So many lymph nodes

Remember, there is no rhyme or reason to who will progress or not. I know some ladies who were diagnosed DCIS, Stage 0, who progressed and are sadly no longer with us. There is no magic 8 ball to tell what our future will be. Being stage 3 and/or having positive nodes makes the odds higher but they are still just odds. I was diagnosed with Triple Neg Inflammatory BC with a 40% survival rate past 5 years and yet I'm STILL here annoying people on this board who hate my guts and wish I'd just give in to the odds already. ROFMLAO! I'm just too ornery to give them that pleasure.



The best we can do is hang onto hope, our faith in G-d, and determine to live each day as it comes.

Terry--I had 10 of 16 nodes after neoadjuvant chemo. Same thing--my tumor shrank but did not go away, and maybe some nodes got better but obviously some did not. I was shocked because no one had told me from my MRI at diagnostic that my armpit looked like a clump of spaghetti with all the lit up lymph nodes! Anyway, I'm doing great, back to my very busy life (even busier), able to do everything I want, one year out of treatment and approaching 2 years from diagnosis in August. Dealing with the knowledge of my node status and all of the statistics does get easier as time passes.

Hello AryaS,

I have been where you are, dear. Lots of nodes being positive it not a good thing to hear. (22/29). You will make it through this. Its been three years for me and I am not looking back. I posted the following a while back. It might give you some comfort.

Since June of 2010 when I was diagnosed with stage 3C breast cancer I have cried maybe, 5 times.

1) When I found out.
2) When I had to tell my sons, ages 16 and 20 at the time.
3) When I had to ask my husband to help me bath during chemo.
4) When I had my mastectomy, and had an accident in the bed from the dopiness of the pain pills I was on.
5) My 50th birthday.

With that being said, I have awaken every morning thanking God to have been able to wake up. 
Pushing myself though each day, no matter how difficult.
Enjoying every moment I am able to spend with my family. We actually spend more time together now than we ever have before.

I have seen my oldest son graduate from college and my youngest graduate from high school.
I have so many more things to look forward to. 
We have planned a wonderful trip coming up this spring that will give us all great memories to cherish for years to come.
When I go to sleep every night, I thank God for that one extra day he has given me.

I look at each day with so much promise.

Don't let this horrible disease define you.

Live your lives, ladies!!! 

That was the beginninging of this year, we just got back from our trip. Everyone had a wonderful time and we have lots of memories. You will get there also.

Love and Blessings

Sharon

Never mind the last question. It just miraculously showed up.

It drives me crazy that the docs/surgeons don't prepare patients by telling them their initial pathology will change after surgery. It makes sense that they really don't know much until they remove the tumor and nodes and analyze them. I too was shocked by the amount of positive nodes I had--13/15, and yes anything over 10 is staged as 3C.

Hang in there and take one step at a time. You can get through this and we'll be glad to help.



Sharon

Oh how I can feel for you my dear friend.. I am going on4 years. I was told I had 1 maybe 2 pos. nodes, pre surgery... Well, 10/17 one being over 2cm .. Shocker!! I had a 4 year old and an 8 year old at the time. I really thought I would not see them grow up but, I am!! I will never forget what my BS said to me the day after surgery she walked in and gave me the news regarding all the nodes, she did not expect it either. I said, I want to live, am I going to die? I am so scared! She looked at me and said, you r not going to die you r going to live!! Yes you have a big uphill battle and I did as you do too but, you r going to make it and live!!!!

I am living, most days are so busy and filled with life, I forget I had it! And then there are the days the fear comes and it does come... It also leaves, I pray a lot, and I love my kids with more love then I can even put into words!! I appreciate every good thing in my life and I thank God for my husband who is always there to tell me I am not going anywhere!!!! I pray for my sisters on this forum, are nodes did there job!!! Chemo killed thoughs stray cells and rads was insurance!!! I did take out my ovaries because I was so highly ER pos.. It's been hard but, I have no regrets. .. Tamox is my constant companion and I praise God each time I take the pill!! None of us no why . So don't ask why... Just, dance in this storm? Dance laugh and love the people that love you!! You will be ok.. I promise!! Hi to Sharon, miss you love!!!!

May God keep you all safe and peaceful as you walk through this hard but, doable journey!!!

All my love Sisters!! Stay strong!!!!!



Steph

Thanks so much to all of you as well. I am 43 with a family history, but not the gene.   I was diagnosed on 5/13 and had surgery on 5/17!!  Surgeon found sentinel and one other definitely positive, and was shocked to find out I had a total of 8 positive.  I am also triple positive (and I'm sick and tired of hearing "well, it's better than triple negative!" ) Meeting with oncologist tomorrow - I have many more questions after reading your posts.  Thank you!!

I had 16 positive out of 18 nodes, with exracapsular extension.

I also had an early stage another primary (colon) at the same time.

Since surgery was before chemo, I was obsessing whether chemo was successful.... (No tumor left to observe any shrinkage ...). Living in constant worry, especially that I also had a few tiny (to tiny to diagnose via biopsy) lung nodules.



