Terrified

Nancy2581

Hi All,

I posted in the IDC forum earlier, but I am terrified my cancer has moved to the lymph nodes.  I am having a lumpectomy next week and a sentinel lymph node biopsy, but won't know any results until probably the end of next week.  Does anybody have any insight about my chances of it moving to the lymph nodes?  Here's what I know.  The tumor is 1.2 cm  x 1.5 cm x 1 cm.  It is grade one (5/9) and mitotic rate 1 (1 out of 3). I was told the mitotic rate is very important. I am ER+/PG+ HER2-.  I've told my breast surgeon I was concerned about lymph node involvement and she doesn't think there is.  I made her give me a percentage.  She said less than 10%.  I then saw the radiation oncology doctor.  He too felt the cancer has probably not gone to the lymph nodes, but he was more conservative and said less than 20% chance. The radiology dr who reviewed the ultrasound  saw no indication of anything on it as far as lymph nodes (but how much can you tell).  Both the breast surgeon and radiation dr said my lymph nodes feel fine (I know that can mean nothing). I know anything is possible and I am afraid they are going to tell me it has moved to the lymph nodes and I will  have to do chemo (those of you who have done chemo you are very brave, strong women and I apologize for being such a wimp).  This is my biggest fear right now and it's causing me much stress and anxiety.  I took my blood pressure at the store 5 different times today (while grocery shopping) and it was elevated - sheesh.  It's a new machine - quite sophisticated.

Thanks for any insight good or bad.

Nancy

NancyHB

Hi Nancy!  So sorry you find yourself here, but it's a wonderful, supportive community filled with lots of really great information!

I can't tell you what your chances are for have lymph node involvement - wish I could, though!  It sounds like you're in a really good place, though, for not having involvement - a nice, slow, lazy cancer (mitotic rate) and a relatively small(-ish) tumor size.  

Additionally, even those who have micromets (small numbers of cancer cells in their lymph nodes), or even have positive lymph nodes, don't always have chemo - it's not a given anymore.  Has your doctor discussed having the Oncotype DX test done?  That may be an even better indicator of the need for chemo.

What day is your surgery?  I'll keep you in my thoughts for a good (and negative!) outcome.  *hugs*

Nancy

Nancy2581

Thank you Nancy.  My surgery is this Tuesday, June 24th.  I know no one can tell me until they actually go in there and look at the nodes.  Guess I'm just looking for any kind of reassurance beyond the doctors. I will see the medical oncologist on Monday so will talk with her further.  

tangandchris

Hi nancy

I hesitate to say this, because everyone is different, but the radiologist was able to see lymph node involvement on my ultrasound. So, that could be a good sign for you...however everyone is so different in this deal.

I'm sorry you are going thru this ((hugs)) The beginning is so hard because everything is soooo unknown. Just try to take a moment at a time, a minute at a time if needed. Ask your doctor for meds to help if you need them, something to relax or calm down.

This is a great board though, lot's of women with experience and knowledge and kind hearts.

Morwenna

Maybe stop taking your blood pressure???

Yes, this is an anxious time for you, and that will elevate your blood pressure. No need to stress about how high your blood pressure is!

Tuesday will come around. Then you continue to stress until you get the results and a treatment plan. After that things will calm down a bit. Do anything you can to take your mind off things until you know, and yes, some ladies find anti-anxiety medication helpful.

NancyHB

good morning,

Yes, it's very hard waiting and wondering. You have just enough information to frighten you, but not enough to really know what's going on.  For me this period was the hardest, between knowing I had cancer and getting the final diagnosis with all the results I needed to make a treatment plan.

If you are node-negative I encourage you to ask about the Oncotype test.  I believe you can have the test if you have up to 3 positive nodes, too.  It helps determine the efficacy of chemo.  Even in node-positive patients, not everyone will necessarily benefit from chemo.  Additionally, doing chemo - or any treatment - is still your choice.  

Most importantly - you are not a wimp!!  This is a really scary time after a shocking diagnosis - it's normal to feel a little discombobulated and confused and scared and anxious.  We've all felt those things - it's part of the emotional process of diagnosis.  So don't be too hard on yourself, and try not to get too ahead if yourself with "what-ifs".  It's good to learn about options and be prepared, but worrying about it takes away the energy you need to get through the next few days.

I'll be in your pocket on Tuesday - us Nancys gotta watch out for each other!  *hug*

CanuckMom

the first weeks after diagnosis are the hardest.  It sounds like they caught it early.  This is a very curable disease especially when caught early.  Go ask your doctor for Ativan...it will help you sleep at night (and helps through chemo too, if u end up needing it).  Hugs..you will get through this.  Surround yourself with positive people and try not to dwell on negative thoughts.  Keep yourself busy...try and get out for a walk every day, change your diet.. No alcohol. I started juicing with a vitamix daily (blueberries, bananas, spinach, ice, water chia) ate organic or locally grown foods, grass fed, no hormone meat, broccoli, cauliflower, etc. from biopsy to surgery I actually shrank my tumor from 2.7cm to 2.5 so diet plays a huge role.  No processed foods!  You will get through this and so will I!

Nan54

Nancy, I just wanted to stop in and give you a virtual hug. Where you are right now is probably the most difficult part of this thing - not a complete picture, many unknowns, no concrete plan.... In the next few weeks, things will come together and you will feel stronger.

There is no way to predict if your lymph nodes have cancer cells - believe me, I googled and asked any medical professional who listened! But, I think your odds look good based on what you do know so far. My cancer was almost exactly the same size and grade as yours and my nodes were clean. And then my oncotype score came back low, so no chemo...

As you know, everyone is different and every cancer seems different too. Even if they find cancer in your nodes, your prognosis can be very good. And, even if you have to do chemo, you will get through it. For now, just keep breathing and putting one foot in front of the other. Oh, and Ativan or Xanax helps too!

