13 cancerous lymph nodes not detected on imaging

Posted by azrhonda @azrhonda, Nov 20, 2019

I’m 46 years old and do my mammo every year since 40. Suspicious findings in July. Biopsy confirmed invasive lobular. MRI and pet scan did not show any more cancer. Mastectomy 10/23. Pathology found invasive Ductal cancer too as well as lobular cancer in sentinel node. Surgery last week to remove axillary lymph nodes. 13 of the 17 contained cancer. The news keeps getting worse. I don’t understand how 13 lymph nodes containing never showed up on imaging. I now worry that that the cancer has metastasized and just isn’t showing up. Please help me make sense of it all. Thanks

Liked by trixie1313

@azrhonda
Well… shoot. What a shock that must have been for you. I can only hazard a guess. The radiologist who read my mammogram identified one tiny lesion. While having the lumpectomy, it turned out there were two different kinds of tumors in that spot… both larger than the image would suggest. The sentinel node was clear, however. Does that mean that the other nodes were clear? That's an assumption based on statistical risk only.

The thing about cancer is that it can spread teeny tiny cells into the lymphatic system and the bloodstream, impossible for a radiologist to see or for an oncologist to find in a blood sample. That's why many of us get radiation and/or chemo and/or targeted therapy and/or hormonal therapy… trying to destroy those migrant cells. I'm thinking that, when the surgeon had your sentinel node tested and found lobular cancer there, it was necessary to go back and harvest surrounding nodes.

Your oncologist will recommend a treatment plan individualized just for you to help seek out other migrant cells which may or may not place you at risk for recurrence in the future. Is that a rock solid prevention? No, and that's the hard part of this journey… nothing is. Over the months and years ahead, you may or may not want to delve into those statistics with your oncologist. Just don't despair… some days all of us are brave… other days, not so much… but we're always here for each other (which includes YOU).

REPLY

@azrhonda
I am so sorry you are going through all of this – the shock alone is enough. I had 3/7 cancerous nodes with one eroding into the lymphatic system. Because it had eroded (opened and went beyond), I had extra radiation into the upper area. However, it was stressed to me that because of that it is highly likely cancer is lurking elsewhere. We just cannot let the fear take over, we must focus on one day at at time and continue on. You can do this…we all believe in you.

REPLY
@elizm

@azrhonda
Well… shoot. What a shock that must have been for you. I can only hazard a guess. The radiologist who read my mammogram identified one tiny lesion. While having the lumpectomy, it turned out there were two different kinds of tumors in that spot… both larger than the image would suggest. The sentinel node was clear, however. Does that mean that the other nodes were clear? That's an assumption based on statistical risk only.

The thing about cancer is that it can spread teeny tiny cells into the lymphatic system and the bloodstream, impossible for a radiologist to see or for an oncologist to find in a blood sample. That's why many of us get radiation and/or chemo and/or targeted therapy and/or hormonal therapy… trying to destroy those migrant cells. I'm thinking that, when the surgeon had your sentinel node tested and found lobular cancer there, it was necessary to go back and harvest surrounding nodes.

Your oncologist will recommend a treatment plan individualized just for you to help seek out other migrant cells which may or may not place you at risk for recurrence in the future. Is that a rock solid prevention? No, and that's the hard part of this journey… nothing is. Over the months and years ahead, you may or may not want to delve into those statistics with your oncologist. Just don't despair… some days all of us are brave… other days, not so much… but we're always here for each other (which includes YOU).

Jump to this post

Very good explanation. Thank you.

REPLY

Going into surgery I knew I had one lymph node that was positive (was found on MRI). During surgery I had a lumpectomy and surgeon removed two lymph node, both positive. While I was glad they only took two nodes, I was also concern did they miss anything. I asked the surgeon how she knew if she had taken enough lymph nodes. Her answer was it was based on experience (or something similar). I had chemo and radiation after surgery to kill any microscopic cells left and now take AI meds.

Next week I have first MRI and Mammogram post treatment to see if any re-occurrence.

Make sure you have a list of question about your concerns to take to your next oncologist appt.

Laurie

REPLY

This is interesting. I did not know that lymph nodes showed up on an MRI of the breast. My lymph nodes were taken out at the time of my lumpectomies and tested…all clear thank God. With my last cancer, two MRIs said what had showed up on a mamo was benign twice. I insisted on a biopsy and had DCIS, IDC and a fibroadenoma. Your test results are only as good as the Dr reading them. I have developed a mistrust for radiologists. Even if they do bad work, nothing happens to them. It all seems to be a crap shoot.

