I'm new and need help

Hello and welcome to the club you never wanted to join. My cancer is probably quite similar to yours. I had stage II, 3 out of my lymph nodes were positive for cancer. I chose a bilateral mastectomy so that I'd not have to worry as much about the future. And I chose to be very aggressive in treatment for the same reasons. Once it's spread to your lymph nodes, chemo is recommended to kill any cancer cells that may have strayed outside of the tumor area. It's an all-body treatment, and raises your chance for survival, and lessens your chance of a recurrance. Radiation is a localized treatment to kill any cancer cells that might be near your tumor or affected lymph nodes. Like chemo, it lessens your chance of a recurrance, and might raise your chance of survival. My long term survival is something like 96% with all the treatments I got. Without them I'd be looking at 60-something percent chance of survival over 5 or 10 years (I forget which).

I did have an MRI. Different tests give them more information, but in terms of rads and chemo, it sounds like you already know enough to start thinking about them. Chemo can be very hard on the body, but it does seem to significantly raise chance of success.

I'm so sorry you're already having lymphedema. Have you spoken with a physical therapist about it? Do you have a compression sleeve? There are stretches and excercises and mild massages that can help.

As for your lymph nodes, I haven't heard of tests that can tell if other nodes are affected. Standard of care is to remove them all if any are positive.

When you go to Mayo, take a friend or family member if you can. Write down any questions you can think of, bring paper and pen to take notes, and let your friend help you if you get confused.

I'm not a doctor, but it sounds like the right things are being considered. And there's TONS of info in this forum.

Hugs, good luck, and try not to worry too hard. I'm out the other side of treatment (by a couple of months) and am feeling pretty darn good.

annettie ~  You're not ignorant!  Like most of us, you will feel like you have a master's degree in bc by the time you've been here and dealing with it awhile.  There's a lot to learn; it just takes some time.

I had chemo (not fun, but not as bad as I'd envisioned) and rads, and I'm happy to report that there is absolutely light at the end of the tunnel you're just entering.  I also had left side bc and was worried about heart and lung damage, but my radiation oncologist assured me that would not happen.  Perhaps a second opinion from another rad onc (like at The Mayo Clinc) would be good.  I know when I went to UCLA, I had all the specialists review my case in one afternoon, so I had a much better idea of what still needed to be done.  Hopefully, The Mayo Clinic has a similar program for women like you who have already had some treatment and need to know where to go from here.

Of course it's scary for you, but hang in there!  You'll get through it, and taking the time to go to The Mayo and get opinions from docs of that caliber is a great step.  And you know, if the Mayo isn't convenient for you, after you consult with them, you can always take their recommendations back to your local docs.  That's what I did for some of my treatment.    Deanna

I want to echo what you said to GryffinSong, Annette - that last line about "coming through treatment and feeling pretty darn is good" is the news we need to hear and keep hearing when we are scared, whether just starting out or having a wobbly day later on in the journey. Keep it flowing and remember to share when we get good news! Thankyou Gryffinsong

Hi again! They did a sentinal node biopsy, found cancer in at least one of the sentinal nodes, so removed all the lymph nodes on that side. 3 out of the 18 were positive for cancer. As for lymphedema, my arm is fine, but I'm beginning to think I have some truncal lymphedema on my right side under my arm. The "booblet" (area of fat where the scar is) feels tender and heavy, depending on what I've been doing. As soon as I find doctors here in my new state (I just moved cross country) I'll ask about it. I find that stretching helps it feel more normal. I've read that a special bra would help me, but I don't have boobs left, and a sports bra can sometimes do more harm than good. I'm wondering if I should just gently wrap an ace bandage around my chest.

Hugs and take care! We're all here for you!!!

hi...I lived in MN for a while so I thought I would say hi.

I am guessing with your node situation, you could have more nodes removed, or have rads on your axilla, they probably feel that you may have traces of cancer in other nodes but they might not be fully involved. If you had a lumpectomy you will have radiation anyway.

There are ways to avoid damaging other organs during rads....rads on your front might be an option.

 Chemo is pretty standard if you are her +.

I think your case is complicated enough to warrant a second opinion at Mayo.

