5mm tumor, ER/PR -, her2+. Chemo or no chemo?

Brightness456

Hi everyone. I had a lumpectomy earlier this month and finally got my pathology results. My tumor was originally thought to be 7mm, but they have now decided it was actually only 5mm, but was within a cyst which made it look bigger. My ER/PR was at 0, so it's negative and my her2 was negative via ISH, but later determined to be positive based on a fish analysis, so I'm now considered her2 positive.

My MO said because my tumor was only 5mm, it's up to me if I want to do taxol and herceptin and also radiation or just radiation. On the one hand, the SEs scare me pretty bad. I know some people have bad SEs while others don't, but that's a scary risk. On the other hand, I want to be rid of this forever.

My MO said the difference between doing chemo or not will be approximately a difference of 94% rather than 98% chance of no recurrence within 3 years. I so want to say no chemo, get through the radiation and get on with my life, but it's not a decision to make lightly, so I'm asking for input. I know the decision has to be mine alone, but I do appreciate input from others who have been through this journey.

Thank you in advance for sharing your thoughts

beach2beach

Hi Brightness,

Im glad it turned out to be a tiny tumor. My surgeon said to me that in many cases when its 5mm and under they don't usually recommend anything else but I don't know if that is across the board on all prognostic factors.

It is a very difficult and personal choice. Many would throw everything they have it if the chance of recurrence was just a 1% less difference with adding chemo and/or rads and some would rather forgo any possible side effects and live with the 1% or whatever increase.

I'm sure there will be many posters coming on here with similar stories on making that type of decision.

I would just say to listen to what your gut tells you also as well as the facts and weigh in all pro's and con's.

SoCalBC

My tumor was 2mm and I didn't hesitate to do Taxol/Herceptin. BUT mine was multi-focal, with ~13 extremely small, mostly micro-invasive, pieces (of which the 2mm one was the largest, of course). So it's not exactly the same as your situation (not that any of us will ever have the exact same situation). Taxol wasn't that bad. I had minimal bottom-of-foot numbness that I still have (finished early June), and now am experiencing some foot pain and leg weakness. Hard to say exactly what that's about: maybe because I'd become pretty inactive toward the end of chemo and the month afterward and now am trying to get back into it, or maybe even because of weight gain during/after chemo causing pain. At any rate, it's not debilitating or anything and I'm sure it will get better. No side effects from Herceptin-only so far from what I can tell (unless that's what's contributing to the pain/weakness, who knows).

Beatmon

I had Two extremely small Idc less than 5mm total....13 cm insitu, had BMX...no further tx recommended (her2+) only.....For me it was wrong decision. 2,years later, metastatic lung. Wish I had done it a the beginning. At the time, it did not meet protocol. Now I'm a lifer

Brightness456

Thank you for responding. I'm so afraid right now. I just want this to all go away, but of course it won't. Beatmon, I'm so sorry for what you've gone through.

One thing I don't understand is why we can't have just the herceptin. What does the taxol offer that herceptin doesn't? It's easy to find lists of SEs from taxol, but not the benefits.

RebzAmy

Brightness, I would have the chemo because of being HER2 + and just to mop up any cells that may be around that are too small to be measured. As Beatmom has mentioned above, she chose not to and now wishes she had done it. Chemo is very doable - and there are drugs to counteract the side effects. Good luck.

MicheTheVanquisher

I'm in a similar situation to Beatmon. At the time of my initial diagnosis of extensive DCIS but no tumor I opted for a Mx.Then pathology from my Mx said < 0.3cm micro-invasion with no lymph node involvement. I wasn't offered herceptin (wasn't protocol with such a tiny bit of HER2+ 5+ years ago). 18 months later I moved and changed Oncologists. Sure enough she found liver mets on a body scan. I wish I'd been offered at the least Herceptin initially. Perjeta hadn't been approved yet though it was by the time I had mets. My Oncologist consistently reminds me that HER2+ is not something to fool around with.

Taxols can permanently impact quality of life so in retrospect I wish I'd had the option for a year of H&P. Would have had to weigh the added benefit of Taxotere. After mets diagnosis I was glad the Cleopatra protocol had been approved.

Brightness456

Well I've decided to get the taxol, herceptin and radiation. I can't tell you how much I appreciate the input and info I receive from this site. I'm scared and I've been crying a lot the past few days, but I've got grandchildren to help with and I need to give this my best effort.

Still, I wonder if the SEs are too hard on me, at what point might it be safe to stop the taxol? I know 12 weeksis what the MO recommends, but she couldn't give me a reason other than it's what's done, it's a protocol. Honestly, even she didn't sound committed to the number 12. I suppose I'll talk more with her when we meet in a few days.

Tinyfrog

I did taxol/herceptin, and I probably complained a lot while I was on it, but don't remember so much now. But in retrospect the biggest SE that came to mind were the extreme hot flashes every 30 mins that prevented my sleeping until my cycle came back 5 weeks after chemo ended. I was pre-menopausal, so the chemo gave me severe menopasual symptoms. If you're already menopausal, I assume you won't have those SE. I think they give you a triple dose the first day, but then they let up after that, so it does get better. I didn't have any heart issues, brittle nails, or neuropathy. I did start losing my hair after week 5. I was never completely bald, my hair was continually growing in as it was falling out. I did not shave my head. I stopped all vitamins/antioxidants during radiation because it's contrary to treatment, but then started getting neuropathy. I started back on B12 shots and B complex, and neuropathy is subsiding. I asked for the lowest steroid amount in infusion once it was known I was not allergic, because the steroid prevents you from sleeping. I was able to drive myself to/from all of my infusions, except the first , when you're asked to have a driver until you know how the bendadryl feels on you. I hope that helps! I've heard alot of people continue working while on chemo too. It's doable!

TTW

hi I have exact issue. No lymph small tumor .3 and clean margins. They say under .5 no chemo but I want to rid myself of recurrence. What did you decide to do? SE

Meow13

you can never rid yourself of recurrence by doing chemo. 98% vs 94% not very convincing to me.

Brightness456

Hi everyone. I ended up making through 6 of 12 taxol treatments before neuropathy became too much of an issue. After discussing it with my doctor, I stopped taxol. I’m still doing herceptin and hoping for the best.

Meow, I’m not sure what you mean. Can you explain your thoughts in more depth

Meow13

I mean doing chemo will never guarantee you won't get a recurrence.

It would be more convincing if say you had a 50% of recurrence and doing chemo would give you an 15% of recurrence. The 4% difference between 94% to 98% wouldn't personally be compelling enough for me to do chemo.

VL22

With aggressive cancers like HER2+ And TN that are more likely to metastasis, I think doing all you can is the educated choice.

Meow13

VL, brightness quotes a 4% difference, it kind of speaks for itself. Perhaps, being her2+ even though small is not a 6% chance or recurrence like she was quoted and with chemo it is reduced to 2%. Because those numbers don't sound bad to me, like an aggressive cancer.

chocomousse

You guys are scaring me. I'm 3 years post with no mets. Didn't do chemo, radiation or hormones. My doctor told me that the greatest risk of recurrence happens within the first 2 years, after that, it drops significantly each following year. By the 3rd year, the recurrence risk is 25%, then 12%, then you're practically home free at the 5 year mark. My largest IDC tumor was .3cm, grade 3.

Meow13

Well, that is true more for triple negative BC. The sharp drop off doesn't seem to be true for hormone positive cancers. You are grade 3 so I would think 2 years no recurrence is encouraging after 5 years another drop in risk.

I'll see if I can find a chart. There aren't that many in this group, this was on BCO not sure where.