MRI Radiologist Has Me Terrified
I was recently diagnosed via an unconventional route, dermatology, due to spots on my nipples. I've since seen a surgical oncologist and a medical oncologist. Initial thoughts were likely stage one as they could feel no swelling in my lymph nodes and my mammogram and ultrasound were clear.
But my MRI came back a couple days ago and the radiologist did not hold back. She said she could not believe my mammogram and MRI was from the same person because while she could see nothing on mammogram, "cancer is everywhere" in my breast. She said there's a spot behind my nipple that looks to be 10cm. She said there's another spot in the upper quadrant and one lymph node that is enlarged. Although she did say that could be from my recent biopsy.
She kept calling it cancer, in those other spots. Not suspicious spots but cancer. She said there's one spot in my other breast that we will biopsy just in case but she's not concerned about that spot, as it "doesn't look like cancer."
I went from thinking I have stage 1 cancer to thinking I'm going to die. I have a tumor on my finger that has had an MRI that said it's likely a giant cell tumor of the tendon sheath, which are almost always benign. My orthopedic surgeon says he's quite sure it's not cancerous and not mets but we can't know for sure until that's biopsied. And we can't do that right now because he would need to take it out which we need to address the BC first.
Now I'm having abdominal pain. My hip started hurting a couple months ago. I thought it was muscular and treated it as such. It's improved but not gone. My back has been hurting more than usual over the past 6 months.
And all of that has me terrified! I know how pain works. I know fear increases it. I can't help it. I'm having trouble sleeping since the radiologist called me. Now I fall asleep and wake up 30ish minutes later in a panic, actually gasping. I was doing great before her call. Now I'm a mess.
This is hellish.
Comments
-
Hi @cmre00, I'm so sorry that you have to navigate an unusual diagnosis. You may not hear from anybody who was in the same situation for that very reason. I sympathize since my breast cancer was diagnosed by an oral surgeon (really!) There is no way to figure out exactly what is going on and what the treatment will be since there is nothing out there to compare it to.
I ended out travelling to a large cancer center with a breast department for treatment because things were somewhat beyond the expertise of my small rural hospital (three radiologists, one pathologist, two oncologists and several general surgeons who do everything.) It sounds like your hospital has more specialization than mine but since things are out of the ordinary it might be worth at least getting a second opinion from a large place which has seen it all. Also, if a bone tumor specialist is on staff they would be able to make a pretty good diagnosis of your finger tumor from an MRI. I'm also dealing with a bone tumor in my hip which can't be biopsied so I've learned something about them. Your ortho is probably right that it's a benign giant cell tumor since mets in the hand are rare but I understand why you are worried.
Because BC is the overriding diagnosis in your case that has to be taken care of first. I had to wait until a jawbone infection was cleared by IV antibiotics before my BC could be treated. I turned out to have a common diagnosis of stage 2 IDC with one positive lymph node. It was just a very unusual presentation which wasn't seen on mammograms for two and a half years. Try not to panic since there doesn't seem to be a definitive diagnosis yet.
If you continue to have trouble sleeping and the anxiety worsens you might want to consult your PCP about meds to get you through this rough patch. I hope you get some answers and a plan for treatment soon. Cyber hugs for you.
0 -
Hi @cmre00 -
So sorry for all that you are going through!
The best thing that you can do for yourself right now is take a deep breath and then take things one step at a time. I assume you have upcoming appointments. Focus on each one as they come up. Try and keep calm. You don't know what you don't know. As you get more answers, you will start to feel better. Once there is a plan in place, it will feel like you have a direction and a path to follow.
Once you get your diagnosis and treatment plan firmed up, there are likely people on these boards who have been through it and are here to lend you support.
Take care.
1 -
@maggie15 Wow! I thought my diagnosis was unusual! I have never heard of BC diagnosis via oral surgeon! I'm glad s/he found it, especially not showing up on mammogram for two years.
