Spread to Lymph Nodes - Help please

juliehere

Now it is my turn.  I have been NED for 3 years.  Today my PET showed it had spread to lymph nodes throughout my entire body.  Can anyone tell me about a chemo they used that had good results with this?  Is this the end?  I am a single mom, have 2 kids at home, they are older, but I am worried what will happen when I am gone.  Will hospice take my house?  I'm sorry to ramble on, I just don't know what to do.

My onc suggested going to a dr. in Nashville, or Indianapolis, which is both about 3 hrs from me.  Does anyone have a recommendation for a breast cancer specialist?

Thanks

Julie

ElaineD

Can you be more specific about where it has spread? If it's only to the bones, then many people survive with good qol for years.If it's contained within the lymph nodes, I don't know what the implications for your future treatment will be (sorry!).If it's spread to organs then it's much more complicated, and you will need some form or another of treatment for the rest of your life. There are a number of chemos which can be used, so it's impossible to say what would be suitable for you. So much depends on so many factors, that only your onc can really answer that question. 

Try to slow down a bit-don't think too far into the future, but focus your strength and energy into getting  a treatment plan together as soon as possible. Once you start on active treatment, you'll feel a little more in control. Good luck

juliehere

Originally it was just in one spot in the bone.  After chemo and radiation, I was NED for last 3 years.  I have been on Zometa and Femara during that time.  I did switch to Zometa every 3 mos, don't know if that was a factor.  Now the mets are only in the lymph nodes, in the groin, under arm, above and below the clavicle, in the mid section around the heart and lungs. 

cancersuks

Juliehere,

I'm sorry to hear this!  I'm currently dealing with BC that spread to my spine after 12 years.  I'm doing Zometa and Femara as well.  My oncologist told me to cut out all soy, looking at all the food in my fridge, I was amazed to see all the soy in the food.  For ER+ every little change helps, I no longer drink soda or use artificial sweetners...  I read that those who get at least .50 hour exercise a day, cut their cancer risk in half, not sure what the odds are for us.  In addition to finding a good doctor, find one that "cares"...   Let us know what you find out....  many hugs to you!

Lowrider54

To cancersuks - Thanks for the tip on soy...how did you stop the soda - I am a Pepsi addict although I have reduced to 1 20 oz bottle a day - maybe 2 on the weekends - bc bones mets after 10 years NED - presently on Arimidex/Aredia combo - we have communicated before and I appreciated your kind words when we both new around the same time.  Hope your treatment is kickin' butt! 

To juliehere - So sorry for your news and sorry I can't help you much...have you posted up on the Stage IV forum?  There is are some threads about some cancer-kickass stuff and tax info and house related stuff and accel life insurance benefits - lots (unfortunately) of folks have had the experience.  ElaineD is right - your onc will know best about treatment options but I would for sure take a look around on the Stage IV forum for answers to some of your other questions - hugs to you, breathe and do let us know how it goes!

cancersuks

Hi Lowrider54, I use to drink 4 diet Dr. Peppers a day; if I didn't get my fix in the a.m., I would get a headache.   About two weeks ago,  I said to myself...enough, if it causes cancer in rats....I now get that message with this 2nd diagnosis.  I went cold turkey and haven't had a craving for it. I've got cartons of coke and Dr. pepper sitting in my fridge.  Now I'm going to have to tell my Jenny Craig consultant, I can no longer continue on her diet if there aren't foods available without soy in it.  Most of the foods I've gotton from that program has some sort of soy in it.  I'm really kind of surprised since it is mainly women that use her program.  I've been on it for approx. 3 years to lose weight from my first cancer diagnosis.  The chemo treatement made me put on 30 pounds, I hope to God I didn't cause the cancer to come back with all that soy...

moonwolf

Is soy and soya the same thing?  I thought that soya was good for cancer!  I have upped my intake!  I'd better double check on this.  Good luck.

Lowrider54

Thanks, cancersuks...and I don' t think anything we 'do' causes this crap to come back - it just does.  Cold turkey on the soda, huh?  Oh boy, that doesn't sound like fun.  Then again...none of this is 'fun'.  I saw the mini cans in the store the other day...I think I will try the 'step down' routine just like they have me on the 'step up' routine on the meds.  Humm. 

And geez, you are right about the soy - I could no believe how many products list it as an ingredient!  Shopping is going to be an adventure in reading labels!  Better be sure to take my glasses!

Hugs to All!

Sharon

juliehere

Thank-you everyone for your replies.  I was upset and haven't been on again for a while.  They ruled out lymphoma, but the biopsies showed it was malignant.  They just can't tell what kind of cancer it is.  I took a ca125 test for ovarian cancer.  What ever kind of cancer it is, it is exact opposite of my breast cancer.  It is er/pr- and her2+.  Tomorrow I have my appt, and hopefully he will have some answers.  I can't believe it, that I have another cancer on top of bc.  I have been so sad.  I have a 18 yrs old son and 21 yr daughter at home.  I am single, what will happen to them and the house?   My son is planning college and I hope I can be there to help him.  I don't want them to have to see me go down.  I always tried to fix everything for them, keep everything running.  Thank-you everyone again.

DianeKS

Hi Julie,

  Sorry that you are going through this again.  I don't have an answer to your original question about treatment, but I wanted to let you know that with recurrences your er/pr can change.  At diagnosis I was er+/pr+ Her2-ve.  With my recurrence I am now er+/pr- and her2 +ve.  I was told 20% of patients have a change in status with recurrence.  Having said that I don't know why, and if it tells the oncologist anything.  I will now need to take Herceptin, and not sure if you have already received that or not.  Is it possible that they would want to do another biopsy or removal of a lymph node for further testing?  I'm not sure if ca 125 is very accurate for a diagnosis of ovarian ca, it just gives them more information if the biopsy was inconclusive.

My children are younger, and I am not in your same situation , but understand your concern about them.  Try to take it one step at a time, good luck with your apt tomorrow and let us know what they tell you.  Hopefully they will have some answers, as not knowing can be worse in my opinion.

I'm sure you know this but write down your questions, and take someone with you to your apt. if you can.  I will be thinking of you.

Diane

juliehere

Well I found out that it is breast cancer, and that the status has changed from er/pr+ Her2- to er/pr- and Her2+.  He said is was really aggressive.  He sort of wanted me to do the AC again w/Herceptin, but I decided to do Gemzar and Herceptin instead.   I hadn't heard of anyone repeating AC.  Has anyone done it twice?  He didn't give me a very good prognosis.  I am not sure why, because I have heard good things about Herceptin. 

DianeKS

Hi Julie,

   Thank you for letting us know about your apt.  Yes, I have also heard good things about herceptin, and esp. with aggressive disease.  I can understand why you would not want to do AC again.  Are they going to start right away?  I had to get a heart test before herceptin started.

  On to the next step...deep breaths,  treat yourself well, and all the best with your treatments.

  Diane