2010 Sisters
Comments
-
Hi everyone,
I was diagnosed around 5/15/10, lumpectomy with SN biopsy 6/10/10 and I'm supposed to start taxotere/cytoxan chemo tomorrow. I'm so surprised to hear that so many people have been able to consult with dietitians, exercise & wellness people! I've also heard about chemo classes! I haven't been offered one single thing like this. I had to call the other day to ask if someone needs to drive me and another time to find out how long it will take. I feel like I don't know anything and I'm just walking into the dragon's mouth tomorrow - blindfolded! I live in Atlanta! I know we have these things somewhere! My first appt with the medical oncologist was all wrapped up in seeing if I wanted to participate in a clinical trial. Same thing with the 2nd and last appt, so maybe that's where I got thrown off the train. At least I have been able to learn a lot from these boards. I would skip the whole chemo thing if it wasn't for a few indications that the cancer was aggressive. I did come back HER2- but that was only after the first one was positive so they did the FISH test, where I think it came back 1.1, whatever all that means. Plus, poor differentiation and grade 3, and after reading about ports here, if I walk in and they say, "Time to put in your port", I will say buy-bye....You women are extremely brave. I was going to say I couldn't do it but I guess you do what you have to do...still, I am in awe of all of you. I'm already a hairsbreadth away from saying, this is enough!
0 -
MrsNice - I had a micromet in one node and my docs chose to let the rads treat the axilla. My tumor was grade 2 and I had a low OncoType so I chose no chemo. With your grade 3, they may want you to do chemo but you could ask for an OncoType just to see.
heartandsoul - I agree. I would love to have an integrative dr, a naturopath, etc, but I guess we're in the dark ages here in the south. The TC chemo is well tolerated by many women. Check out that thread on the boards. They have great tips on what to bring and how to cope. Best of luck to you and keep us posted on your progress. We'll cheer you on!!
0 -
Hi Ladies!
I had a lumpectomy with SNB and AND in April, then, due to dirty margins, a lmx on May24th. I have been reading the wonderful posts here for a few days.
heartandsoul-->there is a site called chemocare.com where you can look up your type of chemo and get a good idea of what some of the side effects might be. Just realize you may have some se's but not ALL, so don't be too worried! Your chemo nurse will probably go over everything with you at your first chemo. With Cytoxan, the most important thing is you HAVE to drinks TONS of liquids the first 24-48 hours to flush it out of your bladder. My nurse told me I should be peeing once an hour. It can cause bladder irritation if you don't. And don't rule out a port! I know there are a few who have had problems, but the majority of people with one are thankful they have it. I've had mine for over a year, and have had only a few minor problems. It all depends on how many treatments you have, and whether or not you have good veins. Let us know how your first treatment goes, as I'm sure we'll be thinking about you!
Mrs Nice--> Sorry to hear you had some bad news
Keep us posted on what you find out!Tina
0 -
TMarina - I just had to laugh at the phrase "dirty margins". I know it is the opposite of "clean margins", but I hadn't seen it before and I had to laugh. It sounds like the name of a strip club!
0 -
Hi all--Had partial mastectomy and sentinel node biopsy yesterday. Feeling OK, pain is not too bad, I can move my arm pretty good. The sentinel node injection did hurt but was got through it. The nurses were great--they talked me through it the whole time. The surgery went well. I had hard time with IV line (had same problem with my radical hysterectomy)--they had to try 7 times--then they gassed me out--then the IV was put in without feeling too much pain. Woke up bandaged like a mummy. Now the waiting--until meet with Dr in 2 weeks for pathology. Fingers crossed.
0 -
Hi Everyone!
I was dx'd 4/26/10. Had a unimx (rt breast and will do reconstruction later, maybe) and SNB. My initial biopsy said IDC but when they removed the breast they found IDC and ILC (as well as LCIS and DCIS). My nodes were clear and my oncotypes was 14 so no chemo but my margins weren't clear both near the skin and near the chest wall so I'm getting rads (started those yesterday). After that it will be on to Tamoxifen.
Nice to meet all of you. Sorry it is under these circumstances.
Hugs, Kim
0 -
hi all
i dont know how i missed this board...went for mammo in nov.last yr.after 2 surgeries,2 diff.drs.i petscan,and mri I STILL DONT KNOW EXACTLY WHAT I HAVE..I am a 2010 girl however.first surgery was in april.sorry to see some people i know on here. I also noticed a lot of IDC,ILC,DCIS &LCIS..all around the same time????? gentle hugs sisters.lets have a group huggggg.
