostics every 6 mo which I actually prefer. If it were to return I would want to catch it early again.


  • jcp
    jcp Member Posts: 112
    edited May 2020

    Jons_girl, its JCP. I was reading where you get an ultrasound every six months but may be moving to a MRI and ultrasound alternating. Well, after 10.5 years of anti estrogen drugs I came off due to dr worried about further bone issues. Anyway, since I came off the med, i wanted more surveillance but my dr said she cant get approved by any insurance for a screening MRI unless there is a noted problem. I have moderately dense breasts, in the middle. I asked her about the density and she said that's why I order 3d mammograms for you. So, basically no need for anything else. How in the world did your onc insurance approval for MRI's? Bc yours are VERY dense? I almost switched drs bc I wanted a mammogram every six months bc couldn't get anything else ordered. She wouldn't do the mammogram more than once yearly. She says she wouldn't know what to put on form when ordering another mammogram or a MRI. I even said I'd pay for the mammogram. Ended up getting screened w ultrasound company that's been around for years that goes to different parts of a few states. No order needed. Scared tonight. I googled my issues for CT again. I don't know. Take care Susan

  • Kel25
    Kel25 Member Posts: 25
    edited May 2020

    Jons_girl,

    Thank you for the replying. It sounds like you have a pretty diligent team to make sure you are getting all the screenings you need.


    jcp,

    Very good question, I had not even thought about how difficult it could be to get insurance approval for additional screenings.


  • jcp
    jcp Member Posts: 112
    edited May 2020

    Jons_girl, It does sound like you have a great team of drs really getting you the best surveillance possible. I am glad for you. My post on here the other day was just frustration surfacing due to my struggle w getting increased surveillance. I am so sorry of how it sounded. I have not left my onc of 10 years. I tried to. I went to another dr and he said doing a bmx was a lot to do then w risk etc. He did say he would let me get the mammogram every 6 months but I may have to pay for second one. He was going to do what I wanted, well I really wanted MRI once yearly, but I can't remember if I asked or what he said. I ended up seeing him two times, and the office was so foreign and different to me. It was a lot smaller and they didn't do blood work on the spot. That would have been a little inconvenient to go to a lab Corp or Quest in enough time for dr to get results prior to my appointments. Being a teacher would just make it an extra step to plan for. Eventually I just decided I would stay w the female onc I have had so long. Not sure if it was right choice idk. She has been there for me and office staff when needing to come in with rash on breast that she thought was mastitis. They saw me that very same day. She gave me an antibiotic and it cleared up in 2 days very quickly. After that she scheduled me for mammogram or MRI . I think she actually ordered MRI for me. This was about a year ago. MRI was normal. Anyway, have a great weekend. That is so impressive that you found a 4mm lump. Wow! You got skills, girl!! Lol . Getting more anxious by the day waiting on results. I could have tried to go after them on Friday but for me that's not my style bc I am so afraid to call. I am a definite squeaky wheel for other health issues like the mastitis, etc. Its these diagnostics. I think it stems from my mom who had br ca for 19 years who was always waiting on results, and it was so difficult for her (and her children). I prayed a lot for her and was by her side for many diagnostics from pet scans to ct scans to dr appointments , infusions for bone health, and more. She really did quite well especially for the time period. She had a very active life for the 19 years w exception of last 6 months. She was only on infused chemo one time when she was initially diagnosed in 1987. She was able to do hormonal "chemo" pills like Faslodex etc. as hers was extremely hormone responsive. She went through so so many tests, was a victim of medical negligence that I'll have to tell you about some day. You will not believe it. I just know what this disease involves and you'd think that would make me worry less, but it doesn't. Have a great long weekend! I'm happy to be off Monday! I hope and pray for good results next week. I also prayed tonight for any and all sisters on this site and mentioned the ones I know by name or username including you, Tami! Take care

    Susan JCP

  • Jons_girl
    Jons_girl Member Posts: 696
    edited May 2020

    Hello JCP I’m going to private message you regarding your questions you posted here since I didn’t start the thread. Hope that’s ok.

    Hope all are having a wonderful holiday weekend

  • Jons_girl
    Jons_girl Member Posts: 696
    edited May 2020

    kel25: MRI or additional breast cancer screenings are not difficult to get insurance to pay for if you have any symptoms or dense tissue. Also I have a breast dr who advocates for me. Very important. Having extremely dense breast tissue qualifies me for additional screening in my state. Most states have laws as well for women with dense breast tissue to qualify for more screening. They never saw my breast tumor on a 3D mammo. Pure and simple it was missed! Ultrasound was the important screening tool for me in 2017. But I know ultrasound isn’t perfect either all the time for everyone. My breast dr wants me to have two different screening diagnostics per year. Mri she’d like me to think about adding She is a good dr.

    If you’ve never seen this website it’s pretty amazing all the stories women share about their cancer being missed:

    https://www.areyoudense.org/stories/

  • Kel25
    Kel25 Member Posts: 25
    edited May 2020

    Jons_girl,

    Thanks for the link for the website, going to check it out.

  • Jons_girl
    Jons_girl Member Posts: 696
    edited May 2020

    You're welcome!

  • kathabus
    kathabus Member Posts: 205
    edited May 2020

    Hi--I was told 8mm mass with no nodal involvement. That was based on what they saw after 3D mammogram, ultrasound and MRI.

    After surgery, we found that the mass was 25mm and the sentinel node that we removed had 8mm of macromets. As far as the node goes, they just didn't see any reason to suspect macromets with what they saw.

    I asked about why we didn't see the macromets on the screenings.....they said it just didn't show. Sometimes it's obvious and sometimes it's not.


  • Jons_girl
    Jons_girl Member Posts: 696
    edited December 2020

    kel 25: how are you doing?? We haven’t had any updates from you I don’t think. So just checking with you. Hope you have a good weekend everyone

  • Kel25
    Kel25 Member Posts: 25
    edited December 2020

    Hi Jons_girl,

    I hope you and everyone else are doing well. I initially was told I would not need chemo. However, it turned out I did. The tissue from the breast tumor showed I did not need chemo. However, the tissue from the nodes showed that I did in fact need chemo. The test from the breast tumor came back first and the oncologist was unaware or forgot that the surgeon ordered the test for the tissue from the nodes.

    I had 15 total nodes removed, two were positive. I did 16 weeks of chemo and am now doing radiation. I just did my 12th of 30 total treatments today. I have been TRULY BLESSED BY GOD to have minimal side effects from treatments.

    Thank you for asking about how I am doing, I appreciate it.


  • Jons_girl
    Jons_girl Member Posts: 696
    edited December 2020

    kel25:sorry for my slow reply. Thank you for updating us on how your treatment is going. 💐I hope all continues to go well. We are here if you want to chat or if you want to update us. Sending a hug your way. Hope your week is going well.

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