multifocal cancer

jrgolomb

Yeah, when I was dx, it was a thickening that prompted the mri. I take taxoxifen for two years then switch to something else that has shown to be more effective for the long run. 

Lisa S--What did you decide to do about the chemo tx?  It can be a toughie. 

Lisa_S

Thanks for asking, Jess.  I haven't made my chemo decision yet.  I should get my pathology results Monday or Tuesday and then I'll discuss it more with my oncologist.  Assuming the sentinel node remains negative, we'll do the oncotype testing and then I'll make my decision.  Given my intramammary node involvement and age (41), it seems like it would be prudent to do chemo, but I do want to hear what the oncologist has to say.  I'll keep you posted.

I'm also ER+, so I'll be taking tamoxifen as well.  You mentioned that you'll take tamoxifen for 2 years and then switch to something else.  I thought that it was a 5 year protocol.  What will you be taking after the tamoxifen?

- Lisa

jrgolomb

Lisa---I will take an AI called arimedex, I think.  I think it has shown better results compared to tamoxifen and has been better with bone density issues as well.  I am taking taxmoxifen because I am perimenopause and I need to clearly be in the menopause mode before I take the AI-aromatase inhibitor.

You look to be right about on the same schedule as I was- only a year later.  My thoughts are with you.  Let me know how it is going.

cjo

I am glad for this thread.  I have multifocal tubular cancer and had a mastectomy in September (recommended over a lumpectomy due to difficulty reading my imaging).  I am more than a little confused by the pathology report - I am not sure where the second focus of the cancer is.  Emotionally I guess I would like to understand that.  I know my oncotype test result (score of 15) and I'm waiting for my genetic tests.  I see the oncologist on Friday. 

I have been wondering how being multifocal affects my case and it doesn't seem very clear.  It is nice to read about others in the same situation.  

jrgolomb

cjo--I know exactly what you mean about the confusing aspect of the pathology report.  I had to read it many times before I figure out where the tumors were.  Inner, outer, upper, lower -medial ....all that I had to look at diagrams to realize the location and size of them all. I also had tubular-that is the first one they found...then the mri picked up the rest which was the final clincher on the mastectomy.  The PS was very firm on that.  I think the more scattered the tumor/s are , the more reason the push for the mx is.  I know exactly what you mean about knowing what is going.  It is so confusing at times. 

I had a unilateral mx- a decision I ruminate over as I wait for my exchange and then wait for the mri on the "good" breast. 

You have come to a great place for information and input.  Lots of smart folk on the board.  Hope all goes well with your oncologist. 

CoolBreeze

Everything I read says multifocal doesn't affect treatment decisions or staging, mostly just surgical care.  Standard of care for multifocal is mastectomy.  It doesn't seem to have anything to do with chances of getting it in opposite breast, for those who are unis like me.  

*shrug*  I ended up with 3 areas of IDC (one 3.4 cm) along with intraductal carcinoma and invasion into the lobules.  The section of my path report that described my cancer(s) was a full page long!   However, I had no node or vascular invasion, which definitely surprised my doctors.   I'm doing chemo because I'm HER2+ with a larger tumor.  

Don't know about rads yet- looks possible due to a close margin.   Good luck to all my multi-cancer sisters.

Luah

Just to add, lumptectomy is not contra-indicted for multi focal if the tumours are fairly close together and can both be removed with intervening tissue leaving a reasonable cosmetic result.  Mine were even, technically, in different quadrants but close enough together that my BS could get around all of it.  

CoolBreeze

True, Luah, my doctor told me the same.  Unfortunately, mine was too extensive.  

Interestingly, my smaller invasive cancers didn't show up on any imaging studies, so without the decision for mastectomy, they might still be in there.  Or, most likely, I would have ended up having two surguries.   It all turned out for the best, for me anyway.

jrgolomb

The cancer I had did not show up on the mammograms-only the mri. 

nmi

I need advice. I too have multifucal cancer. 2 IDC. After MX path report showed ductal carcinoma in situ, atypical ductal hyperplasia, and other stuff. er and pr +, her2 -  The pathologist ran the fish test, Which came back nonamplified. When i got onco scores back, her2 was neg on one tumor and neutrual on the other.The oncologist is having them run the tests again. When I look at the report, it actually looks like they only ran the testing on one of the tumors. It's late and I may not be making any sense.  It is important to have some understanding of those path reports.

