Chemo for Stage 1A?

Sshibal

Hi all I'm new here!

I (35f) was diagnosed in October and had a lumpectomy three weeks ago. I'm stage 1A (T1N0M0), no lymph node involvement, ER/PR+, grade 3, and my genetics came back clean. My tumor ended up being two tumors (one 3mm and the other 6mm).

Right now I'm waiting for my oncotype score and I have consultations with my radiation oncologist and oncologist in the next few weeks, so I just wanted to get an idea of what treatment options are out there before I meet with them. My surgeon said that he's pretty sure I'll be given 4 rounds of TC every three weeks. This would be ideal since I'm currently in grad school and would be able to get chemo over with before the next semester starts. However I have also read that AC-T is used if the oncotype score is high enough.

I was wondering what chemo other people have received who were also stage 1 with no lymph nodes affected and how long did it take? Also what would a typical AC-T regimen look like for someone in my shoes?

Thank you in advance! I'm trying to get some questions ready for my oncologist, so any information or advice would be appreciated!

SarahSmilesatMe

Hello Sshibal - sorry for your diagnosis; but there is a wealth of experience and wisdom here. I also had a lumpectomy, Stage 1; no lymph node involvement. ER+, PR & HER2-. Grade 3. I had a high oncotype; to the right of the curve so to speak. I have a few years on you - I’m 58. The age difference may be one of the many things that differentiates a treatment plan. I had 4 treatments of TC; every 3 weeks; followed by a month “off” and then 4 weeks of whole breast radiation.

My MO and I spent most of our time discussing probability and chemo side effects (both short and long term). It took me a couple of days to get on the chemo train. At one point, my MO simply said that the TC regimen gave me the best odds against a distant recurrence; so there you go, I jumped on board!

As you’re planning, remember the chemo effect is cumulative. After my 1st treatment, I was back on my feet pretty quickly. The 2nd and 3rd each took a little bit longer. By the 4th and final chemo, it took me about 3-4 weeks to bounce back (no energy, tired, food tasted awful, etc). I’m lucky and blessed, because I didn’t struggle thru many side effects.

If you are destined for chemo, make sure you ask about the short and long term side effects and ask for suggestions to mitigate each one. If you haven’t already, search these boards for the chemo combo that is being proposed. Please keep us updated as you learn more. Good Luck!

moth

my ac+t took 5 months in total. I had unexpected complications ( unexpected in the sense that i was otherwise healthy, no comorbidities, fit, no meds etc. The complication itself is well known - febrile neutropenia) and ended up hospitalized twice plus had several treatment delays.

AC+T comes in 2 schedules, normal and dose dense (dd). Dd is faster but obv more intense. If you poke around the chemo threads you will hear people talk about both.

Your age and oncotype score will factor into which chemo regimen is more likely to be recommended. Hth!

Sshibal

Thank you for the reply SarahSmilesatMe! It looks like my treatment plan will be really similar to yours! My surgeon said that if I was over 50 then he wouldn't consider chemo. He thinks my best chance at my age is to be aggressive even if the oncotype score comes back low. I'm also definitely getting radiation and my surgeon thinks they'll probably give me 3 or 4 weeks of radiation. How did you feel after the treatment was over? I will be starting chemo in the middle of this semester and hopefully finishing a month or two before the next semester. I'm really glad to hear that the chemo didn't completely wipe you out. Did you end up with chemo brain or any memory problems afterwards? I'm worried about how it will impact my ability to take tests and do classwork. I'll also be interning at a hospital, so I'm crossing my fingers that I'll have at least a little bit of hair by then lol.

Anyway, thank you again!

ARmom4

I'm also 35, stage 1a. My MO thinks Taxol weekly for 6 weeks (with Herceptin because I'm HER2+). Because the invasive part of my tumor was only 3mm, we're on the fence so he's consulting with the Mayo Clinic to get their input. I'll make a final decision when we meet on March 20th.

moth

Fwiw, I went back to school while still doing rads. No issues with chemo brain - was on dean's honor roll every term. I hope you won't miss too much school time!

Sshibal

Thank you moth! That's good to know. I'm similar to you, in that I'm healthy, fit, etc, so it's scary to think that complications like that can arise. I will definitely ask my onco about that.

Yeah my surgeon said my age was a big factor in deciding chemo, so even if it isn't recommended I think I'm going to go through with it anyways.