REPLY

I have heard from a friend that went to MD Andersen there is a "nuclear" PET scan that is suppose to be better. They have to mix the material and use it within 2 hours. Not sure if Mayo offers this or not. I have never had that type of PET. I had a full axilla node dissection with 50 lymph nodes. Only sentinel node was positive. I understand the normal number of nodes is 25-30. I never had an MRI for breast only ultrasound.

Liked by trixie1313

REPLY
@jdriver

I have heard from a friend that went to MD Andersen there is a "nuclear" PET scan that is suppose to be better. They have to mix the material and use it within 2 hours. Not sure if Mayo offers this or not. I have never had that type of PET. I had a full axilla node dissection with 50 lymph nodes. Only sentinel node was positive. I understand the normal number of nodes is 25-30. I never had an MRI for breast only ultrasound.

Jump to this post

@jdriver
Surgeons now are re-defining how many nodes are taken. At my local medical center they take many lymph nodes whilst where I went for my surgery (Oakland, CA), the surgeon believed less is more as the more you take the more likely for lymphedema. I, myself, undergo PET scan now every 6 months as the second lesion found on MRI is more aggressive and can show up any time, anywhere. The second lesion is neuroendocrine cancer which is rare, although it is being found more and more as pathologists start using the proper dyes. I am grateful every day that I requested breast MRI as I was concerned following my first lumpectomy which showed invasive ductal cancer that "what if my cancer is in the other breast." My surgeon agreed and that is where we found this second aggressive lesion in the same breast. Had I not pushed for this, my outcome would be quite a different result. Never stop being your own advocate.

Liked by elizm

REPLY
@sandyjr

This is interesting. I did not know that lymph nodes showed up on an MRI of the breast. My lymph nodes were taken out at the time of my lumpectomies and tested…all clear thank God. With my last cancer, two MRIs said what had showed up on a mamo was benign twice. I insisted on a biopsy and had DCIS, IDC and a fibroadenoma. Your test results are only as good as the Dr reading them. I have developed a mistrust for radiologists. Even if they do bad work, nothing happens to them. It all seems to be a crap shoot.

Jump to this post

I went back and read my MRI report to make sure that I was correct and MRI showed lymph node. Report states "Mildly enlarged left low axillary lymph node." After MRI found node, then had a ultrasound assisted biopsy of lymph node to confirm cancer.

Liked by trixie1313

REPLY

Definitely agree with trixie1313, you must be your own advocate. I have dense breast and found my lump 5 months after a normal mammogram. I discussed with my oncologist that I did not trust mammogram results and wanted an MRI for follow up checks. He agreed. The next step was that I had to get insurance to agree. My insurance company requires all CT, MRI and PET scan be pre-approved. After some back and forth, they have approved my MRI for next week.
Laurie

Liked by trixie1313, elizm

REPLY

An MRI saved me. They were able to see my cancer very early. Only three months after a mammogram that showed nothing.
Every other year I have a MRI. Insurance always puts up a fight.

Liked by trixie1313

REPLY
@abartels

An MRI saved me. They were able to see my cancer very early. Only three months after a mammogram that showed nothing.
Every other year I have a MRI. Insurance always puts up a fight.

Jump to this post

I have to agree with @sandyjr …about tests results as good as tech's or drs reading them. Verrrrry scary. I was very sick a few years back, 2015, right side abdominal pain and fever…several visits to drs and then E.R. cat scans etc.
. No dr or tech found the problem…then 5 weeks later I dragged myself into a surgeon and he detected enlarged lymph nodes in my groin. I lost 7 lbs in 2 weeks. He removed the lymph nodes, tested benign, but enlarged. Suggested a colonoscopy, which I did, again dr doesn't know what's wrong. Now, as some here may have read, I was back for a repeat mamogram and ultrasound on the 12th of this month. Two spots of concern look benign but are of concern..repeat mamogram in 6 mos. The very next day, I'm trying to get over the testing and stress, I recieved a call from my local dr..my colon test came back positive for cancer!!. Now I have to go through all this AGAIN! My husband insisted I go through Mayo this time, since I'm already an existing patient there for pre-myeloma, mgus. I feel smacked down and broken, to say the least. I realize there are false positives, but I still have to take this dreaded road of more tests, tubes, anesthesia, and the dreaded prep. Hubby cried, hes afraid…God told him take courage. So yes…let's hope we all get great Drs, we trust our health with. Been over a week I called my oncologist at Mayo. They put orders in to a gastrointerologist, but I've not gotten an appointment yet. Trying hard to stay upright.

REPLY
Please login or register to post a reply.