im scared and depressed plesse help!!''

chgogemini

I was diagnosed on Dec 14 2012 and its been a nightmare fr me. I was told that my ilc has good biology and its good. I had my lumpectomy and sentinal nodes removed I rececidced a call two days saying the sentinel had a 3.5mm positive tumor. Ive been such a mess because now I will probably have to have chemo.



How can a small 8mm module do this??? Inhave three kids and I feel so alone. I cant be happy that's all I worry about is cancer

maltomlin

Hi

I'm so sorry you're going thro' this but I think we can all sympathise. Mine wasn't ILC so I can't help with that, but I can tell you how my dx changed.

After the biopsy I was told that it was Grade 2, 1.5 cms with no nodes affected.........no chemo. After surgery it was Grade 3 and 3.5 cms with 3 nodes invloved.......chemo. I was devastated and so scared.

But the chemo wasn't half as bad as I imagined. Yes, I felt rough sometimes but at least I was doing something positive to fight back.

I'm now nearly 5 years from dx and feeling great. You will too.

xx

Moiralf

This is the very worst time. Everything is shocking and difficult to hear. There is nothing wrong in being scared and fearful. It takes time to come to terms with what is happening and to get your head around the huge changes  that have happened. 

Chemo is doable and you have to think that it is killing all those random cells that might come back and bite you a bit later. 

You take one day at a time and try so very hard not to go to the worse case situations. Deal with what is right in front of you and that is all. Some women choose to get extra help with anti-depressants or anti-aniexty pills, these can help very much with being able to clear the panic and allow you to relax just a little. Again it is really fine to do that. I use both at times and it is just to help with the rough stuff. Things will get much better when you get started and you can see the way forward. 

If it helps for you, talk to someone, usually not a family member but someone who is trained in dealing with cancer. Sometimes the hospitals have a service or know where to go to get help. Talking can help put things in perceptive and sort your thoughts.

And remember to breath. We forget in our stress and a few deep breathes help relax us and clear the chest. It's not a big thing but it does help. I use to find it calmed me just enough to keep moving forward that day. Big slow breaths out of the diaphragm rather than the chest.

Go slowly and look after yourself and be gentle with yourself. It will get better.

Moira

Lily55

You always have a choice about chemo - ask for the facts and figures (remembering they are at least 5 years out of date) - ask for a second opinion or second biopsy or pathology report if you are not sure - what matters is that you are in sync with your treatment plan - I had ILC and nodes affects including a 2.5cm enlarged node and chose not to have chemo for numerous reasons mostly related to my wider health status...........but keep asking questions until you are happy with your plan

chgogemini

Thanks ladies I'm meeting with the bs tomorrow. What kinds of questions should I ask????



G

Jennie93

You will want to ask whether they got good clean margins around the tumor.  You will want to know if it was growing into the skin, muscle, or nipple.  You will want to know how many lymph nodes were removed, and how many were negative, and of the one(s) positive, what kind of growth was there?  (I had cancer cells in 3 lymph nodes, in 2 of them it was extending out of the node itself, and then a 4th one they found some micro cancer cells.  I guess these differences play a role in what kind of further treatment they recommend.)  

Looks like you already got the results of ER+/PR+, HER2- so you will probably get Tamoxifen but not Herceptin.

There's a site called cancermath.net that has interactive charts showing statistical results from various different treatments, it was very helpful for me in making my decisions.   http://www.lifemath.net/cancer/breastcancer/therapy/index.php

I think the best advice I got was to do my research, pray a lot about it, then make a decision and don't look back.  Do everything in your power to make the treatment you choose effective, but never waste any time on "what ifs".  

And hang out here, I guarantee we all totally understand how you feel, and you will get tons of great support.  I couldn't have made it without all these wonderful folks here.

chgogemini

I had a hard time with lifemath. J didn't understand what all the meed mean. Whayndoes Nan mean something about 42.9. I'm 39 can j help me

pupmom

You need to ask about getting the Oncotype DX test.  This test determines if you would benefit from chemo. It is indicated for ER+ people who have 3 or less positive nodes.

I had 2 nodes positive with micromets and did NOT get chemo, due to my low Oncotype score. 

chgogemini

I will definately get that done. The nurse told me that no matter what my score is I'm getting chemo. Why would she say that. My nodebhad 3.5mm in it



Im so scared it can travel.

pupmom

Some old school doctors take that position. However, doctors on the cutting edge go with the latest research, which supports what I stated about positive nodes and the Oncotype DC score. Remember, you can always get a second opinion. I did, and the second opinion verified what my original MO, who is a world renowned researcher at an NCI hospital, stated: no chemo for me.

pupmom

Chgogemini, I just noticed your birthday. You are so young, which may be the reason your doctor is insisting on chemo. I was 63 at dx. It's a whole different ball game for people your age.

chgogemini

Oh great!!!