I was poking around the forums before you replied and looked up soy and it's connection to ER+ BC and realized that you're the same person who said they were vegan. I'm vegetarian (and I don't plan on giving up soy) and was wondering what food worked best for you during chemo? Did you take any supplements?

Sshibal

Moth-

Omg that's good to know. I freak out if I get anything lower than an A-

Sshibal

ARmom4,

6 weeks of Taxol sounds amazing compared to everything else I've read. I will ask my onco if this is an option for me. I'm crossing my fingers!

ARmom4

It's sometimes called "chemo-lite". You should definitely ask about it. I assume you'll also have Tamoxifen for 5 or 10 years after that since your hormone receptor positive. Let me know what your MO says and I'll let you know what the Mayo Clinic says!

SarahSmilesatMe

Sshibal - I don’t believe I have any lingering chemo brain effects; although my husband may think differently. I did have the chemo “fog” during treatment though, and it got worse with the 3rd and 4th treatment. For me, the “fog” was an inability to concentrate for a few days. I also experienced moments (usually in the afternoon / dinner timeframe) of extreme fatigue - not just “I’m tired;“ but suddenly I would wake up with my chin on my chest and 30-45 minutes had passed. The fog, fatigue, etc. usually rolled in around day 3. I felt great the day of chemo and for a couple of days after. My primary side effect was fever. I had a trip to the ER after my 1st chemo, called the ER after the 2nd treatment, and by the 3rd and 4th treatment, knew what to expect.

Good that you’re wrapping your mind around the possibility of chemo, but I would encourage you to wait for your Oncotype score. Understand all you can about the long term effects of the drugs, your probability of recurrence, etc. and with all these pieces, and your MO’s guidance, you’ll make the best decision for you.

Sshibal

ARmom4,

Yeah I'll have to take Tamoxifen, but I'm not sure for how long. I will definitely let you know what my onco says! I meet with her on the 24th.

Sshibal

SarahSmilesatMe,

Yeah I'll definitely take everything into consideration. I'm so ridiculously prepared for chemo it's almost embarrassing. I bought protein powder, vitamins, wigs, hats, etc. I also got my eyebrows microbladed, scheduled to take most of my finals early, and even got student disability so I'm not penalized for missing class. I'm preparing for the worst, so if chemo doesn't happen then I'll be pleasantly surprised.

NancyHB

I had just started grad school - and was a graduate assistant - when diagnosed (social work), and was able to do AC-T and 7 weeks of rads with minimal impact on school (high Oncotype score). Definite impact on life, but I was okay with that. I noted I sometimes felt a little “off” brain-wise (writing papers or teaching) but honestly no one else seemed to notice anything. I graduated with a 4.0 and don’t feel like I had to “work harder” or differently because of chemo brain or anything. Rads was fairly easy; I went in for sessions first thing in the morning and then went to class. I will say I scheduled as many early classes as possible (or a couple night classes) because by the end I needed a nap in the afternoon. But I still ran three miles every morning before rads (even if a little slower) and continued yoga.

While TC may sometimes be called “chemo lite” because it doesn’t pack the potential heart issues of AC-T (I had no ill effects), it’s still a tough regimen (I had that the second time around because I’d had my lifetime max of Adriamycin the first time). Taxotere is harsher than Taxol and has the small potential for permanent SEs (hair loss/thinning and neuropathy).

Crossing my fingers that you won’t need chemo at all - but if you do, it’s definitely doable. Good luck!

moth

Sshibal - I took hardly any supplements. Many are contraindicated during chemo - though they do admit that frequently the restrictions are based on correlation reports and it's possible that the people taking the supplements had worse outcomes because they were sicker in the first place, which is why they were trying *everything*..... but it's also possible that the supplements interfered with the drug's action. We know stupid old grapefruit juice is contraindicated with tons of drugs because it interferes.

The oncology pharmacists asked for a list of anything I was taking or had taken in past & would consider resuming etc and told me what was allowed and not. I think I only took b12 during AC. B6 and l-glutamine (supposed to help reduce risk of neuropathy) during taxol.

