So many lymph nodes

I usually just read posts rather than post myself but wanted to let you know that I had 28 nodes removed and all of them had cancer in them.  That was a year and a half ago and I'm doing really well.  

I had a single mastectomy (with no reconstruction), heavy duty chemo and radiation and did fine through all of it.  My oncologist said the chances of it coming back are somewhere between 30 and 40 percent which isn't great but I try to focus on the flip side of that which is my chances of it not coming back are 60 to 70 percent.  In the last analysis, it either comes back or it doesn't and unfortunately no one knows whether it will or it won't in any individual case.

I had some swelling in the arm they removed lymph nodes from right after my surgery which got worse once I started chemo.  This really freaked me out but I got right in to see a PT and it never got out of control.  Over time the swelling decreased and I'm probably the only one who can see a difference in my arms now.  I wear a sleeve which I find very comfortable and haven't had any problems with my arm despite the number of nodes involved, working out regularly and lifting heavy objects.  When I was upset about my swelling in the beginning, my PT kept on telling me that it was impossible to know whether it was caused by the treatments and was temporary or if it was really lympedema.  In retrospect, she was exactly right and my lympedema issues turned out to be mild (although I do take precautions). 

It's been 22 months since I was diagnosed and physically I'm doing so much better than I expected.  The main challenge I have is mental--the worry of recurrence--but even that has gotten better as time goes on.

I remember when I got my path report after surgery.  I knew going in I had at least 4 positive nodes (from my mammogram, ultrasound and biopsy) but it took awhile to face the fact that I had 28 positive nodes.  From reading BCO posts, I know there are women out there with similar diagnoses that are doing well 12 to 25 years out and that gives me hope.

I wish you all the best with your treatments.  I think there is a very good chance you will be OK after they're over.

I too was told, probably stage II, woke out of surgery and discovered positive nodes. Stage III. It was hard, I remember being unable to sleep just thinking over and over about the positive nodes. Probably as soon as I recovered from radiation (after chemo), I demanded (nicely) to get PT and lymphedema therapy and it has helped tremendously with my issues. It was the worst year of our lives.

Actually what I wanted to say is that, this September, I will be 3 years out from surgery. My life has slowly, very slowly returned to going back to work, worrying about the bills and how to budget our money, worrying about my son's past scarlet fever (sigh), enjoying trips to the park, shopping at my favorite store, enjoying my time with my husband. I think of myself less and less each day as a Stage III gal. Of course when the scares come, I am on high-hot-mess-alert but for the most part my life has "normalized" in a sense.

It is rough but there is light at the end of the tunnel. The tunnel may be long and the drive extremely rough but there is light....I wish you the best in your journey. People may say that you'll be okay, but they don't understand the fear and uncertainty and the actual realities, this is something that we all struggle with and you will have to deal with in your own way. We are here for you.

I also went into surgery thinking stage II and came out a III with extra capsular extension (cancer spilling out of the lymph nodes).  I am almost 7 1/2 years out from diagnosis and so far so good.  I seriously did not think I would be ok but here I am!

I was happy that I was only Stage III when I came out of surgery.  i knew that I would be at least Stage III but to expect Stage IV.  

I'm IBC so I did neoadjuvant (4 DD A/C) then surgery.   Then came adjuvant (12 weekly Taxol) and 25 rads.  Femara/letrozole too.

Please see a CERTIFIED LymphEdema Therapist - not some pT that claims they know "all about LE" (there are some PTs that are CLET).  My CLET guy also has his Masters in OT and the PTs caan not do anything with me without clearing it with him.  

It seems like many of came out of surgery with the shocking stage III diagnosis. Many of us are here doing well years later.

Arya, crappity-crap! No wonder you feel slightly shell-shocked. I did not have as many nodes as you, but I had neo-adjuvant chemo, and because the tumor shrank a lot, we had hoped it cleared the nodes too. It didn't. 

I allowed myself a good freak-out for an afternoon and then you carry on. I had some more chemo, rads, a hyster and am now on letrozole. The treatment is not fun, but we still managed to have a good time during all of that.

As others have said, why, how or when this stupid disease decides to come back or not is a complete crap-shoot. That sucks, of course, but it also means that it really doesn't do any good to go too crazy over it. Make each day a good one. Enjoy. Eat a healthy diet. Get some exercise. Have fun and don't sweat the small stuff. It may not make our lives longer, but it will make them better. 

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Arya, I had a lumpectomy and was DX as Stage 1 but the Path report following the surgery showed a micromet in my SN so I went to Stage 2. My BS was surprised too which didnt make me feel warm and fuzzy and he told me that would get me chemo. It did not. My ONC said it was only a micromet and ordered the Oncotype test. I am so glad she did. It came back at 11 and showed my cancer to be non aggressive and actually smaller than first thought. I had 33 RADS treatments and taking Tamoxifen. It is a crap shoot and there are no guarantees. My sister is Stage 3 LDC. She had a MX but did not have to have RADS or chemo. She is on Arimidex. I remember when my mother was dx in the late 1980's we were told you didnt want BC in the nodes; my mother didnt but she had a mx anyway. That was then, this is now. What was a dire dx then isnt as dire now. BC is the death sentence it used to be. All we can do is what we are doing. Nothing is going to completely un-scare us from a recurrence but you dont want to live your life with the fear factor controlling it. It is something you have to work on every day. Time is our best friend. Good luck. Diane

My friend went from stage 3a to stage 3c after surgery indicated extracapuliscular extensions and clumping together of nodes. She's ER+/PR+/Her2- and is in her 12th year.

