question on tumor size

Anonymous

I can't imagine I'm the only one with this issue, but every oncologist I've been to (four until I found one I liked) has a different opinion.

I didn't have a solid 4cm tumor, but had three little tumors that if you were to draw a circle around them would measure 4cm. The largest one was less than a centimeter.

Some of the oncs consider this a 4cm tumor even though it wasn't all one area, others disregard this and look at the largest of the group of three.

Anyone else with this?  

ruthbru

I had two, which measured together were a total 3 cm, which is the number on all my reports.

dlb823

I actually had 4.  The largest one was 1.5cm, then 9mm, 8mm and 1mm.  The last one was so small, it was only found during pathology.  Anyway, I'd read that doctors total up multiple ones, but when I asked about this at UCLA, after they found the 2nd & 3rd ones on MRI, my BS said, no, they just go by the largest one. 

Other than curiosity and maybe a reason to worry because it's a larger number, I'm not sure how adding them together would change your treatment recommendation, as usually either multicentric disease (which in itself indicates a larger tumor load) or a positive node would probably indicate chemo.   

Glad you found an onc you like.   Deanna

lisa-e

I had two tumors, IDC, in addition to areas of DCIS and LCIS. One of the tumor was 0.8 cm and the other was 1.2 cm.  The two tumors had different pathologies (one was 46% er+, the other was 99% er+, so truly multicentric.  My onc said treatment was based on the largest tumor and recommended chemo.  I declined, based on the oncotype test scores I insisted on for both tumors.   Point is, even with multicentric disease, chemo is not a given.

Anonymous

I'm doing the chemo - no question - starting next week. The issues are more overall prognosis and then this question about radiation, which after a mastectomy is a bit unusual. 

lisa-e

Zachsmom, glancing at you dx line, I can understand why you're doing chemo. But I sure would want to know the reasoning behind your docs recomendation for chemo. The rad onc told me I wouldn't need radiation, based on my tumors location, ie nothing was close to my chest wall & I was nog negative. Could it be the fact that your node positive be reason for their recommendation for radiation?



By the way, I have seen a study that said the progosis for women with multicentric bc is the the same as women without multicentric disease, This study drew the conculsion that it was not necessary to consider the total tumor load, but that it was sufficient to base treatment on the larger tumor. I haven't found any other studies that say otherwise, but that just seems wrong to me.

Houndmommy

I had 4 tumors in the same quadrant of my breast and it was called multifocal.  I had areas of IDC, ILC, DCIS, LCIS.  My pathology report was soooo confusing and I am still asking questions.  They did tell me that they go by the largest tumor which in my case was 1.4cm and was one of the invasive cancers.  My DCIS was 3.6cm but apparently they don't count that.   My onctoype was done on the largest invasive tumor and was 14 so no chemo.  I really worry about the tumor load though, especially that large DCIS.  I had a mx and am undergoing radiation because they couldn't get clear margins.  If my margins had been good, I wouldn't have needed the rads.

lisa-e

I think the definition of multicentric breast cancer is when the cancers are in different quadrents, while multifocal is when the tumors are in the same quadrant.



Houndmommy, as the DCIS and LCIS are not invasive cancers decisions about chemo wouldn't be based on them. However, surgery decisions and radiation decisions have to take in situ cancers into account.

Anonymous

The chemo is because of the node (7mm in the sentinel node, 14 axillaries all clear). I am 46 and premenopausal so they didn't even want to bother with the oncotype.

My margins were clear but very close. I've had all sorts of reconstruction issues and my current PS wants to improve upon the look after the chemo. He's dead set against the radiation for cosmetic reasons and the oncs all want me to see a.....radiologist? medical radiologist? Something or other when the chemo is done. I am so afraid I'll wind up with a decision between lower chance of recurrence and looking deformed.    

lisa-e

Zachsmom, it is rotten to have make such decisions. I suspect your oncs want to you to see a radiation oncologist and that sounds like a good idea to me. I am a firm believer in making decisions based on looking at benefits versus risk. A radiation onc should be able to tell you how much radiation reduces your chances for a local recurrence and you can make a decision. I do know one can get good cosmetic results with reconstruction after radiation. One of my friends had immediate implant reconstruction. She had chemo and radiation as her tumor was close to the chest wall. Anyway, she unveiled the foobs for a group of friends the other day and they looked pretty darn good to me.

Anonymous

But you're saying reconstruction after radiation? Right now I have two decent foobs, but this is where it gets complicated. I had my original (and second mastectomy on 7/1.) I developed a massive cellulitis infection one one side and I had a non-healing wound on the other side. The folks at NY Hospital Cornell wanted to remove both implants until January. Then put in tissue expanders and finally more implants in March. And I completely refused.

So I found one of only two surgeons in the US who does implant salvage. I spent a week at Mt. Sinai hooked up to an IV with two catheters in each breast. Then on 7/26 I had the implants removed and immediately replaced with new ones. They look good but my surgeon (the amazing Dr. Jin Chun) wants to make them a bit larger and create some cleavage next year (fine by me - as long as it's next year).

I can't imagine how I can radiate. When? Before the surgery next year? He says once I do that he won't be able to make them look better. On the other hand, I don't want to die from this. My onc says several of her patients have been radiated with implants and have been fine, but from what I read, it's sort of 50/50. 

lisa-e

My friend had immediate reconstruction, with temporary expanders. Then radiation following chemo. Six months post radiation she had exchange surgery. The results looked good, but she didn't have any complications, as you did.



You started this thread posing questions about the prognosis for pts. with mutlicentric cancer. It seems like you are wrestling with this question as you try to make decisions about your treatment versus reconstruction. I think that consulting with the rad onc is a must, so you can find out how radiation will effect your chances for recurrence and you can make decisions about further reconstruction. I hate that you have to make such decisions.

lago

I too fear I will need radiation and it will compromise my reconstruction (expanders/implants). Bottom line is I am not going to risk my survival for boobs.

Remember that when they say "50% failure" in reconstruction it doesn't mean that they procedure doesn't work. It means that 50% of the time there are issues that need to be corrected with more surgery. It might take a few more surgeries to get it to work when radiation is involved and it may not look perfect but it's not impossible. Ask your PS to show you pictures with patients that have had radiation. If s/he can't do that you should consider a new PS.

I'm also shocked that a PS would tell you "no radiation". This is not his/her call. Also I know my PS is all about treatment first. Treatment should not be compromised for cosmetics.

Houndmommy

You might want to post on the reconstruction thread as I have seen posts by women there that are dealing with rads after reconstruction.  There is a lot of good info in that forum.

 Also, I have an issue with a doctor that is telling you not to do rads because he won't be able to "make you look better".  It sounds like he is more concerned about "his work" than your health.  I feel bad that you have to possibly make this decision, especailly after all you have been through with your reconstruction.  BUT, at least consult with the radiation oncologist.  That doesn't mean you have to do rads.   It just gives you all the info you need to make an informed decision.

Good luck!  Kim

Anonymous

It has more to do with the fact that my PS has sort of downplayed my medical issues. Not sure why exactly. I guess so much of my case is borderline and open for discussion that he tends to focus on the positive.

I will check out the other thread.