Only thing I'm trying to do this time around is log on MyFitnessPal to keep track of calories and macronutrients. I have a horrible tendency to just nibble when anxious and sick and for a while right after my recent diagnosis I was eating nowhere near enough. I think seeing it written out also helps me id where the holes are - "ooops haven't eaten legumes in 2 days", for ex. There are some diet & lifestyle threads on this board, including some plant based & veg*n ones so hope over if you want to explore that more.

best wishes

Sweettalker52

sshibal - welcome! This community is chock full of fantastic information and fantastic people who can be so informative and so supportive. Look around in the forums for many different threads that talk about the things that are on your mind, and don't hesitate to ask - people really do care. You will see in the notes (my signature) that I'm doing dose dense TC with Neulasta following my lumpectomy. I'm half-way through; chemo. #3 ( of 4) will be next Wednesday. I've had side effects, and I've had very good support from my medical oncology team. If they gave you a number to call - don't hesitate!

By the way, the soy thing is an old wives' tale - look for current research online. Recent studies show no correlation between soy and ER+ PR+ status. It's safe to consume soy, and might even be good for you. I confirmed that with my medical oncology team - be sure to discuss it with yours.

I think asking for Student Disability status would be really smart, and I can tell you are a smart cookie. I don't know how I could have managed law school while battling BC back in the day, but the Fates didn't have that plan for me - instead BC waited until I was retired, and a grandmother. I applaud you for such good planning and preparation. As they say, The More You Know.

I think the descriptions of Chemo Brain (Chemo Life!) here are very good. Since I'm already a Senior, who has her Senior Moments, my husband hasn't noticed that much of a difference! LOL But I do notice that my focus and concentration are not as good, and my follow-through not as consistent. Sometimes I realize that I have been in a "fog" for a few minutes. Then you just get up, shake it off, and go on. Remembering things is so easily taken care of with apps if you use your smart phone - I particularly like Evernote, which can send you reminders, as well as Google Calendar. And we do write little notes with pen and paper around here and leave them for each other. Maybe some of that you can morph into tools for grad students. NancyHB You are amazing, too.

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There are sub-forums of this thread for people who are starting chemo at the same time - which can be extremely informative. You can look back at previous months and you will find people in the same boat. There is also a thread on Oncotype DX scores. A wealth of information.

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You are all amazing! Best Wishes!

Sshibal

NancyHB,

What a coincidence! I'm currently studying to get my MSW. I will actually start my first internship at the same cancer center that's treating me too lol. I'm glad to hear that you were able to attend school, maintain a 4.0, and exercise. That makes me fee a lot better because I don't want to put my life completely on hold for this. Everyone keeps telling me to take it easy, skip a semester or two, and stop exercising, but I think I would go crazy with boredom if I did that. I absolutely love exercising and was even back in the gym 4 days after my lumpectomy. Your post makes me feel optimistic about going through with it. Thank you!

Sshibal

moth,

I'm also using MyFitnessPal! I'm actually at a perfect weight right now, so I started using the app again so I can keep it that way during chemo. I'm taking some pretty basic supplements - b12, calcium + d3, and probiotics, so I hopefully won't have to stop them during chemo. Did the B6 and l-glutamine help with neuropathy? I'll put that on the list of things I should ask my onco.

Sshibal

Sweettalker52,

Thank you for the welcome!

Yeah the whole "controversy" around soy is unfounded, but my mom believes it and won't even touch soy sauce anymore (she was Dx'd 8 years ago with stage III), so I always keep an eye out for articles/information that I can send her to alleviate her fears. She also believes chocolate will exacerbate cancer and unfortunately I eat a lot of soy and chocolate, so lectures me often about it lol.

I also use note apps on my phone and computer and they've been a lifesaver. I will definitely continue to utilize them whenever I can.

Everyone on this forum has been so much more positive than other forums I've visited, I'm glad that I joined!

Sweettalker52

@Sshibal - just checking in. Had my third infusion of 4 yesterday. Didn't start out smoothly. My port was clogged so they put some type of Draino in there to soak while they tried to do a blood draw from my hand and arm. That was a trial. Three people and more than half an hour to get it done. I joked that I should have upped my water intake even more since my veins didn't seem to have any liquid in them.

Side effects tolerable. Slept part of the night, for which I am thankful. Just getting going this morning; will start up the meds routine for today. Have a good day!

Sshibal

@Sweettalker52,

I'm glad it all worked out in the end! I've heard some people say that chemo feels like a really bad hangover, is that true?

You also ended up getting a port? I asked about getting one but the nurse told me that they don't do ports for 4 or less infusions (everyone's pretty sure I'll get 4 of TC). I thought that was kind of weird, because my mom told me to get a port so I don't ruin my veins.

