Has anyone started a forum for Chemo in Dec 2008?

Firni

Lisa, when I had my surgery they did the sentinel node frozen section.  I was told that if that was positive, they would do a full axillary dissection.  At the time of the Mx.  I don't know why they waited with your sister.  She has enough to deal with without having extra surgeries. 

Congratulations Texas and Grancy!! So good to be DONE.

Simvog I'm so glad you'll be able to go on your vacation.  It looks like there is plenty ahead of you and the vacation will be a nice break. 

Firni

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

lisasayers

Hi Firni

They did the sentinel node dissection...took out two nodes and never did the frozen dissection????  So she just found out, a week later and now needs more surgery!!!!  CRAZY

Firni

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?

lisasayers

I don't know...she isn't like me and doesn't ask a lot of questions.  But she did ask them when she got out of surgery about the lymph nodes and they told her they wouldn't know until they came back from pathology.

At least she had a lot of scans before she started chemo...and they all came back clear!

Firni

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

Bold

Hey Lisa:

That does not sound right. How would they know that she had pos nodes. I had dye injected in my tumor. The dye goes to the nodes that could be effected. I am happy to say only one micro met still considered neg. (just like to say that). Did they do a ultra sound and see that the nodes where enlarged? I don't like this at all. Surgery is difficult enough and risky. I would sure like it if you would tell us there rational. I will keep your sister in my prayers.

I have not posted here for a while but I keep up with everyone. I only have one more to go on the day after easter. Imagine all the hallelujah choruses I will be singing this Easter. Then rads then a year of Herceptin. UGGGGG.

Think happy stuff

lisasayers

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!

havehope

I had sentinel node dissection, but they found only one sentinel lymph node not 3 how my surgeon wanted. He did take 3 nodes out and during surgery the nodes were sent to biopsy-came negative but only one sentinel.  After the results came back the surgeon went and did a partial auxiliary dissection - 5 more nodes. Before the surgery my surgeon told me that depending on how the tumor looks he might have to take some muscle from the chest wall if necessary. The first thing he told my DH after surgery was that the 3 nodes were negative and there was no need to take muscle from the chest wall. After pathology we found out that the other 5 nodes were also  negative , no skin or vessels involvement either.

Sorry for your sister. I wish her full recovery and be strong and take care of you, too. Sometime we forget about us when somebody dear to us is in need.

mmliv

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 

EleanorJ

Lisa, the nodes can look negative but actually be positive when they do the full biopsy. Like Firni, I had micromets in one node, well 2 places say no, 1 says yes. She can have her slides sent to another lab for a second opinion. Also, with the micromets, my onc said that I could probably do either full axilliary dissection or have my arm pit radiated. That's something she might want to check. Like Firni, I'm leaving my nodes alone, especially after Mayo clinic confirmed no nodes involvement. Good luck to her.

lisasayers

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............

Texas357

Simvog, September is when I hope to schedule my other mastectomy too. By then I plan to be back in shape so it goes as easily as the first.

Lisa, that is confusing! Could it be because it was a double, and they didn't want to remove nodes from both sides if they didn't have to because of the life-long issues with blood pressure, blood draws, etc.? That's about the only thing that I can think of ... and that's a pretty weak excuse for sending someone back into surgery again.

CindaD

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.

CindaD

Lisa, obviously I'm not awake yet, after I wrote the above post and submitted, I found that I didn't read the last page and I see you have answers!  I'm going for some caffiene now!

lisasayers

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!

lisasayers

Okay, so my sister called the doctor and asked all the questions I told her to ask.

Apparently Karmanos does not do the frozen dissection because it has too many false postiives and false negatives.

The other reason the doctor didn't do it is because she did not expect them to be positive.

They are going to remove more nodes so they can determine what type of radiation to do.

My sister's surgery is scheduled for the 28th of this month.

Thanks for all the input!

Grancy11

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...

Grancy11

I'm like Cinda, didn't read the last page before posting      but got to say in the research I did do found out the difference in results from frozen section and full pathology was like 3% difference, which doesn't sound like enough to me to warrant not doing SNB, just my opinion

simvog, think of us as you plan and take your vacation, we'll be there in spirit!

 blessing to all,

lisasayers

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.

Grancy11

Lisa - bless her heart...did they find positives on both sides? doing full axillary disection on both sides? how much did the tumor shrink before surgery?

many prayers with you all...

lisasayers

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....

EleanorJ

Well Divas, I'm Day 19 out of my last chemo. Last night, my head became so sentive to touch, I decided to try pulling on the tiny bit of hair I have. Just as I thought, my hair decided they were going to start falling again! Now, my hair have slowly been growing since chemo #2, I kept shaving to keep it clean and last week decided to go for one last shave. HA! So why, after growing back through chemo, 18 days after I'm done chemo, my hair would go "just kidding!"? Just in time for Easter!!!

Texas357

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.

Firni

What the H Caroline?  I know you've embraced your baldness, but this is not right.  I've heard of eyebrows and lashes falling out a month or two after chemo, but not head hair falling out after chemo is done.  

Texas, I'm 17 days out from my last chemo and I'm getting frustrated because my SEs are not gone yet.  Even tho they wouldn't be gone yet if I was still getting chemo.  Try to be patient and kind to yourself with this last round.  

Lisa, I hope your sister is doing ok. 

lisasayers

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!

bobcat

Caroline - my hair did the same thing - started to grow all wispy and when I pulled on it just came out in my hand.  I am shaving smooth until after tomorrow and then I will give growing it in another go round.  My lower lashes have started to come back and I've shaved my legs once earlier in the week but not again since.  Upper lashes are now almost completely gone but I can see the beginnings of new growth - ever so short!!  But I slather on the mascara and use dark brown shadow.

Lisa - my nails never went but now they are feeling all tingly like you and I also finished 2/6 - what is that about?  Good luck and hugs to your sister.

Happy Easter and Passover to all you beautiful ladies.

Texas357

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.

LindaBusEd

Texas357, I have only been on Femara a little over a week. Keep me posted on your SEs. Right now my nails are pretty strong. In fact, I am going to have a manicure and a pedicure next week since I haven't had one in 7 months. Linda

Texas357

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.