0 -
Hi Tina!
You were absolutely right - the chemo nurse explained everything very thoroughly to me, and in fact gave me printouts from chemocare.com! So, I made it through my first chemo session today, and I survived. Boy - I was so nervous and wasted so much energy worrying - about not so much. Actually, I was going to say "worrying about nothing", but we all know that is not the case. Still, it wasn't too bad. I imagine the worst part is coming up the next few days, though. But just the relief of knowing what to do now and how to prepare for my 3-hour visit is enormous! My veins are not so great, but I only have to do this 3 more times so no port, thankfully. I was soooo worried about the Cytoxan because I've been having bladder pain since February. Just when the ob/gyn got through running all their tests, they said I would need a complete abdominal scan, and the tumor popped out of my booby! So, I was told to deal with this first. Now I find out my chemo includes something that aggravates the bladder! So I talked with the doctor before the chemo, and she said it would be okay to go ahead with Cytoxan, plus she gave me a prescription for Pyridium, the stuff that soothes the bladder lining and turns your pee orange. So, I'm also doing what you said and drinking TONS of liquid. So far, so good. That's all I can ask for, one day at a time and all that other good stuff we've been taught our whole lives. I'm so happy now that I made it through the first one.
Barbara, I did get good tips from that thread - invaluable! I found out that we do have the nutritionist and a counselor here, but they were so vague about it, I think they're hiding them on purpose! But, the room where you get the chemo has a big window that looks out on a small, country-looking church and I thought that was so peaceful and was appreciative of that attention to detail, so I'll forgive them for the "hunt for the evasive nutritionist", but I'm going to find her!
Ugh, Rachel! Glad the surgery is over. As bad as that was, all this waiting stuff is worse! I think my whole process from me finding the tumor to finally starting chemo today moved slower than the government. Come get this done, find out next week. Now do this, find out in 2 weeks. Make an appt with radiologist next week, and onco the week after. Get their heads together. I found the tumor around Apr. 25th, mammo Apr. 30th, surgery finally June 10th after half a dozen confirmations done, chemo finally July 20th. It's crazy, so I just rented a lot of Netflix movies to keep my mind off of the worrying. Hope it's good news in 2 weeks - like my ex-husband used to say to me all the time (which annoyed the crap out of me, but he was right), think good thoughts and everything will all be alright. Oh, wait a minute, I remember now, he used to say that to try to get me to go to sleep - haha. Men!
Hi Kim! Sounds like you're well on your way, and it sounds like a great path to be on. Like you say, sad to have to meet this way but it's so good to meet you and everyone else! I guess I'll be starting my rads around the end of October. I heard a good cream to use to minimize burning and to actually keep the skin looking beautiful is something called "My Girl's Radiation Cream" which I think can be found at the health food store. I think I'm going to try that, so many good reviews about it.
Haha, Lisa! "Dirty Margins" sounds like a movie to me, starring...hmmmm...maybe Matt Damon.
Grannydukes, I hope they can eventually get it right for you! Of course, I'm never too sure about anything they say, anyway...
You're absolutely right - a group (((HUG))) is a great idea!
To paraphrase "Hill Street Blues", watch yourselves out there, ladies! I'm so distractible, but this is a time to stay clearly focused and don't forget the details. Arrgh! I hate details!
0 -
Hi, I am also newly diagnosed in June, 2010. I have a lumpectomy scheduled for next week and then a port placement and start chemotherapy. There was some discussion about doing chemotherapy first before the lumpectomy. However we decided to do the surgery first so that the cancer could be accurately staged from the lymph nodes. Did you get offered chemotherapy before surgery?
0 -
Omaz,
I'm glad you brought up whether you SHOULD/SHOULDN'T do chemo before surgery. I guess my concern is if they can accurately stage the cancer if they do chemo before surgery rather than later. Do they take out the majority of the lymph nodes? How do they determine how many they will need to remove? You have the same type of cancer as my mom (IDC ER+, PR+, HER+, 5cm) so I am wondering if my moms treatment will be similar to yours.
0 -
Glad to meet you Jaim1123. My daughter is 14 and is a big help to me. It is great that you are helping your mom!
