My tumor seems to be growing fast?

SusanB12

I was diagnosed with ILC of the left breast a month and a half ago almost two months. Went once to see the surgeon he recommended mastectomy, that was a month ago, in the mean time I had an MRI and an MRI guided biopsy on the other breast which took forever. I was supposed to be going in for surgery on the 29th. This week however I made an appt with an oncologist and fertility doctor at the same hospital my surgeon is at. When examining me she seemed to believe the tumor had grown quite a bit since I saw the surgeon and she thought chemotherapy should be administered first. The surgeon was out of town this week so next week they are going to discuss this and see what needs to be done. I have another appt to see the surgeon next week as well. In the mean time the oncologist ordered pre-tests for the chemotherapy treatment. Does any of this make sense?
I'm freaking out this is taking so long and nobody has even treated me yet meanwhile this is growing inside of me at a rate of which I have no idea.
Any opinions or suggestions on this???
thanks.

nash

Does she mean it's grown since the MRI? Does she have an idea of how big it is based on palpitation? If so, does that size correlate with the MRI? Did the surgeon say how big it was based on palpitation? Has the oncologist felt it twice or is she going off of what the surgeon told her? I guess my point here is--has the same person felt it twice and decided it's grown?

My onc had wanted neoadjuvant chemo based on an MRI which turned out to be overstating the tumor size. I went with my surgeon's opinion based on feel and opted for adjuvant chemo. My surgeon's argument against neoadjuvant chemo in my case was that since there was a question as to true tumor size, doing chemo first would destroy the true picture of what was going on. Node status would be lost, and in my case I would have ended up having a lot of axillary and chest wall radiation that I wouldn't have needed b/c they were playing it safe not knowing exactly what had gone on before chemo.

That being said, neoadjuvant chemo may be the right way to go in order to shrink your tumor down and possibly preserve the breast. I don't know, but it's important to get the surgeon and oncologist on the same page and see how certain they are about the size of the thing.

Do you have your pathology report? Check it and see what grade your tumor is. Unless it's grade 3, or its mitotic count is high--2 or 3--I can't imagine it's cranking along at such a rate that it's changing from week to week. Obviously I'm not a doctor and have limited experience with this, but just my thoughts.

Good luck--I hope all turns out well for you.

wallycat

I wonder if you've had bruising or something from the biopsy.
I agree with Nash...ILC tends to be a slower grower (tho not always of course).
My MRI led my surgeon to think it was 9mm but he could not feel anything...AT ALL ....after surgery he found 1.8cm...so if he went by MRI he would be wrong and if he went by feel I would have been sent home.
I don't think they know the size of the actual tumor till they take it out.
If you want the mastectomy or the lumpectomy, it should tell you the exact size of the tumor.
MD Anderson did a study showing that lobular is less responsive to chemo ...
I guess I would find a doctor who I trust, ask their opinion as well.
I am also not a doctor but until they do a SNB, they have no idea if there is node involvement.
If you are leaning towards a mastectomy, who cares how big the tumor is before surgery as they are taking everything out. If there is no node involvement and pathology is good, then you will relax.
If there is node involvement, chemo will be recommended regardless of the tumor size you end up.

I hope someone smarter posts a better response....

Best to you!

talktome

I think that your onc is wise to test for a chemo response if that's what he is doing. ILC does not respond to chemo v. well. I am frustrated that no trials have tested withholding chemo for ILC. I am undergoing 6 TC's and worry whether they are helpful. I have all the side effects including itching like crazy all over which is a rare sensitivity to TC. I don't have the link but if you google "Does Neoadjuvant/Adjuvant Chemotherapy Change the Natural History of Classic Invasive Lobular Carcinoma?" you should be able to locate it

SusanB12

The original ultrasound said it was 1 cm, the surgeon thought it was 4.5 cm, and the MRI report did not state a size which I know is unusual. This might be because it is in three different regions. The oncologist though it was 7.5 cm. and that by shrinking it you could preserve the breast tissue. The copies of the reports I have no where state a stage or a grade. The surgeon and the oncologist only examined it once. I expect the surgeon to examine it again this week. This is all very confusing and scary.
thanks.

nash

Susan, I would hold off on any decisions until the surgeon reexamines you. You may need neoadjuvant chemo anyhow, but you need more information to work off of at this point. I had 4 different estimates on size of my tumor based on different imaging used, and the tumor ended up being the size the surgeon thought it was based on feel.

Best of luck, and keep us posted.