I do have a second opinion set up with a large NCI rated cancer center next week. I will ask about having a bone tumor specialist review my MRI. That's a great idea. Thank you! I do recall the MRI report saying there was no bony infarcts or other marrow edema processes. Hopefully that is a good sign.
@mandy23 Thank you. From reading these boards I hear that this is the hardest part, the unknowns. I was so nervous at first but when everyone was saying stage 1 I felt like ok, that's good news. I can do this! Now I'm just so overwhelmed.
Thank you both for your support. I'm definitely looking forward to more answers and a second opinion. Unfortunately I won't have the biopsies before I meet with the large cancer center. But at least they'll be able to look at all the other tests I have so far.
0 -
Sorry, I thought I replied yesterday but I guess it didn't go through.
@maggie15 Wow! I'm so surprised to hear you were diagnosed by an oral surgeon. I bet that's not something you see on the boards very often! I do have an appointment with a large NCI rated breast cancer center next week. Unfortunately it won't happen before my biopsy though. Hopefully they will still have some good information for me though. I love the idea of getting a bone tumor specialist to look at my hand MRI. I will definitely ask for that. Thank you for that suggestion! I do recall that the MRI report said there were no bony lesions or bone marrow edema. Hopefully that's a good thing!
@mandy23 Thank you for the support. I am working on taking it day by day. Some times I feel fine. Other times the anxiety creeps up and it feels overwhelming. I keep focusing on all this other pain that I'm having and I'm trying to reassure myself it's not mets. I'm using positive affirmations and they are helping too.
Thank you both for your responses and support!
0 -
@cmre00 Since there is uncertainty about what the stage is (pending more tests — likely many more tests in the next few weeks), I will say to continue to hope for the best, not the worst possible outcome.
It's not unheard of for a tumour to not show up on a mammogram although it's not common for that to happen… it happened to me, I discovered a puckered nipple a few months after a clear mammogram, which led to more tests and a cancer diagnosis. Dense breast tissue can hide a tumour from showing up in a mammogram in those odd cases.
The staging phase is a rough roller coaster. Waiting for test results is never easy. Just going to send you as much encouragement as I can from a distance. Once you get solid answers, things will start coming into focus and the treatment plan will come together. That will also happen sooner rather than later. Keep putting one foot in front of the other in the meantime.
1 -
@doodler Thank you for the support. I see your diagnosis in your signature. I hope you are doing well. This staging phase is definitely a roller coaster. That is the perfect term for it. Thank you for your kind words and encouragement. I am wishing you the best with your treatment!
1 -
@doodler Thank you for saying that. I am trying my best not to go there. Saying lots of prayers and positive affirmations and focusing on my family while I wait. But you are right, it's hard not to feel consumed by the fear that I'm in that poor statistic too. But I'm glad to see that you are in treatment and doing well so far!
1 -
I wanted to give an update on my appointment at the NCI hospital. It went pretty well. I was able to see the MRI images and have them explained to be by the SO. Basically there is a 2.3cm mass right at my nipple, which explains why the cancer grew out of my nipple. She was able to feel it during the breast exam (no one else has but she knew where to look). Then there are a bunch of other areas that took up the contrast but not as fast or as much. Those areas may be DCIS she said. All together it's a lot, but hopefully those other areas are non-invasive right now. There is another spot along the path towards my lymph nodes that they are concerned about and then one lymph node that is pretty enlarged. She was also able to find that by digging around. The original radiologist said there was a chance that node is enlarged because of the biopsy I had two weeks prior. But the SO didn't agree. Right now I am just praying that is all it is. My body is not a fan of sutures and I had only had the suture removed the day prior to the MRI. Untill the suture was removed I was having a lot of pain and discomfort from the suture. So I'm holding onto hope that is all it is. I have an ultrasound and biopsy on that lymph node and the other areas of concern tomorrow.
I brought up the other pain I've experienced and the MO said let's just order a CT and bone scan instead of waiting around to see if that lymph node is positive. So I'm having that next week. In regards to my finger, they all agree it is unrelated. I'm fact the PA used to work for the hand surgeon I've been seeing. So that was a fun coincidence.