This is my question: when I was first diagnosed, the breast center scheduled me for a breast MRI. When I went to see the surgeon, he cancelled it, saying the MRI are give too many false positives. He scheduled me for a PET scan, which I had. The Pet scan did not even pick up the breast cancers that I had.  So now I am wondering if I should go ahead and have the MRI.  Guess I wonder if something is in my remaining breast.  Although, I have been told statistically it is unlikely. My oncologist said I should have MRI for my peace of mind (he is so nice) I hate being a baby!!! Should I????

jrgolomb

I am a year out from the mx and will have a mri of the other breast and of the implant when that is completed.  My BS, oncologist and PS feel the mri is the best way for me to go since the mammograms didn't pick up my cancer at all. If the mri will give you a peace of mind, go for it.  I don't blame you .....no stone unturned kind of thinking is where I am at.

Lisa_S

My philosophy is that you should push for any of the tests that will give you peace of mind.  My surgeon didn't think I needed a PET scan, but my oncologist thought it would be a good idea, so I had that done.  I was having headaches and pushed them to give me an order for a brain MRI (everything is fine there, by the way).  So you should definitely go for the breast MRI, if your oncologist will write the order.

My surgeon recommended a breast MRI for me because my breast tissue is fairly dense and hard to test with mammogram.  When I had my breast MRI they discovered 2 additional areas of concern.  One was additional cancer in a lymph node (confirmed in a biopsy).  The other was a false positive confirmed by another biopsy.  I was still able to have a lumpectomy with 2 cancer locations in the breast since they were fairly close together.  But I'm glad I knew that the second area was a problem so they could deal with it right away.

nmi

Thanks so much

jrgolomb

You are very welcome.  I am glad my oncologist told me because I had a multifocal situation that he highly recommended chemo. 

nmi

I also noticed in my path report, there is dcis, intermediate grade. Surgeon or onc never mentioned anything about this to me, but I wonder,( and I know I should ask at my next visit) does this come into play at all in treatment?  I don't think it was tested for er or pr. and to grade is higher than my IDC. I know it wasn't invasvise but why are so many woman with dcis treated with chemo if it is a pre cancer and the cells have been removed through lump or mx? What would be the difference in their case and mine ? Any ideas or do I need to simply ask my Doc?

jrgolomb

Yes, those are good questions to ask.  Let me know what the onc says.

krcll

Bump

jrgolomb

Hey krcll!  Thanks for the bump!  What is going on in your life these days?  I had 3 Fec and 3 taxotere....I hope that does it!  How about you?

krcll

I had FEC100 x 4 and Taxol x 12 and now am on Tykerb for a year (ALTTO trial to see if it is better than Hercaptin). I was done with Taxol in March and rads in May. I was surprised how quickly I felt better and though I realize I do have a "new normal" (*wow* on that AI muscle/joint stiffness!) I am just so grateful that I don't have any lasting SE's. Of course, I worry more or less non-stop about every new little pain I have, but until a doctor tells me that I really have something to worry about, I'm just going to believe that I am a hypochondriac ;-) All in all, everything I was scared about this past year was more do-able than I thought.

jrgolomb

Wow, Fec X4.  I will never forget that taste in my mouth.  I will forever hate Vitamin D water and Jolly Roger candies since I drank/ate them to get through the tx. 

I know what you mean about worrying.  I overdid it exercising last week and I woke up with muscle/rib pain and automatically thought oh no!!!! 

I am so glad to done with chemo tx; now I am taking tamoxifen.  Hope it keeps me NED!

jrgolomb

Hi multifocal friends!  I am checking in to see how everyone is.  I hope all is well.  I go for the second phase of the six month check up- the blood work and discussion about any new aches and pain.  The first phase- the yearly digital did not show anything of concern, nor any changes.  I asked him to clarify.  I was told about that the first time--- a Change in the mammogram., but nothing of concern.  Well, it ended up being multifocal breast cancer.  Now I get the mammogram and wait at the office for the results.

krcll

Hei Jess! I'm fine. I was on the ALTTO trial, which is testing Tykerb (also called Lapatinib) against Herceptin. It turns out that my arm, Tykerb only, was stopped early because they were having too many "events" (recurrances I assume) on it. So all of us on the arm have to start a whole year of Herceptin even if we were long done with chemo (I was done 18 months ago). I was first very upset about the Tykerb doing badly because I was always worried about being on that arm. But then I realized I really come out ahead, being able to take both drugs in the end. I've had 2 Herceptin infusions so far and have hardly any SE's.

