Should I get Chemo?

muffet74, I normally don't offer opinions when someone asks “should I do x" because my experience is limited, and because so much of this comes down to personal choices. But I read your post and have to respond. Yes, you absolutely should get chemo if that's the recommendation you are getting.As Beesie said, there's no way you could know for certain you “need" it until down the road if it metastasizes. You don't want that. I am no expert, but I did do a lot of research when I was looking into various treatments, and in your case, there's no doubt I would do it. Your tumor is large, as Beesie points out, and it is an aggressive type. The point of chemo as I understand it is to attack any random cancer cells that might have broken away from the main tumor. The fact that your nodes are negative does not change the possibility that some of those cells could have escaped and are sitting out there waiting. You don't get a second chance on those.

Chemo is not fun. No picnic. But it's not like the movies, at least it was not in my case. It is doable. You can live your life while doing it. Yes, it is completely worth it.

One last thing....I get the feeling that when you say “since I don't know if I need it" that you maybe have an idea that you can just do it later if you find you need it (I.e, if it comes back). It doesn't work that way. There's no do-overs on this. I also wonder if you are getting input from people that suggest the doctors are only recommending chemo to make money off your diagnosis. I have people in my life with that type of suspicion of the medical community as well, so I know what that's like. If you are uncertain, you can get a second opinion. I'm guessing though with your diagnosis, every medical opinion will be to do chemo, but you can certainly get another opinion if you need that.

The bottom line is, waiting until “you know you need it" is just not an option you have. Cancer just doesn't work that way. You need to understand that, whatever choice you make.

Edited to add, because you are ER- you also don't have the option of doing hormonal treatment after. That's another reason to seriously consider the systemic treatment options you do have.

muffet, I hope my post didn't scare you away. I know it's not what you wanted to hear.

One thing you can do to better understand how much you would benefit from chemo and Herceptin is to use one (or both) of the on-line models that are available, CancerMath and PREDICT. With both models, you can input your diagnosis to first see your mortality risk estimate without additional treatment. Then you can click the box to add chemo to see how much of a difference it makes. In PREDICT, you can also click to add Trastuzumab (which is Herceptin) - CancerMath does not present this option although the use of Herceptin might be embedded in the chemo figures (I'm not sure about that but when I've compared in the past, the CancerMath mortality estimates after adding chemo for HER2+ cancers appear to be comparable to the PREDICT estimates after adding chemo + Herceptin).

CancerMath presents mortality/survival estimates at 15 years; PREDICT gives you the option of 5, 10 or 15 year estimates. With PREDICT, one of the inputs is Ki-67, which comes from the pathology report but is information you may not have. However with a grade 3 cancer and being PR-, it's quite likely that your Ki-67 will be "positive" (i.e. above 10%). To make it easy to interpret the results, with CancerMath I'd suggest that you use Pictogram as your 'Display As' option (drop-down menu near the top on the right side of the page) and with PREDICT, where it shows RESULTS (bottom right), I'd recommend Icons.

http://www.lifemath.net/cancer/breastcancer/therapy/index.php

https://breast.predict.nhs.uk/tool

You said that your MO told you that there is a 40% risk that some rogue breast cancer cells might be floating around your body. Using these models, you can see if they predict something similar, and if so, how much you will be able to reduce this risk by having chemo and taking Herceptin.

muffet, I also hope I didn't scare you away or come on too strong. I rethought my post after I made it, and perhaps should have worded it differently as I really am not an expert. All these decisions really are quite personal, and everyone has to make the choices they can live with. I just really worried you had the wrong idea about chemo, that you would be able to “do over" later down the road if you happened to come down on the wrong side of that 60/40 chance your doctor told you about. Gosh how I wish that were true, that life and also cancer treatment decisions had an “Edit/Undo" button. I also know what you mean about not being able to convince yourself you have cancer. I distinctly recall getting out of the shower shortly after my diagnosis and just “KNOWING" in my soul that none of it was true. Whatever you decide to do, know that there are a whole lot of us here who are rooting for you. And know that you are stronger and more capable than you yet know.

I had a friend who had a double mastectomy and chemo ten years ago. She was told her lymph nodes were not involved. Six years later she found it had spread to her bones. She was stable for four years and now it’s spread to her brain. I would attack this with everything you can.

Just to chime in - I am HER2+ metastatic, my two cents is to take the chemo.

Do not gamble. You would not want to be where I am.

The chemo you will get is doable for most people who are in general good health outside o the cancer.

As Beesie said, the chemo-Herceptin combo has pretty much been a miracle for HER2+ people. Huge game changer. (Even for those of us already in Stage IV but so much better as a “preventative measure”)

Good luck in making the right choice for you.

smc123--what a kind post; thank you very much. I'm sure your words help many who are facing chemo and it is sincerely appreciated. I want to get the first session done so hopefully I can relax and settle into the treatment plan. Thanks again.

I'll just offer the phrase I first learned on this site. It works for all phases of cancer treatment, and many other things in life.

You don't have to be brave, you just have to show up.

Ladies,

It is disappointing to hear that you have cancer especially if you’ve worked hard to stay healthy. Although you are most certainly doing yourself good by maintaining a healthy lifestyle, it most certainly does not guarantee you won’t get cancer! I wish people would look at a healthy lifestyle as a risk reduction factor, not prevention. There are a multitude of factors, some known, some yet to be discovered that might explain why we get breast cancer. Take care.