The radiation oncologist felt it was important to stage the cancer. Apparently the chemotherapy first can make cancer cells in the lymph nodes 'go away' and make the staging based on negative nodes that may have been positive in the beginning. That is my understanding. What have you found out so far?
0 -
Happy Hump Day!
Well, I'm sitting at home wondering if I will really get to have my 3rd surgery tomorrow. My family has passed around this nasty cough/cold bug, and now I've got it. It started as a tickle on Monday, was a little bit more annoying yesterday, but is now a full-fledged chest cold and slight head congestion. No fever though. I've left a message for my surgeon's nurse to see if they want to reschedule; I'm hoping not only because my surgeon is going out of town for a week and a half, and I don't want to delay surgery 'til she gets back. Anyone else have any experience of having surgery when you have a cold??
0 -
hump day is right
went for pet scan came back clear.b/l mri clear.yay but lymph nodes have to be removed.3rd.surgery.forgot to ask how many nodes are they gonna take out now.the nodes are infected.i was waiting on pins and needles for the results now that i have them im not a happy camper.im not afraid of the surgery but now she is talking chemo and rads....NO WAY...im 69 yrs old.my body feels like 100.i think the chemo and or rads will kill me before the c will..what do you think girls??????????help
i need a hugggggg
0 -
Hi, I don't have any experience exactly, but if you are sneezing after surgery that could really hurt!
0 -
Omaz - good point!! Although they have good drugs for pain. I'm more concerned about it being that much harder to recover (I don't bounce back as well as the average person), or making me more susceptible to some other infection. No sneezing yet, but coughing. Which brings on the stress incontinence so I'm coughing/peeing all at once!! ICK!
Grannydukes - I don't think they can tell an exact number of nodes until they actually have them out. My understanding is that the nodes are sort of clumped together in a ball of tissue; everyone is different in that you may have 5 nodes in the tissue, and I might have 12, or some other random numbers. My surgery tomorrow is for the same thing - they want to be sure the nodes are clear which will help them determine if chemo will be beneficial. The oncotype test helps them determine that as well. Have they sent your tumor for the oncotype test yet?
0 -
Hi MrsNice,
Do they do the oncotype test on the actual tumor when it is removed? I haven't had the oncotype test done and no one has mentioned it, shoudl I ask the surgeon for it today when we meet? Thx
0 -
Omaz - I think the Oncotype test is done on the tumor; not sure about lymph nodes. YES you should definitely ask your doctor about it. It helps them determine whether chemo will benefit you or not. No sense in putting our bodies through toxic chemicals if they are not going to have a significant impact on our chances of recurrence and/or survival.
0 -
http://www.genomichealth.com/OncotypeDX/Index.aspx
Here is the website for the company that does the testing . . .
0 -
I DO HAVE MY PATHOLOGY REPORT.ALL IT SAYS IS LYMPH NODE LEFT AXILLARY NODE EXCISION BIOPSY.METASTIC CARCINOMA CONSISTENT WITH BREAST PRIMARY.EXTRANODAL EXTRANODAL EXTENSION OF TUMOR IS IDENTIFIED.
I STILL DONT UNDERSTAND WHY HE DIDNT TAKE MORE NODES OUT DURING THE FIRST SURGERY...PONDER THAT...MY MIND IS GOING IN PLACES WHERE IT SHOULDNT...
0 -
Hi Omaz,
Thanks for the info! I will add this to my list of notes I have for our first oncologist's meeting next week. At this point we know the following:
5cm, PR+, ER+, HER2+
The MRI showed that it is multifocal (does this always mean multiple tumors?)
One known lymph node infected (you don't really know the # of nodes until the remove them right?)
What do you know about the combination (PR+ ER+ HER2+)?
Again thanks so much, everyone is so incredibly supportive of one another here, I love it!
0 -
Hi Jamie,
As I understand it (please correct me anyone who knows more!) the HER2+ is a kindof mixed blessing. On the one hand being positive can mean the cancer cells are more 'aggressive' but on the other hand they can be damaged more easily with the medication called Herceptin. Herceptin seems to be a very targeted medication that helps kill the HER2+ cancer cells. I think the ER+ can also be good because the doctors can prescribe hormone therapy that will keep these cells from growing.
0 -
{{{{HUGS}}}} to you grannydukes. I know it is difficult to have all this stuff done, and wait, and wait somemore.