Rose_d

I had very similar stats - was 39 at diagnosis.  Went into my mastectomy surgery having had a negative lymph node biopsy and encouragement from my surgeon that I would not need chemo.  Woke up to find out the sentinel node was positive with a 2.5mm tumor.  I was also devastated.

For me it meant chemo (my doc does not do the oncotype test for someone as young as we are with even 1 positive node) and radiation.  It was a crappy year, but I did it and almost feel back to normal now (aside from being out of shape which I am trying to fix now).

I too have 3 small kids (10, 8, 6) and it was not easy for them in the beginning but I think they are now in a great place, see that I am healthy and feel proud for their mom to have gone through something tough.  Me losing my hair was the hardest part for them.  They still don't love the short hairdo (my husband does!) but in their minds things are really back to normal at this point.

Good luck with your appointments.  I know everyone says this but it's really true - the first month or so before you have a full plan in place is truly the worst and scariest time. Hang in there.

Rose

pupmom

I didn't mean bad, just different! Remember, you are Grade 1 so your cancer is NOT an aggressive one. It is also small and ER+. With those excellent stats the Oncotype test might be appropriate. But obviously your current dr. does not think so. So, you still might want to consider an second opinion. Sorry for the confusing statements.

Robin_Brooke

I was diagnosed at 41 last year, with what started as a lumpectomy and turned into a mastectomy with 2 positive nodes. It is very scary at first, your brain goes nuts and rushes through scenarios a thousand miles an hour. It will be like this for a little while until you get your plan set and know who you're working with and can gain some confidence. Believing in the people providing your care is huge. I definately recommend anxiety or depression meds for the short term if you need them. They were a great help to me.

Chemo sucks, but you will get through it. You've lots of new sisters here who will help and cheer you through it all.

Rose_d

Chgogemini,

On your age and chemo, what my doc said is - "oncotype tells us the likelihood of recurrance within 10 years.  I don't care about 10 years for you, I am aiming for much longer than 10 years".  I was so relieved to hear that, that I decided it was a good thing that they were going to treat me so aggressively.

And the good news is that you are young, probably healthy (aside from the BC of course) and you can handle the aggressive treatment.  You will make it through this!

Rose

chgogemini

Do polar ice caps really work???

SelenaWolf

Some say yes, some say no.  Never tried one myself.

Anonymous

chgogemini~

Regarding the polar ice caps.  There is a whole thread about women having great success with them and tips on how to get them, use them etc.  I followed the thread for awhile when I was waiting for my oncotype test to come back.  I ended up not doing chemo, but would have opted to use the caps if I had.  The caps aren't cheap, take some planning and willpower (to withstand the cold) ~ but if losing your hair is devastating to you ~ would be worth try.

Best of luck to you and hoping you have a smooth journey.

smethot

Just got back from my pre-op appt with the surgeon and she said 100% chemo for me.  I'm 40 with at least one (probably 2) positive nodes, small 1 cm lumpie- agressive.  She said no oncotype testing.  i told her i am young, strong, healthy, willing and able to throw everything i've got at this...doc agreed- chemo is a GOOD thing for women like us.  KILL it NOW.  After lx & sentinel nodes are pulled next friday (yeah!) we agreed i no longer have cancer.  IT IS GONE!  And if i have any little rogue cells floating around, that's what the chemical and rad warefare are for...kill them for good and for always.  At our age, chemo and rads make sense...i like Rose_d's surgeon- "I don't care about 10 years for you, I am aiming for much longer than 10 years".  Hell yeah.  Bring on the chemo!

Rose_d

By the way, my doc said no to the ice caps as well.  I suspect it's very conservative thinking but they said they the caps work by keeping the chemo from getting to your scalp.  There are no long term studies that prove absolutely that people who use them do NOT have a higher incidence of mets to the scalp so they do not let people use them.

This was at Sloan Kettering and is apparently their stance across the institution.  She did mention that they were going to be starting up a new clinical trial using vitamin d to keep the hair from falling out but I was too early for the trial.

No doubt about it, losing your hair SUCKS.  It was the hardest part for me.  I could handle feeling sick, I HATED looking sick.  Just try to remember it does come back.  Easy for me to say now, I still shutter when I look at the pile of hats in the corner of my room. 