Finally, 2 weeks ago I underwent an open lung surgery to remove those nodules and know for sure...

Yesterday I was told : no cancer found! Best news ever!

That means: chemo and rads were successful!

I guess having lots of positive nodes wasn't necessarily a bad thing. It didn't leave me any choice but to accept a full, aggressive treatment. And this tx worked!



I'm here, doing great, ready to move on!



So, please, don't focus on the number of positive nodes! Use this energy to enjoy "your good days", finding a positive ways to deal with treatment SE, (walking, healthy eating), pampering yourself.



Your mind and body will thank you for it!

Sharon1953,

I had a couple of 2mm & 3mm nodules in upper lobe of right lung (BC also in right side) on my diagnostic ct scan last year in May. My BS and onc didn't seem concerned at all, so it was left to be.

I had right MX and colon resection (had another primary at the same time) on June 27/2012, then chemo for bc and rads; no further tx for colon.

My colon surgeon is doing the actual "follow up scans", therefore I had another ct scan in December. That report didn't comment on the nodules in upper lobe (were they gone or really not worth mentioning? - I don't know), but there was a few new tiny nodules in lower love, described as "most likely inflamatory/infectious".

Due to a lot of anxiety, I convinced my onc to refer me to a lung specialist for consultation. I went prepared: I collected all my images from May and Dec scans on CDs and asked the lung dr to compare them. He did say that they are probably b9, but couldn't be sure with my cancer history.

I was told that those nodules were to tiny to biopsy, also to tiny for PET to give a reliable reading.

He didn't think there was anything to do other then scanning every 4-6 months and watching for any changes in size.

So we agreed to do another CT scan in April, which came back "no evidence of metastatic disease", but the nodules were still there... The good thing was that they didn't grow, but that could also be an effect of Tamoxifen stopping cells from dividing (my BC was 100%ER/PR+). There was also another 5mm nodule (new) in middle lobe.

Dr agreed to refer me to a thoracic surgeon for consultation. I was lucky to meet a very compassionate surgeon, who understood my anxiety and logic in finding out whatever it is early, regardless of how invasive this procedure would be.

He explained that he would have to deflate the lung and "feel it" with his hands to find any suspicious areas.

The surgery took about 3 hr, they removed about 8-10 wedges, (including lymph node biopsies and old looking scars - anything that was different from a healthy looking lung tissue); during the surgery they found another nodule in upper lung, that they didn't see on a ct scan...(I wonder if it is the same from May scan, that mysteriously didn't show in Dec and April?).

The pathology report confirmed that there was no metastatic carcinoma or any other malignancy present in all those samples.

It was a very drastic way to find out, as recovery is very painful. But I call it a "happy pain".

Most of those "changes" were "inactive already" inflammation caused by pneumonia, which I never knew I had! (As far as I'm aware - I never had pneumonia).

Plus there were some granulomas. Everything b9!

I'm just 16 days out of surgery and doing pretty well. I'm still unable to walk longer distances, lift anything... But the pain is more manageable. Also my lung X-ray looks great!



If I can give you any advice it would be: NOT TO PANIC AND WORRY in advance.

Ask for another scan after you complete your tx and go from there. You have to be firm with your dr about it, as some of them don't want to do any follow up scans. Lung malignancies tend to double in size within 1-6 months (average is 4 months). Make sure that you indicate to your radiology dept to compare images to any previous scans you had. If you will be using different hospital/ imaging centre, please, bring them cd with your previous images. They can upload it before doing the scan and radiologist will be able to look for any changes.

I'm sorry for a such a long post! But I tried to include all details. I know how important it is for me to learn from other sisters experience.



Maggs

My surgeon said he did not take all my nodes.  These were under my arm in the shape of a triangle.  So maybe he only took nodes in level 1.  Is that a good thing?  I guess I need to ask more ? when I see him next.  Some times I get so rattled that I forget to ask impt. ? I know going into surgery, we knew of several that were swollen from the scans, but not 18.  That has left me scared.  I see that you have tissue expanders in also and went through rads.  How did that affect your reconstruction.  I've heard that the rads tightens the skin?????

Aryas,  How many lung nodules did you have?  I know you said there were not concerned about them.  I have two very small ones that showed on my CT scan in April.  My BS would not do surgery until I had it checked by an MO. They kept saying they were 95% sure it wasn't anything, but he wanted to be 100% sure.  So, I had a lung scope and all tests came back  negative.  I am getting ready to under go chemo and my MO wants to do another CT scan Mon. to recheck the nodules. It has only been 2 mos.  Isn't that a little early to recheck?  I just want to get started with chemo, and if it is something, the chemo will kill it!!!!!!

I don't know the exact size.  The lung dr. said they were too small to biospy without possible puncturing my lung.  That is why they went with the lung scope. Trying to stay positive!!!! Thanks so much for your input!!!!!!!