I'm a fellow 3c'er, and although I didn't have as many positive nodes, I did have an intermammary node light up and vascular invasion.  I just reached my 3rd year out from the end of treatment.  There were times when I never felt I would make it this far.  This board was my lifeline throughout the past few years.  You'll find stories of hope from other stage 3 women who are celebrating 8 years, 10 years or more.  If the stress or worry become too much, come back and post.  I promise you'll feel better.

My standard advice is don't Google.  The information on the web is outdated and doesn't reflect the current treatments.  Be sure and ask your onc about more cutting edge treatments like Zometa.  The advantage of being stage III is there is no wishy washiness when it comes to treatment.  They will throw everything at you.  Chemo is not quite as horrible as you may imagine.  There are so many excellent drugs to handle side effects now. 

Steroids are often given along with certain chemos, and cause extreme emotional havoc.  I felt so horrible on steroids I begged my onc to lower the dose.  They were "dementor" drugs for me.  They took every fear and magnified it 100 times.  Often they cause agitation, mood swings and sleeplessness.  You are wise to consider taking anti-anxiety drugs.  They can be incredibly helpful.

It won't be easy, but will come out the other side.  We all understand and are here to help. 

Maggs, "free Brazilian" ROFL!

Arya, I am with the others about the chemo. I was scared out of my wits, and then it just wasn't anywhere near as bad as I had imagined.

Yes, I lost my hair, but that turned into a win, since I had never had short hair, and it turns out it really suits me and that I really like it.

As for nausea, I seriously never had any. My onc had me on a strict schedule of anti-puke meds and they worked. I did get "metal mouth" for a while (foods taste like sawdust), but it passed. I had some intestinal mayhem a few times, but learned that if I took probiotics religiously, this, along with trush, was vastly diminished. The steroids didn't bother me, and they gave me neulasta to keep my blood counts up.

During the first 4 rounds (prior to surgery), I walked my dogs in the park every morning, wearing a big hat (not supposed to get sun during chemo) and it was such a calm and beautiful start to the day. Exercise helps (studies prove it and everything) against the fatigue and general yuckiness of chemo. In general, be good to yourself. I bought myself treats (perfume, clothes, SHOES ) and if there was something I didn't feel like doing, I had the perfect excuse, "oh, the ... cancer ... chemo ... you understand." Practice looking tragic for those moments, it can be quite fun. That way you can conserve your energy for the things you actually enjoy, see?

If you can at all afford it, hire a cleaning lady to come muck out and change bed clothes once a week. If you can't afford it, when people ask what they can do, ask them to come clean.

Here is a picture of me, after BMX, and between chemo #4 and #5 on a trip to Paris with dh and a good friend. Yes, I was bald, but I walked for hours every day and we had a great time.

Arya, I had 6/11 positive nodes and when I first found out I felt doomed.  Now nearly two years later I still worry at times, but console myself that I did and am doing everything I can to keep it from happening again.  Regular bikram yoga throughout chemo, rads (it's part of my life so I can't give it up just because of that! ) might have protected me from LE...I have a bit of swelling under my armpit from time to time but have flown 4 times since my surgery, and no problems.  I have used the massage for LE every once in a while and it immediately relieves the swelling.  I know--this whole thing is a shock.  But I felt like I sailed through surgery, chemo and rads and it's possible you will too.  I was only bald for about 5 months then my hair started growing in fast...by the time I was finished with chemo I stopped wearing a wig (although my hair looked like a buck private's head, I had hair again). 

I bet you'll do great. Keep us posted.

And Momine, you are a beautiful, beautiful lady....

Thanks ladies, although I wasn't fishing for compliments. I just like that picture, because it was good time in spite of the stupid treatment, no hair and all the rest.

You guys are a Godsend! I was diagnosed mid November. I am iiiA, 7 of 26 lymph nodes pos, grade 3, 10 centimeters, ILC, est and progesterone pos, and her neg. I had 8 dose dense treatments of ACT as neoadjuvant and am now 3 weeks out from unilateral mastectomy with an expander in. I will soon star radiation and tamoxifen. I'm 54 and had not gone thru menopause but obviously have now. I met with my oncologist yesterday for first follow up since treatment end and surgery. I've been scared because pathology from surgery showed that the tumor responded well to neo chemo but the lymph nodes wer still alive and kicking, minimal response. Since then I've convinced myself that that is making me much more likely to metastasize/recur. I did look at those silly survival rate numbers and they keep dancing around in my head. I've been reading the threads since December and now joining. Thank you all and prayers for each of us! I would appreciate any and all feedback from those of you also here.

Terry