Good luck!!!!

gosh you are in a tough spot with the lifting. The good news is that new research shows activity is beneficial for lymphadema up to a point...the bad news it that it is very hard to judge what that is and there are a MESS of differing opinions.

My hospital had a specialist come see me before I was discharged and my surgeon thought the advice was ridiculous...at the same hospital.

You may need to ask for modifications. I know first hand WI has strong disability laws, I am guessing MN is pretty progessive on this too.

I am doing ok, day 5 of rads.

I digress, I think you should get a second op, since the decision about disection vs axilla rads is tricky. There is a lymphadema board here, also ask for a PT who specializes in the situation. I'm no expert.

 Good luck!

Hello, with only having a couple of sentinel nodes removed I doubt you would have Lymphedema so early on. You probably have a fluid collection called a Seroma which is very common post surgery. My breast surgeon drained fluid that had accumulated in my armpit a couple of times, it dosen't mean you will develop Lymphedema, it just seems to be a post op thing, excess fluid accumulates and the body gradually absorbs it or the surgeon drains it with a syringe. I had an axillary node clearance nearly a year ago now and I'm back doing weights at the gym and no sign of Lymphedema.

I wish I had some answers for you on the HER2 status - I am thinking they treat it with Herceptin?

Believe me, if I am wrong, someone will come in really quick and set me straight

I hope you get to the bottom of your lymphedema or seroma issue - whatever it is.  I had to quit my job or take a major risk of getting lymphedema with the work I was doing.  Heavy lifting of weights, repetitive motions are just two causes for getting lymphedema.  I do wear a compression sleeve and glove when I fly or do anything major like when I get into a housecleaning mode.

I thought my world was going to end when I heard "you will need to do chemo" - It wasn't as bad as I thought it would be other than losing all of my hair and gaining 20 lbs from being on steroids.  Of course then I gained another 10 pounds going into menopause from the chemo so I am on a mission to get rid of the weight before I do any reconstruction so I will end up with the best outcome possible.

I am glad you have an appointment set up.  Please take a friend or family member with you to take note, bring a notepad with you.  You will get overloaded with information and of course just the stress of knowing you have BC is enough to create short term memory loss.  I couldn't remember half of what was told to me by my different doctors in the beginning.  My mind just kept wandering.

I chose to go the most agressive route possible (excluding masectomy).  I had no node involvement and could have gotten away without chemo but then it would have been hard to get a good outcome on my lumpectomy.  I had chemo first and it shrank my 4 cm tumor to the point where the doctor couldn't even feel it.  The relief is that I know my body reacts well to chemo.

Hang in there, we will be here every step of the way for you.

Hello again,

I had a wide local incision - breast conserving surgery, bit more tissue that a lumpectomy but not a mastectomy. I had 2 lumps (multifocal 2.1cm and 1.5 cm) located close together so my BS took a wedge of tissue, I have a chunk missing form my breast, but it still looks ok. I didn't have a sentinal biopsy first because I had multifocal BC my breast surgeon took my lymph nodes in the same operation, I had 10 lymph nodes removed 2 were positive, everybody has a different number of lymph nodes in their armpit.

I did have a stiff arm for several months, it has taken daily stretching and exercisers to get full movement. The fluid that accumulated under my arm wasn't painful just annoying, felt like a tennis ball in my armpit. I also had cording down my arm which felt very tight, it did get better with the exercises.

I'm like you, triple positive - that is ER+PR+ Her2+, so you get the full works, the jackpot in breast cancer treatment. I did 24 weeks of Chemo (AC x4 every 3 weeks, Taxol x 12 weekly), 6 weeks of Rads and Herceptin (wonder drug) every 3 weeks for a year. I commenced taking Arimidex after I finished Rads in Oct last year.

I was diagnosed in Feb last year, finished Chemo in Aug, finished Rad late Oct and continuing on the Herceptin till June this year. I remained really well during treatment with minimal side effects, I had 9 months off work, but now back full time and busy with 3 little kiddies. The Chemo put me in menopause, but I have been lucky in that I didn't put on weight during treatment and remained really well and was able to exercise throughout out Chemo and Rads.