Chemo or No Chemo?

Kathy - that IS a lot! It indicates that cancer was found in all the nodes they removed.  You have nodes in other areas (intermammary, supraclavicle, etc).  If ALL the nodes removed by your surgeon were cancerous, then it seems likely there could be cancer in other areas of your lymphatic system.  The only way to know would probably be a PET scan.

If my pathology had shown cancer in every  node, I would be worried. 

Well, it's great news that nothing showed up on the PET scan.  As for microscopic cells, it's hard to know for sure.  Have you had a CA 27.29 test?

Kathy, I had an chest/underarm MRI and a chest CT scan too, prior to my surgery, and neither showed my 11 cancerous nodes. Everyone on my medical team thought my cancer was contained in my breast. They thought there was a 50% chance I wouldn't even need chemo. But then I had surgery and they found macrometastasis in 11 nodes. My largest node tumor was bigger than yours but I forget just how big. I think 3cm. And NOT visible on the MRI.

The infected nodes were a BIG surprise. Now, I did not have a PET scan. The onc said with low grade cancer (I'm grade 1.5) they can easily give false negatives. 

Have you said where you are located? If you want to say, people can give you recommendations on where to go for a second opinion. Personally if I were you I would ask to have more lymph nodes removed. Especially if you are not having chemo, you want ALL the cancer cut out of you. My surgeon removed all level 1 and level 2 lymph nodes which was about 25 or so nodes in my case. I do not have lymphedema (at least not yet). Not everyone gets lymphadema. In fact my physical therapist said fewer than 50% of people who have axillary nodes removed get lymphadema.

I recommend cancermath.net. It's done by Mass General in Boston. It allows you to calculate the statistical chances of your being alive in 15 years with and without chemo. Be sure to pick the Therapy Calculator. Try it first without the chemo therapy option and then with. Choose one of the third generation chemos - TAC or AC+T (whichever your doctor does). Pay attention to the yellow line, which is the chance you'll die from something other than cancer, and then the dark-red (almost purple) line which is the chance you'll die from cancer if you HAVE the treatments. I think you'll see there's a pretty big difference between chemo and no chemo. PM me if you have questions about using the calculator.

Hello,

I am new to this forum, my mom ( 49 ) was diagnosed with BC- IDC Stage I back in October, after many months of worrying she is now done with the surgeries and peacefull on Tamox with of course the dreaded side effects. I am a Med Student in Michigan, and have had my share of learning knowledge as well as the painful experience of going through BC with my mom.

Kathy, as per my humble "med student opinion" what we are taught in school is that "if cancerous cells are found in the lymph nodes they can be found anywhere and everywhere" see the problem that we have now even with PET scans and MRI's is unfortunately we cannot see micrometastasis in all body organs, if you were my mom, I would tell you Chemo is worth it in the long run, although you may have some sensitivities, you may tolerate it well, becasue many women do! There is more to chemo then just killing the "potential" cancer cells, the drugs prevent "receptors of activating cancer cells" as well as the Chemo drugs stop the already activated cancer cells from undergoing further proliferation. 

Regarding lymph nodes, I had level 1 and 2 removed, and there were 21.  Everyone is different.  Personally, I would look to chemo and especially radiation to take care of any additional node involvement, especially with a clear PET scan. 

Hi Kathy,

You were wondering if the AI that you're taking is sufficient to control/destroy the cancer you have now. Obviously there's no way to know for sure but I want to explain what happens in Stage IV to give you more to think about.

What Stage IV ladies discover is that no tx works forever. Those of us who are ER+ are able to control the disease with AIs for a while. Eventually the cancer finds a way to deal with the tx and grow, so then it's on to the next AI, and the next, until the AIs don't work any more and it's on to chemo. In your case, since you're seeing shrinkage of the tumor with the AI it's obviously working. Unfortunately, no one knows for how long. What you have to decide is if you want to gamble that the AIs alone will destroy all the cancer or if it would eventually grow and possibly send you into Stage IV.

My onc told me that when I finished surgery I had a 50% chance that the cancer would metastasize and that chemo and rads brought it down to 20%. I had 6 nodes with cancer, half as many as you. BTW, he did not do this as a scare tactic since he told me this after surgery, chemo, and rads were over.

Am I sorry I did chemo and rads since I did develop mets? Not at all. I have one metastatic lesion in my sacrum. If I hadn't treated the cancer aggressively I strongly feel that I would now be dealing with a far more serious metastatic situation than I am. My onc refers to my disease as a chronic condition.

Yesterday I met with my BS since I'm going to be doing a prophy mx on my non-cancer side. We discussed SNB and one of the things he said was that there is no imaging that is really very good for seeing what's in the lymph nodes. So that's something else to consider.

Talk to your onc about your concern that the taxanes are ineffective for ER+ cancers. I have heard other people on this site say similar things though I've never seen the studies that show that. The ones I've seen actually showed favorable response. Also, if you like anecdotal evidence (I like to see it though I won't base my final decisions on it) then read some of the things in the Stage IV forum from women who have Stage IV ER+ mets and get very favorable responses to the taxanes. Those are measurable responses.

And about your age - I'm 61 (was 57 at dx) and I certainly don't consider myself old. My mother did chemo at 78 and did well (she's 86 now and no mets).

There's no absolute proof that a treatment will or won't work in your particular case. All you can do is take the information you have and come to the conclusion that suits you.

It's never easy, is it? Best of luck.

Leah

Kathy after you click paste a little window opens up reading ALLOW or Don't Allow....

Sometimes you have to click on allow more than once. to paste the link or pictures.

Good Luck.

I have a question. I did take chemo, rads and am doing arimidex. One thing mentioned to me is that chemo may not work in my situation,  ILC and ER+. The question I have regarding the oncotype is even with the 12 nodes positive and the lower oncotype doesn't this still signal that her cancer is not very aggressive and she still has a high chance of it not going anywhere. I don't understand why the magic number of 3 lymph nodes, why the big change from 3 to 4...etc. Most calculators don't have a big change when you go from 3 to 4 lymph nodes. They go up with each lymph node but not always a large amount. Adjuvent online uses 1 to 3 and then 4 to 9. I am confused.

Don't waste brain space on alternative garbage like Gerson.

Shoving coffee enemas up your backside won't save your life.

(PS - do the chemo.)

Thanks Kathy!

greenfrog - I found Predict last week, nice website I thought.