MRI shows 6.5cm tumor- help!
I got the results of my MRI today, and learned that the ILC tumor which was 2.7 cm on ultrasound, showed up as 6.5 cm on MRI and had other "satellite tumors" off of it. My left breast was clear. My surgeon wants me to see an oncologist and try to shrink the tumor before surgery. Has anyone had any experience with this? He said something about my nodes that sounded as though some were questionable, but I can't remember - It is hard to remember much of the conversation. I see the oncologist on Monday. Maybe I will know more then. Have any of you already been through this?
Comments
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Hello Sweetcaroline2
I'm sorry you have to be here. I was diag in Nov 2011 with bc. My tumor was not that large but it was ILC and IDC. I am Her2+. So I am some different. I know you are scared and in shock. There are several new drugs and various treatments for bc now. Go to a good Onc, somebody that is very experienced preferbly a breast cancer clinic.
I am taking targeted treatments to try to shrink these tumors. I have had one chemo treatment so far also. I will not have surgery until a lot later.
Look around on this site and you will see there is hope out there.
You can PM me if you have any direct questions. There are a lot of ladies here that will be a very good support group.
Here is hugs to you.
Bev
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Sweetcaroline2-
I was diagnosed in December of 2010. My tumor was large and I had all sorts of satellites around the tumor as well. I was ER/PR - and HER2+. I had one node come back positive and had several other suscpicious nodes. I did chemotherapy before my surgery. My tumore shrunk 98% by volume. I then followed with surgery, a bilateral mastectomy (my choice). I had to have a masctomy on my left breast due to tumor size and all the sateliltes. I chose to have my other breast removed as well. I followed surgery with radiation. One year later I am doing great.
You are in the thick of things and are in the scariest part of the whole journey. Waiting for answers and waiting to start. LIke Bev said, find a MO you trust and go from there. Try to remember to breath.
this is a great forum and you will find all sorts of support here.
Hugs
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Hi there,
So sorry you have to be here, but you will find tremendous knowledge and support!
I had a very similar diagnosis, but for various reasons opted to have surgery first. My BS at Johns Hopkins didn't think I needed to have chemo first as their initial thought was the primary tumor (I had multi focal disease as well) was "only" about 3 cm. Well, after surgery, it was indeed 6.5 cm and I had 13/15 positive nodes. In hindsite I wish now I had done the chemo first to shrink the tumor. But it is what it is, and here I am over 2 years out. Do what your gut tells you and don't look back.
Let us know how you are doing.
Take care,
Sharon -
Yeah, sorry to say I have already been through this. I had a similar situation with tumor size, except mine was IDC. I had a large tumor (5.7) and another smaller tumor but then during my BMX found out my entire breast was infected with branches of BC. I did chemo then surgery and it went fine, they were able to shrink my tumors & get clean margins at surgery. I'm so sorry you've had to join us here. This is a wonderful site that got me through some low days, I hope you find it does the same for you. Once you meet with your onc and get a tx plan in place you'll feel more in control and ready to fight. I know chemo is scary and can be tough but it is managable with meds so, come here often we're here for you. Sending you hugs and prayers.
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SweetCaroline2 I'm so sorry you are in this place of uncertainty and fear. This is the hardest part. Yes, there are a lot of ladies here who have been where you are, SherriG came to mind immediately and she already posted. PM her with questions, she is a wonderful source of information on ILC and long term survival. My dx was a bit different than yours, but we all have gone through the stage you are in right now and understand where you are coming from. Whatever you need to know, just ask. Someone will be along to answer asap. Good luck to you. Hugs and prayers.
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Hi Sweet Caroline.
Sorry you've joined us. But we're an awesome group. and can help you.
Don't get too freaked out by the size of your tumor, Chemo will shrink it .
Sherri is the poster girl of ILC, so she's testimony of " life beyond"
I know it's hard in the intial days, but we've been there can help you.
One day at a time, dear girl. Come here often for support.
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SweetCaroline2--let me join the others here to tell you that I'm going through a similar diagnosis and treatment plan. I was diagnosed with ILC, and while the ultrasound showed 2 cm., the MRI showed that there was a 5 cm extension off of that 2 cm tumor. I think the MRI is more 3-dimensional than the ultrasound. I also knew from the start that I had a positive lymph node that could be palpated. It was about 2 cm, and the fine needle aspiration showed cancer.
I did chemo first, and I did have an excellent response (in my MO's words) to chemo despite having ILC and ER+ cancer. By the time of BMX, the tumor was 1.8 cm in entirety. The lymph node was smaller on the MRI after chemo. I don't know the size of the lymph nodes at the time of surgery because that doesn't seem to be part of the pathology report. I still had 10 out of 16 nodes with cancer in them, but my MO said there would have been many more prior to chemo. Seeing the first MRI compared to the second, the lymph node area in the first looked like a big clump of spaghetti, whereas in the second, there was much less activity in that area.