The sentinel node biopsy is purposely designed to remove only one or two clumps - the theory being that if nodes were clear, then the patient is spared the more complicated axillary surgery which carries a bit more risk of lymphedema afterward. If any of the sentinel nodes shows cancer, then there is reason to do the full axillary (armpit) node removal. So, although it seems like nonsense to not take more in the first surgery, it's really a way of reducing risk. I'm in the same boat as you; but I'm glad my doc wants to find out more details before sending me on the chemo path.
0 -
Yes, like I said this whole process is slow, slow, slow! But, even though it's torture, I guess I prefer to have them remove as little as possible to try to lessen problems down the road with something else. Mrs. Nice, when I had my surgery coming up, I felt they were skipping something (actually moving swiftly? naah, can't be), but my surgeon was going out of town, too, so I felt like I better do it when I could. Didn't want to wait 2 weeks for whatever thing I was worried about that would have taken an extra day. I do remember having an asthma attack a day or two before and was worried about that with the anesthesia so I mentioned it to them and I had no problems.
I'm sorry about the pains and problems, grannydukes! Extra ((HUGS)) to you today!! I didn't want to do the chemo either, but when I found out it would only be 4 times, I felt like that was somewhat doable. I had my first chemo treatment yesterday, and I still feel alright. The chemo experience wasn't bad either. I know in my case I visualized it MUCH worse than it was. Rads will be next, but I will analyze that a lot before it begins and try to figure out how to minimize the SE for it as much as possible, too. I found lots of good advice about the chemo treatment on a thread titled something like "Taxotere & Cytoxan Chemo?", and hopefully that will help me traverse this aspect of the "journey". I can only take it a little bit at a time (paradoxically, I want them to hurry up). Oh, well, we can be emotional if we want to!
0 -
Omaz - I think that the oncotype test is not done generally for Her2 + tumors. I think that automatically puts us in the more aggressive group, and most of us will have chemo because of the Her2 status. I didn't have the oncotype test because of it, and was told all along that I would have chemo. I even had the port installed during my lumpectomy/SNB, since I knew I would be having the chemo.
So, you may not need that particular test.
0 -
as i read the path report(getting a little out of the fog) i see left axillary node biopsy.why did he just take out the sentinel node.i see you say full node removal.this big big dr that left sloane as a teacher to open his own breast center...he did the wrong thing by me....and now i like the 2nd opinion but i do not like the idea of chemo and rads.the 1st.said no chemo or rad.only arimidex which i got very sick from...hello world im still going crazy.i dont want to eat or get out of bed.i should be jumping for joy.hey i got good news.petscan clean.b/l mri clean.it could be a lot worst.its not working for me today.
thanks for listening
GOD BLESS
0 -
My onc told me that I am really on the cusp of Stage I and Stage II, since my tumor was exactly 2 cm and no node involvement. I like Stage I better, so I decided I'm Stage Ib.
0 -
Hi Lisasinglem,
Glad to meet you. My tumor is a bit larger, 2.3 by 2.8cm. Also grade 3. I am glad to talk to someone with the same diagnosis! Yes I will have chemo too but have to have the port put at a different time from the surgery. Did the doctors offer chemotherapy before surgery to you? My recommended chemotherapy is 6x herceptin, taxotere, and carboplatin.
0 -
Hi all--I had my surgery on Monday and am feeling pretty good. I am still wrapped up so haven't seen the aftermath of the surgery yet. I actually didn't even speak to my surgeon afterwards as he had back to back surgeries and my sentinel node injection took longer and delayed my surgery by 1 hour. I feel a little in the dark--I called his office the next day and have my date for pathology--August 6th is when I will know about my lymph nodes. I feel good to have the surgery done--now onto the next thing. Keeping hopeful that have good news in pathology reports. Just wish things happened faster....don't we all. Hope you are all doing well.
0 -
Hi, I have a question about the sentinel nodes - if the first node is positive and they have already decided to do chemo even before the surgery, what is the point of taking out more nodes? Thanks
0 -
Omaz - It does look like we have the same diagnosis. Once we figured out the size of my tumor based on MRI, the surgeon said he could do the lumpectomy as is (since I have large breasts). If it had turned out to be much bigger, they would have offered me chemo beforehand to shrink the tumor. As it is, it will all work with my schedule -- chemo first would have put a cramp in my plans for the fall. I'll be having the same chemo regimine.
There is also a thread under the Chemo section with people taking taxotere, carboplatin, herceptin. You might look through it and get more info.
0