SusanB12

Thank you all for your replies. I will let you know what the surgeon says this week. I have to go for a heart scan on Monday in case I need chemo first. Since last Friday I've been having strange like muscle pulling sensations near my clavicle and throat on the tumor side. The oncologist said it could be because the tumor is growing. I get very tired at the end of the day and just find it helps to lay down. I keep asking myself why anyone has to go through all this stuff.
thanks,
Susan

marshakb

Hey Susan, I had a muscle pulling feeling also at dx before surgery. Mine was a pulling from the shoulder under my arm. It was explained to me the tumor could be could be sitting above a tendon, crowding it. Best of luck next week, and let us know! Marsha

suzfive

Susan,

That's weird, I was diagnosed with ILC in December 2005 and for several months before diagnosis I too had the same pulling sensations near my clavicle and throat. Haven't had them since the surgery. Never connected that they might be due to the ILC.

Hope you get everything straightened out next week. Suz

SusanB12

Does anyone know if ILC is the same as other cancers as far as the chemo first treatment working just as well? Does the chemo first always work?
thanks.

mkl48

Clarification on MD Anderson. Cristofinelli's research suggested that the neoadjuvant response to chemo was not as prognostic as in IDC. He may be using a different chemo pattern. Some are using AIs as the first intervention in lobular.I know one of his patients who had Taxol first and then FEC and he was insistent that that be the pattern. Beth

SusanB12

Monday I had surgery on my lymph nodes, a biopsy of the cancerous breast and a port placed on my right side. I go to see the oncologist tomorrow to find out about the chemotherapy. Under my arm and all around the incision to the lymph nodes is numb. I'm assuming this is normal? How long until the feeling comes back? We are not sure that the "chemo first" is the way to go. Part of me is wishing they would of done the mastectomy and got it over with. Now there will be more surgery. A friend of the family who is a doctor is concerned also that this is not the way to go and also the MRI guided biopsy on my right breast is not sufficient enough of a sample to rule out cancer of my right breast as well? Does anybody have any information on this?
thanks.

nash

Thanks for the update, Susan.

The numbness is normal. Mine is much better six weeks post-op, but it depends on the person. It's a really strange sensation in the beginning.

I'm not an expert on biopsies, but I think the core biopsies are fairly accurate. What did the biopsy report on the right breast state?

marshakb

Susan, I'm confused. If they have told you mastectomy anyway why are they doing chemo first? I absolutely would insist they get that tumor our FIRST! There are some studies that show chemo is not that effective on Lobular Carcinoma. Usually chemo before surgery is to try to save the breast, shrink the tumor in order to do a lumpectomy. I'm not trying to tell you what to do, but if it was me, I would insist they do the mastectomy first and get the cancer out of your body. ESPECIALLY if they think it is growing. Hang in there, it is so hard to make these decisions. I had a single mast done in Dec and am now having the suppose "good" breast removed Oct 1. The tumor was pleomorphic which is considered more agressive and the thought of doing chemo and rads again just is too much for me. Hugs to you, let us know what is happening, Marsha

shrink

Locally advanced lobular cancer is one of the cancers in my right breast. Neoaduvant chemo was prescribed to reduce the 6 cm tumor so that there would be cleaner margins. So far, it's shrunk by half. I'm due to start Taxol next week and surgery in November.

conniehar

My lobular tumor was huge - 10 cm. My onc gave me a choice of chemo before or after, but he was swaying towards chemo after. He discussed with my surgeon who was adamant that I get the tumor out first. I also just wanted it out. I did get clean margins.

SusanB12

Nash,
The MRI guided needle biopsy with vacuum assistance, on my right breast showed it was a radial scar. It wasn't a core biopsy guided by ultrasound which I believe is more accurate. The biopsy I had is relatively a new procedure.
The doctor friend of the family believed they should do a surgical incision of that breast and the surgeon's physician's assistant said they sometimes do that as well, but my surgeon never mentioned anything about that, I'm assuming he was confident in the results of the MRI guided biopsy. But do I take that chance. I'm supposed to start chemo on Friday, if he was going to biopsy the other breast he should of done it last Monday when I had my surgery.
I have a second opinion scheduled with only a general surgeon on Tuesday, but my surgeon at the moment is a breast surgeon. This seems to get more and more confusing as you go and from reading everyone's posts it doesn't seem like two different people have the same course of treatment.
It just seems like everyone should have the same steps to follow,it would make it easier on all of us, but obviously it doesn't work that way.
Susan

SusanB12

I'm wondering if the size of your tumor in relation to the size of your breast has to do with whether they recommend chemo before or after? My tumor is 6cm and my cup size is a B cup. I think my breasts are relatively on the smaller side.
Susan

marshakb

The tumor in my breast was 5 cm in a b size boob. I had the mastectomy first and then chemo. The surgeon got a good 1 cm clean margin. He didn't think there was node involvement but turned out one of 13 had microinvasion (5 mm) He was pleased we had done the surgery first, that node could have spread further if it was in there longer.

Good luck Susan. It is hard to know what is best, just go with your gut! Marsha