For me, I think the treatment plan was a good one. I do not know whether I was considered "inoperable" at the start. I still had to have a mastectomy. The thing about it that made sense to me was that I knew already that I had lymph node involvement and therefore wanted to attack any cancer that may have gotten into my system despite clear scans. The BS where I had my second opinion explained that it might be better to do the chemo while the tumor was still there so that the response of the tumor could be assessed, the effectiveness of the chemo determined and if it was not effective, another drug combo could be used. Made sense to me.
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Hi Caroline, so sorry to hear about your diagnosis. There are lots of us on here with large tumors. Below is a thread that some of us have been on recently. You can get a lot of info from reading here, and ask any questions you would like. My tumor (left side) was more than 9 cm in two directions, the shape of a tangerine. This early stage is the worst and most scary. Feel free to PM us with questions!
http://community.breastcancer.org/forum/47/topic/778961?page=9#idx_253
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I want to echo what others have posted. I had a 16 cm IDC tumor. It also imaged poorly on mammo. On the MRI, it appeared I had 2 rumors rather than one huge one. I did not have neoadjunctive chemo. I had right mastectomy, chemo and rads. It is a rotten experience, but it's almost 2 years from diagnosis and I feel good. Don't let the size of the tumor unnecessarily freak you out. I had oncotype dx done on my tumor which actually showed a low recurrence score.
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SweetCaroline-my tumor showed 3cm on ultrasound and 7cm on the MRI. My ONC believe the tumor was inflamed as a result of the biopsy done. Had a BMX 2/20 and she was right the tumor was 3cm. So stay strong and positive until you talk to your onc. I know it's hard your mind can"t shut down.
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Just checking on you Caroline...we're here if you need us.
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Mine was 8 cm and it was not seen on a mammogram or ultrasound....none of my nodes were palpable and yet after surgery my tumor was huge and I had at least 17 nodes with cancer.
I am nearly 8 years out and doing well......once you get your treatment plan....and then get it done.....things will slowly get back to a new normal.
There are so many women doing well now even with large tumors so try to relax the best that you can and just prepare to kick the cancer to the curb!
Jacqueline
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Try board
Calling all with tumors 6 cm +
I'm almost 6 too and many here are larger, I did pre chemo to shrink it before surgery, but some do other way around also -
Hi Sweet Caroline,
My tumor was over 8cm and did not even show on the mammogram. Like Sherri and the others have said, you're in the hardest part right now. Chemo before surgery is standard these days for stage 3 gals. I am one that had surgery first, then chemo. Come here often...we get it.
Hugs!!
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Caroline, my tumor is 3 cm so I can't help in that aspect but my BS and MO do neoadjuvant chemo in most cases unless the tumor is very very small. So I may need to hang out with y'all to find some people undergoing chemo before surgery. Hang in there, it is so hard waiting on these appointment during the diagnosis period. And the more research you try to do on your own, the more worried you will make yourself.
(((HUGS)))
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I had a 6cm tumor and one grossly pos node, AFTER neo adjuvent chemo. That was 7 years ago. I'm just fine.
Annaanne
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Yes, my dear, I have BTDT and I am here to tell ya all about it
It is horrible there at the beginning when it seems like a cascade of scary and difficult information. The oncologist should help you by getting you through the maze and settled on a treatment plan.
I had/have ILC. My tumor was large. They never quite decided just how large, but over 5 cm. I had two lymph nodes that were swollen, but none lit up on the scans.
We did 4 rounds of FEC before doing the surgery. I chose a BMX, although my right breast was supposedly all clear. ILC is sneaky and can hide. It is also more likely than IDC to hit the other breast, so I preferred to have it over and done with in one go.
The tumor shrank considerably during the chemo. From 5+ cms it was down to 1 cm by a few milimeters in the path report. It turned out that I had micro-mets in 7 nodes. The node that remained swollen by surgery time did not have any cancer, however. There was stage 0 in the supposedly healthy breast, so I am very glad to have it gone.
After surgery I had 4 more chemos, Taxotere, and 30 radiation treatments. Last week I had my ovaries and most of my uterus removed. The ovaries were removed to cut the estrogen supply to the cancer, the uterus was because of adhesions and fibroids, since we were at it anyway.
It has been quite the ride, but in spite of all the needles, poisons, scalpels and hospitals, it hasn't been a terrible year. I hope to stick around quite a bit longer.
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Mary625, the way my BS explained the chemo before surgery was what you said, i.e. being able to measure the effectiveness of the chemo, but also that when the cancer is that advanced, it is more important to stop it in its tracks than to cut it out.
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