Has anyone started a forum for Chemo in Dec 2008?

Lisa, How do they know her nodes are involved if they didn't take any out?

Lisa, could it be that your sister has micro mets in her sentinel nodes?  I had one micro met in one of my nodes.  They didn't find it until they did the full biopsy.  Later, my onc recommended a full axillary dissection.  He said it wouldn't change my treatment if I did it or not.  It was just standard procedure and he had to recommend it but would agree with whatever I wanted to do because he felt it was overkill.  I did not do it.  Maybe she's dealing with that?

I guess she just needs to ask.  At least you can help her with the questions.

Hi Bold

They sent the nodes to pathology after her mastectomy.  I guess some hospitals don't read nodes during surgery.  She had the dye injected as well. 

I just sent her a list of questions to ask...like does she really need another surgery...won't rads take care of it? 

Thanks for the prayers!

Linda - I also started Femara Apr 2nd. So far so good.... I too am waiting for SEs. 

Lisa - When I went in for lumpectomy I was told they would take out 2 sentinel nodes to check for cancer. They would do the "quick" test during surgery and if appeared cancer free, then only do a lumpectomy; but the nodes would be sent out for more accurate testing and if showed cancer then additional surgery would be needed. Could it be that this is their standard procedure? If so, they should have told her that BEFORE surgery.

It is GOOD that you can prepare her with appropriate questions! Hard to make decisions on your treatment when you don't have the info!

1.  Does she have someone going with her to the appointments - helps to have two sets of ears, two sets of questions. New info from doc always created new questions and my DH would ask good additional questions that I wouldn't have thought of. Then the two of us had a better understanding of what was happening.

2.  Next, is her doctor willing to spend the time with her so that she does get the information she needs?

Mary L 

Thanks Ladies

Yes, she has somebody going with her...but they are both laid back and of the "old school" that you don't ask questions, you trust what the doc is telling you. 

I know the nodes can look negative during a quick check, my question was why they didn't they even do a quick check during surgery, as that seemed standard procedure to me.  However I have talked to a couple women who said their nodes were not read during the operation either.

So now I have sent questions to my sister: 

1.  why can't they just radiate the area in question instead of the extra surgery?

2.  what do studies show about the difference in treatment? Radiating versus another surgery

3.  how will my treatment change if they find more positive nodes?  

I'm concerned about them taking more nodes out if studies show that radiation is just as effective.  She has not handled this surgery well and she still has her reconstruction surgery in the Fall.  We already knew they wanted her to get six weeks of radiation, five days a week. 

I just wish I could help her............

Lisa, It sounds as if they had to take at least one node if they are now saying it was positive. When I worked in the OR, we sent the node out while the patient was still under anesthesia to test if it was positive, if it came back clear we closed up the incision.  The down side is that the frozen section is only a quick look and sometimes when the pathologist looks closer and does more in depth testing they find cancer cells.  We did have to bring those patients back.  I always hated that.  But we did tell everyone up front that this could happen.  Cancer just sucks.

Get your caffeine Cinda! LOL

Texas...they took two nodes from each side and I realize that a frozen section is just a quick look and isn't as accurate, I just wondered why they didn't do it all.  But I guess some places don't.

Thank you everybody!

Lisa, the first surgeon I talked to never even mentioned SNB, after my 2nd opinion I asked the first guy about it, he just said he doesn't do it that way, if they find positive nodes they bring the patient back a week later and take the rest out or they just do a complete axillary disection in the first place...one of the main reasons he didn't do my surgery...but he is well-respected by my oncologists and does a lot of the breast cancer surgery in this area, so who can tell?  This was way back when I was first diagnosed and so I didn't even know about SNB until I talked to the 2nd surgeon - does your sis remember if they discussed node disection with her? 

you probably told us and I forgot, but if she had bmx why is she getting rads? 

blessings and prayers and best wishes to her and all your family

Texas - congrats on being able to have the last treatment, hope the shots don't do you too bad 

hoping everyone has an easy week...

Hi Grancy

My sister has ILC and the tumor was 7 cm.  She had neoadjuvant chemo, now the bilateral and needs radiation because muscles were involved.  Before the knew about the nodes, they were already planning on giving her 6 weeks of rads, 5 days a week.

Just positive nodes on the cancer side.  They told her today they would be taking about 1/3 of her nodes in her next surgery.  The tumor shrunk quite a bit...to the point where they couldn't feel it before surgery.

Thank you for the prayers....

Caroline, that's too strange! You'd better sit your body down in front of a mirror and explain that you FINISHED chemo.

I'm 3 days pats my final chemo and today was my crash day. Each time I tried to get up and get something done, I crawled back in bed again instead. So glad that this is the last time.

Hey Caroline...sorry to hear about the hair.  I'm experiencing something similar with my nails and I finished chemo February 6th.  So it is two months out and my nails feel like they are about to fall off.  Not all of them...the just three on each hand, from my middle finger to my pinky.  I've cut them short so I don't catch them on anything and I'm hoping there is a new nail growing underneath! 

Firni...my sister is hanging in there.  Her next surgery is on the 28th....just pushes everything back for her.  Thank you for asking!

Happy Easter everybody!

I've got two fingernails taped on, with more that will need it soon. The rash on my face has made my eyes almost swollen shut. And my dry mouth is so bad that the only thing I didn't choke on last night for dinner was about a 1/2 cup of cooked spinach and a jello cup. I missed enjoying Thanksgiving, Christmas, and my anniversary dinner. Unless a miracle happens, I'm going to suffer through Easter dinner too.

People keep congratulating me on getting through chemo. I tell them I'm not through it yet -- it's just the infusions that have stopped.

Linda, I'm nervous about aromatase inhibitors after having all these side effects from chemo. I don't know if I'm starting on them in a few weeks or if I will need to wait until after radiation. How did you choose the Femara vs. the other two?

I'm also anxious to get my teeth cleaned but that's not going to happen until this mouth problem goes away.