For members not diagnosed with breast cancer, but waiting for test results: Biopsy, mammogram, ultrasound, or other screening tests. Waiting is VERY difficult but remember...
"Worry does not empty tomorrow of its sorrow. It empties today of its strength." -- Corrie Ten Boom
Posted on: May 21, 2020 09:54AM
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.Log in to post a reply
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Posts 1 - 13 (13 total)
May 21, 2020 11:14PM Beesie wrote:
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.
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.
May 22, 2020 02:41AM - edited May 22, 2020 02:42AM by Jons_girl
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
May 22, 2020 06:49AM Kel25 wrote:
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.
Thank you for sharing your experience. Since you diagnosis and surgery do you know receive any additional screenings such as MRI's?
May 22, 2020 03:09PM Jons_girl wrote:
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.
May 22, 2020 10:37PM jcp wrote:
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
May 23, 2020 08:20AM Kel25 wrote:
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.
Very good question, I had not even thought about how difficult it could be to get insurance approval for additional screenings.
May 24, 2020 02:54AM - edited May 24, 2020 02:58AM by jcp
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
May 25, 2020 12:42AM Jons_girl wrote:
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
May 25, 2020 01:25AM Jons_girl wrote:
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:
May 25, 2020 09:54PM Jons_girl wrote:
May 26, 2020 10:04AM kathabus wrote:
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.
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