At this point they are staging me at 2A. They suggested the ISpy clinical trial. I agreed to be screened for it but I haven't decided whether or not I would do it.
0 -
@cmre00 , I’m glad you had a productive appointment and received answers to many of your questions. It is worth traveling to a NCI hospital because of the expertise. The lymph node biopsy is being done quickly so that’s another issue that will have an answer soon. Having the CT and bone scan will address your other concerns. It’s quite a coincidence that the PA had worked for your hand surgeon.
Get screened for the clinical trial but check with your health insurance to make sure it’s OK with them. I was screened for a clinical trial but then found out that insurance wouldn’t cover treatment for any adverse effects that occurred since I wasn’t stage IV. I declined to take part for that reason and the surgeon understood.
I ended up with one positive lymph node. I had DCIS as well as a 3.2 cm tumor but was able to have an oncoplastic lumpectomy since it was all in the same location. If it’s in different spots a mastectomy will probably be recommended. I didn’t need chemo because of my Oncotype score and had axillary radiation added to address the node which was removed. All that is determined after surgery.
I hope the node is clear. Thanks for updating us.
0 -
@maggie15 That is good to know! I'll call my insurance to make sure. Thank you for that tip!
Did you have a fair amount of DCIS or was it a small amount? They did recommend a mastectomy, which I am ok with. I still haven't met with a radiation oncologist yet. But I guess that's still up in the air right now.
0 -
@cmre00, I did not have much DCIS and it was adjacent to the tumor. My surgeon was confident the oncoplastic lumpectomy would work well as long as the area was less than 5 cm. If the DCIS is in different areas a mastectomy would be recommended.
You may or may not need radiation but often that is not determined until after surgery. If you are planning on reconstruction an implant can be problematic if you need radiation. An autologous flap using your own tissue has a longer recovery but might work better. You can make tentative plans going forward but sometimes surgery and testing afterward can change them. You seem to be working with a good medical team which knows all the options.
0 -
@maggie15 I'm glad the lumpectomy worked well for you! It sounds like you have a good team as well!
I don't think I'll be doing reconstruction. I think I'll just stay flat. I don't want to keep going through procedures.
I just had 4 biopsies today. One in my right breast which she thinks will come back benign but she said it did look a little different so since I'm here I should do it just in case. The other 3 in my left breast. The one node that is enlarged, and two other spots where the MRI showed suspicious findings. She thinks those three will come back cancerous. She said she's pretty confident they will but she has been wrong before.
I feel so tired and defeated. I went into this thinking it was early and I would fight and still have a lot of life left in me and now I feel like I just keep getting bad news. I'm so scared for the CT and bone scan next week.
I know if it's there it's there and it's good to know about it. But I'm just so scared to hear it. That will make it real. It's real now of course but real real bad if it's mets.
The radiologist didn't think those other areas are DCIS. She thinks it's lobular. She said they aren't masses but cancer can behave in different ways.
I just feel like IDK how much more bad news I can take. Thanks for listening. I just need to vent I guess
1 -
@cmre00, It's discouraging when an initial diagnosis gets worse. The IDC in my biopsy sample was missed by the local pathologist and a sentinel lymph node was positive even though it didn't show on ultrasound so I understand the feeling of being blindsided. Imaging is very useful but only pathology after surgery gives the true extent of things. Right now your doctors think you will be stage 2 which is still considered early stage. It is possible to be initially diagnosed with stage 4 but that only happens about 6% of the time.
Waiting for scans and results causes anxiety but it is much better to check and catch things as early as possible to have the best outcome. My lungs, esophagus and hip bone are currently under imaging surveillance but I figure anything bad will be caught early which is a good thing.
Whatever happens you will be able to deal with it. I had a serious adverse reaction from radiation which I never expected but I'm still around to tell the tale. Whatever your diagnosis or treatment there are plenty of people here who have been through something similar and will commiserate or give advice. Feel free to vent since it helps to say it to people who understand and won't freak out. Virtual hugs for you.
2