Hang in there and know that we are waiting with you and wishing you the best!

Helenna

Nancy I can totally relate to the fear and worry you are going through, I'm just a few steps ahead of you as my surgery was this past Monday,  hoping to get my pathology report first of the week. Just know what all the gals above have said is so true, this is the hardest part just feeling in limbo. 

I would suggest that you put all that energy into getting ready for your surgery and recuperating, as that will make it easier on you both mentally and physically. I am not usually the most organized person, but I am so proud of how much effort I put out up front getting ready (  my DH who is an organized obsessed person was blown away by my preparedness.. lol ) Now all those efforts are paying off in that this recovery is going well. Try making lists…..what you need to do like pay bills, pack overnight bag, etc, and also list of things to buy, and things to do like put paper plates, cups, etc all on counters where you can get to them. It will take your mind off the worrying about things you can't control, and give yourself a good jump on your recovery.

Sending big ((hugs)) to you that Tuesday will get here soon and we will both be dancing down this road of recovery!   xoxoxo

Nancy2581

Thanks everyone.  I know nobody can tell me what my chances are this crap has gone to my lymph nodes.  I think I am just angry too.  Why did this happen to me, but why couldn't it?  I am also wondering if this was there a year ago on my mammo.  I had all three doctors put last year's mammo next to this year's mammo.  I feel I saw something in both mammograms, but what do I know I am no radiologist.  The doctors didn't feel last year's mammo was cause for any red flags to go up, but this year's was - although the radiologist said it was difficult to see on mammo.  I'm just wondering really how effective mammos even are?  I feel so stupid because I did not do self breast exams - believe me I am kicking my self there.  Stupid, but I was always afraid I would find something or it would never happen to me.  Well duh.  I feel like if I had been doing the breast exams maybe I would have felt it earlier.  Although I don't know - I could barely feel this lump when my doctor discovered it and even had to call back and ask where it was.  Now after the biopsy - it seems very hard -  guess the little bastard got traumatized - good!!!!  Sorry, I'm just ranting.  I go from pity party, to anger, to thinking I can deal with all of this and then it starts all over again.

I appreciate everyone's support.  I am saddened by how many people are in this club.  It's an epidemic and that is very, very scary.

Hope everyone has a great Saturday.  I'm gonna go do laundry. YAY - NOT.

Nancy

Jennie93

Nancy, I know you know this, but sometimes we all need reminding, there is no use looking back. Saying "what if" is an utter waste of time. It is what it is and we have to look forward and try to stay positive. Everything sounds very promising for you so far, but you never know. My lymph nodes felt fine, looked fine (on ultrasound) and didn't show up with anything on the PET scan. Nobody expected to find anything there and nobody said one word about the possibility of chemo, beforehand. Yet there they were. It was a huge shock to say the least. I think you are maybe in a better place than I was, because you are aware of the possibility, so your mind is beginning to process the idea already. Chances are quite high that you will be fine - but if you do have to go through chemo, you will make it through just like I did, and the support you will find here is just the best, seriously.  Hang in there! 

Kicks

My 'take' on %'s.  Stay away from them.  Your personal %'s are either 0% or 100%.    There is no way that a portion (%) of you  will be 'positive' (or negative) - either your nodes will be negative (0%) or positive (100%).  The overall %'s are just that - everyone added together as to what their stats are combined - not individual.  They can show a likeihood/unlikelihood of what might be in store but there are many things that do not come into play in the math done to come up with them.  Some of the things that can come into play are health at time of DX, fitness level, weight, family history are just some of what comes into play.  I did not 'dream' this up totally on my own - it's basically the same thing (though not exact words) that my Surgeon, Chemo Dr and Rads Dr said.  We are each unique individuals, we are not a 'stat'.

IF nodes have become involved - then they have and chemo will most likely be in order.  No one WANTS to do chemo, but it is quite doable.  Often, with some types of BC, it is not known until surgery if there is node imvolvement.  At times, it is known before surgery.  In my case I went into surgery after neoadjuvant chemo knowing that nodes were positive based on biopsy.    19 of the 19 removed nodes were positive.  But then I'm IBC not IDC.

Thought - do not dwell in the darkness but rather live in the light of knowledge and doing all you can to fight to win.

(Someone suggested staying away from those BP machines in stores - I agree.  You are stressing yourself out by continually doing them - 5 times in one shopping trip?  Also many of those machines are not accurate.

Nancy2581

Yep, I know - not doing the blood pressure thing anymore.  I just thought that my BP would come down since I wasn't at the doctor's office and my mind was actually focusing on grocery shopping.  I once asked my FP if those BP machines were even accurate.  He said the more overweight you are the less reliable they are.  Hmmmm.

And yep that's what I am stressing over.  Everyone can tell me they don't think it's gone to the lymph nodes, but we all know how that goes.  My BS said she thinks the little effer has been there 7-8 months.  Plenty of time for it to travel IMO.

Okay, but I'm over it.  I finally decided I can't control any of it now and to take it one day at a time.  Well at least that's how I feel today - even told myself if I have to do chemo so be it.  Of course, tomorrow is another day and I may have another pity party where I feel as though I can't handle any of it.  What an emotional roller coaster ride and I want off.

Nancy

Valgal

Dear Nancy,

I was very lucky and have had very few issues with my treatment, but I remember my unbelievable anxiety during the whole process of a lumpectomy and radiation and hormone treatment decisions. I'm not going to tell you not to worry either, because that wouldn't be right or possible. If I could do it over I would try to limit my time online and believe in my instincts. I wish you all the best and you have found a wonderful, informative site with thousands of strong and informed women and men. Try to stay positive, and logical, and informed and believe in your health and your ability to heal.