Rose

maltomlin

Hi

It's hard facing up to chemo. I sat in the chair waiting for my first infusion and was scared to death, wanted to rum away. Then  I thought, 'those little kids go thro' this' and got on with it. It wasn't as bad as I feared.  Hairloss?

My wigs are now on top of the wardrobe, gathering dust, and they've been there for nearly 5 years!

It's hard losing your hair, but it's a small price to pay to get your health back. I hated losing my hair and spent hours on the internet looking for wigs. Once I found a great website and ordered one, I felt a lot happier. I was happy with the wig.

It's even greater (and also more stressful) when your hair starts growing back. Mine was in cork-screws and I couldn't do anything with it. When my hairdresser finally managed to blow it straight, I was in tears. Looked like me again.

That was a long time ago. I'm doing great. Feeling well and not coming on these boards very often.

xx

chgogemini

Maltomlin



How did you onc choose for you to take xeloda ??? Is that an oral med??? How did you tolerate the chemo meds, was the other one an iv??



Sorry for all the questions just really scared.

6timesurvivor

I did six rounds of Xeloda.  No hair loss, I had literally no side effects.  I took it in 2008.  It was great....easy...continued working   You take 3 (i think) pills in the morning, three at night....two weeks.... one week off.....resume 2 weeks...one week off.  It is the same routine as the intervenous chemo where you get the one big shot, 3 weeks off, another shot.....they are finding that Xeloda absorbs better when you take it daily vs. the intervenous method.....your body kicks so much of the dose out when you are given all of it at once.  They found that xeloda is absorbed so much better. 

I had EXCELLENT results from it.

Don't be depressed.  If I let this get the best of me, I would have wrecked the last 10 years of my life.  I feel better today than ever.  I just deal with it as it comes....like a diabetic has to check his/her sugar every hour....this is our cross to bear.  Consider it like a chronic illness we have to manage.  There are sooo many new treatments on the horizon. 

The "c" word flips everyone out.  It is becomming more and more manageable.

Hang in there.

smarkus381

chegogemini, I understand how you are feeling.  I went through the same thing.  Chemo was not as bad as I thought it would be.  I think the build up before the first treatment is the worst!  Once I got through the first one, it wasn't so bad.  I was able to continue working throughout the entire process just missing a day or two after each treatment.  I am a teacher and was really worried about the hair loss.  The students handled it amazingly well.  I had a wig, but it wasn't comfortable for me so i bought several trendy hats and wore whatever matched my outfit for the day.  When my hair grew back enough to stop wearing a hat, my students kept staring at me.  I asked why and one said, "We just aren't used to seeing you without a hat!"  I had right mastectomy and radiation and just received my latest bloodwork.  My cancer antigen level was in the normal range.  Not a guarantee but I feel like anything that kills the cancer is worth it!  Hang in there!  You will get through it.

Cindyk8

Mine is not the same as yours, but I can relate in the aspect that I am terrified. I found my lump 2 months ago. It has went from probably nothing to radiation being the worse case, then a bilateral mastectomy.  I just found out I have to have five months of chemo to go along with it.  I am having my pet scan and mri in two days.  I have never been so scared in my life.  My first concern was keeping my breast.  When I found out that was not possible, I worried about my hair.  Now honestly....I just want to live.  I also have small children.  When I think of not being here for them, I makes me physically sick.                                                                   

Cindy

Dx 12/18/2012, IDC, 1cm, Stage IIa, Grade 3, 0/2 nodes, ER+/PR+, HER2

Surgery 01/14/2013 Lumpectomy (Left), SNB

chgogemini

I know where your coming from. It just sux!!!! We are too young for this.



I found the tiniest lumpie thing that couldn't be seen on mammo or felt by Bs. They finally found it in us and told me it was like not having cancer t was so early. Then find out its in a node. Now after talking to 3 mo im having chemo on Thursday. My kids don't know I don't know how to tell them.



They say it gets better. I recommend xanax or Ativan to relax because its to stressful. The women on these boards are great. I've been crying and freaking out in here for a month now and they really help me thru it.



Let me know your results



Good luck

Cindyk8

One of the major things I have learned so far is ....You have to take this one step at a time.  Projects that had a time line and things I thought meant a lot to me before have taken a back seat. I was crushed at the thought of loosing my breast...then it was my hair and nails.  I know now that those things do not mean anything in the grand picture. I am going to jump through whatever hoop I have to jump through to be with my husband and children. I am waiting on a PT and MRI before I can move forward.  God has been my greatest comfort.  He was right there waiting on me. He wants us to need him and call on him. With him I can endure all.

Cindy