I know what you mean, Jess, about worrying over check-ups. But as my onc said to me, "we really aren't worrying about recurrance in the other breast. It's elsewhere we worry about." I try to remember that when I'm nervous for the mammo or think I feel a lump. Do you know if we have a higher chance of a new primary in the other breast? I mean, with multi-focal BC we have proved that our breasts are good at making cancer...

Also, I've been wondering, would the blood work at our check-ups show if we had gotten mets or is it just to keep track that we have recovered from our treatment? I mean, if it doesn't show anything, then there is no need to get nervous about the appointment. But then the only way we would know that we had mets is by symptoms and I'm already convinced nearly daily that my cough or my sore back or the bug bites on my neck etc etc are mets....... I'm getting better though with the 2 week rule and not letting myself worry until something gets worse. 

Jess, good luck with round 2 of your check-up and report back. I'm also wondering how our other mutil-focal friends are doing.

jrgolomb

I know what you mean about the bloodwork as well-  What is the onc looking at?  I will ask him and ask for clarification.  I don't quite understand why  I also wonder if the fact of being multifocal raises the risk, and when I ask the doc always says I am rated according to the largest size of one of the tumors.  I guess I don't understand why that is so- I had five tumors , and I was sure they would put me into III a or b, but they rated me at IIa/b and that was because of the positive node.  Maybe you have a better understanding and I am missing something. 

Yes, I hope to hear from others as well!

krcll

Jess- There is a discussion on the stage III forum about multifocal and survival. Why don't you come and join? http://community.breastcancer.org/forum/67/topic/776945?page=1#idx_14 We are all trying to figure out how much difference it makes....

jrgolomb

I'll go there!  Plus, I hope to hear from more of our Multifocal friends

LuvLulu07

Hello All -

New to the group.  Multi-focal was mentioned with an MRI, as 2 lesions were found.  Biopsy showed DCIS as well as IDC.  I'm not sure what qualifies as multi-focal, I guess BMX this week will give the final story.   

So ready to give these puppies away - they served me well nursing 2 kids, but the message is loud and clear that it's time for them to go.  Anxious to get on with surgery.

jrgolomb

Hi JoyH1109-- I understand multifocal to mean tumors in more than one location/quadrant in the breast.  How are you holding out?  I know what you mean about "giving the puppies" away.  I was ready and anxious.  The wait seemed to take forever.  When ever there was a glitch- like the nurse navigator forget to give me a ekg test, I would freak.  I was so happy to have the cancer outta there!  I went back and forth with getting both taken off and then eventually decided to go with just one.  I spent time talking to the BS , and a psychologist about whether or not to take both- The "team" I worked with prior to surgery were very hlepful.  AND of course BC.org ladies.  Their input, ideas and opinions helped to decide. 

At any rate, come and visit anytime.  It is nice to hear from the multifocal group---rare as we are!

LuvLulu07

jrgolomb -

So it seems that I do have multi-focal, since tumors are in 2 different quadrants of one breast. From my diagnosis to surgery date, it will be almost 5 weeks - a really long time to wait!  I am doing okay - just ready to get this over with.  Thank goodness my hubby arrives today and will be with me for surgery and a few days afterwards.  

I didn't realize that mulfi-focal BC was rare?   When was your surgery?  Did multi-focal decide the course of treatment or the MX procedure?  

Wishing you continued health.  I'll check back after surgery. 

  

geewhiz

Good luck with your surgery Joy...from another multifocal/multicentric gal!

jrgolomb

Joy-- I guess I read it somewhere that multifocal is rare.......Perhaps we could build this up and have our own section!! lol

Good luck with surgery, and hopefully you'll come back soon.