I plan on drinking copious amounts of water if or when I start chemo. Have you tried a half day bottle? It marks out how much water you should drink each hour and by noon you have to fill it up again. I carry this one around with me everywhere: https://www.amazon.com/Cactaki-Non-Toxic-Fitness-Enthusiasts-Leakproof/dp/B077NL73N6/ref=sr_1_16?dchild=1&keywords=half+day+bottle&qid=1584159965&sr=8-16

I had a consultation with the radiation oncologist yesterday (his availability was earlier than the medical oncologist) and he didn't really tell me anything that I didn't already know. I really just wanted to know my oncotype score, but they haven't received it yet which is driving me crazy. My appointment with the medical oncologist isn't until the 23rd, but I want to know the score beforehand so I can get some questions ready for her. Waiting really is the worst part sometimes.

Anyway, I hope you recover quickly!

Sweettalker52

@Sshibal - My medical oncology team was also on the fence about getting my port placed because I am also on a dose dense 4 treatment cycle of TC + Neulasta. However, when I described to them the problems that have persisted over the years with accessing my veins, they agreed that it would be the best. Consider bringing up the issue with them again before you start chemo. I had my port placed the day before my first chemo.

Yes, chemo does feel slightly like a hangover some days - headachy, kind of miserable, grouchy, don't have any energy. The thing they call "chemo brain" is real. It's like a kind of fog for me that blows in, surrounds me for a minute, and then dissipates. It affects my focus, concentration, and recall. I use note apps on my phone and computer and calendars with reminder notifications to keep me on track. There are many other possible side effects, but they vary very much from person to person and not even the same in each cycle. Weird!

Started losing my hair two weeks after the first infusion, as I was told to expect. It was difficult for me. I ordered a bunch of hats and caps from the American Cancer Society's tlcdirect.org as well as headcovers.com and found several other sites with good products and good information and blogs. I was inspired by the blog by Nicki, who founded hatsscarvesandmore.com

I was also told that I would lose eyebrows, eyelashes, and every other hair on my body. That hasn't happened yet. And it may not. We'll see! But I still have a few wispy hairs on my head, now weeks since I started chemo (January 29) since I did not shave it, just cut it shorter than a pixie. If you check Nicki's site, she has great info about shaving your head, etc. She's a cancer survivor and career hairdresser.

Waiting for my first appointment with medical oncology gave me very high anxiety. Then waiting for my Oncotype DX score was also hard emotionally. Then when the score came in, it was still not a clear choice to do the chemo, although the score indicated that I would benefit from chemo. So I went all in. Whatever I can do to improve the chances that I will remain free of BC, I'm all in.

Well I've gone on and on. - have a good day, everyone!

wanderweg

sshibal - I had four rounds of TC and got a port. The chemo nurse I spoke with told me taxotere is particularly hard on veins and they'd need to access a different one each round. I am a needle phobe and that port was a blessing. I didn't experience chemo as a hangover. There are a range of physical reactions and each round I had a couple of bad days (days 4 and 5 for me) and then the symptoms would start waning. I just felt generally lousy for a few days and then tired after that. I really encourage people to take claritin before and during the neulasta infusion - I didn't the first round and had a lot of bone pain. But still, the chemo was manageable. One odd thing is that everything tasted disgusting to me during the bad days and then the next week I had a voracious appetite.

sweettalker - When I did TC, my hair would come back just a tiny bit right before the next infusion and then start falling out again. By the end of it, I was completely bald and lost most of my body hair, but never fully lost my eyelashes or brows. And oh yeah, chemo brain is real!

Sweettalker52

Wanderweg ~ Thank you. I will not worry about my hair loss at all from this point forward.

I completely agree with you about taking Claritin to prevent Neulasta painful side effects. I tried Zyrtec first cycle and it did not work. Worse night of chemo (Days 5-6) nothing that bad since then. Claritin second round and success! So I am sticking with daily Claritin until the end.

Best Wishes, everyone.

ARmom4

Hi Sshibal! I wanted to let you know what Mayo Clinic recommended for me. They said Taxol with Herceptin weekly for 12 weeks then Herceptin every 3 weeks for a year. Then Tamoxifen for 5 years. My MO was thinking Taxol for 6 weeks but Mayo cited a study of early stage cancer and said 7 year survival with 12 weeks is better. Hope that's helpful!