Chemo VS no chemo: early stage ER+, HER- Grade 2 cancer
After my lumpectomy I was recommended chemo by my MO, but from what I understand about the tumor board discussions it doesn't seem to me like a strong recommendation, and the MO also said we do whatever I feel is right. As a result I am going back and forth on whether to do chemo or not!
I had a 45mm tumor and 2 lymph nodes removed, 5mm of clear margins and the lymph nodes were clear. The initial biopsy results were validated by the histology report, ER+ 95%, PR+25%, HER-, Ki-67 10%, Grade 2. We did OncoDX and I scored 28. No genetic mutations identified. Since I'm only 36 I suppose the chemo convo makes sense. It started as a (misdiagnosed, sadly) fibroadenoma, so the fact that I've had it for probably 2 years without any lymph spread also tells a positive story. I had a PET scan too which was clear.
I see the MO again next week and will want to clarify some of the remarks he made on my Ki-67 being high as this was his main concern (he will have the full OncoDX report then too - clearly I'm dealing with some trust issues and might seek a second opinion although it doesn't change the core decision chemo vs no chemo as I believe anyone would at least offer it given the above.)
The proposed treatment: 4-6 cycles of TC followed by radiotherapy x 20, and finally ovarian suppression and AI (exemestane or whatever it's called).
I've looked at both Predict and OncoDX. OncoDX says my 9-year risk of distant recurrence with hormone therapy is 16% and 11% with chemo. Predict says 10 yr survival is 87% with hormone therapy, chemo improves it with 1.4%-3.3% (the chemo benefit seems to increase slightly more with time, so for 15 years OS is 82% w chemo). Yet statistics are just that… statistics. Kinda useless.
Pros for doing chemo:
- It's temporary, a shorter treatment regime, it would offer a limited yet meaningful improvement, more so in the long run
- I try to keep an open and positive mind about the following hormonal therapy but also realize I might not be able to stick with it, which would then leave me with only surgical + radiotherapy benefits if I didn't do chemo now which would suck
Cons for doing chemo:
- I'm seeing conflicting/unclear information about the benefit of chemo for my situation and it seems like a high burden of emotional stress to go through for a limited benefit that does not even eliminate my risks (I also know this concept is wishful thinking!)
- I had my implants removed during the lumpectomy too and am already dealing with enough physical change, losing my hair I fear would be super distressing for me (again, this is in the context of the limited benefit)
- I lost my mom to lung cancer 5 years ago and she did very poorly on all chemos she ever got. I have a hunch it would be physically too tough for my body to justify if it's not giving me a substantial improvement. I'm otherwise healthy on paper but this is my intuition
Advice and thoughts welcome from anyone who's been on this crazy ass journey!
Comments
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Pinkpommom,
You have a lot to consider and you have already done a good job of evaluating the pros and cons. I love your take on statistics. They are a great look at how patients did in the past but have no predictive value at all. My story is similar though my bc situation is quite different.
I was essentially stage IV from the beginning (de novo) . I had a single bone metastasis. My mo recommended radiation to the bone met and taking an AI. I sought a second opinion and chemo was recommended though they said my MO’s proposal, rads and AI, was reasonable. I am the kind of person who tends to do the least harsh/invasive things first so after some thought went with rads and an AI. My mo agreed and I understood that if I had progression then chemo would be the next step. I know many want to hit it hard and throw everything but the kitchen sink at it but that didn’t seem like an approach I was comfortable with.
The outcome? I just passed the 12 year mark with no progression at all! I realize I am a unicorn at stage IV and why I have done so well is not known. Perhaps it is just luck. What I would say to you is to be sure that you have no regrets about whatever treatment you choose while understanding that there are no guaranteed outcomes. Take care
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Thanks for sharing your experience, it's really helpful to read.
I have read about situations where OncoDX results indicated worse OS with chemo than without, so I understand the toxicity of it is factored in, but survival is not everything - QoL is huge for me. I was dx'ed with ADHD and medicated less than 2yrs ago which was life changing for both my emotional wellbeing and objectively my life trajectory, so I am more on the side of less is more.
However, that's also what speaks for chemo - short term pain VS multiyear hormone therapy that may impact me harder. Then again, hormone therapy seems to be the more efficacious treatment in any case, and I guess I'd have alternative options if the first drug/combo doesn't work.
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Hi all - I wanted to update this thread to share what happened next with anyone who finds this thread in the future.
After a lot of back and forth I ended up getting a second opinion and started TC chemo with my new care team. I'm currently 5 days out from my first infusion and it's been so much easier than expected. The fear of chemo was definitely a lot worse than chemo itself!
As for deciding - I was very torn and for a week or so wasn't gonna do chemo. My previous oncologist really pushed and rushed me to a decision which I didn't like. I just didn't feel I could trust him with my life, so I got a second opinion and met my now oncologist who walked me through her outlook and said in her eyes I'm high risk and she'd recommend chemo. She was able to talk me through the different factors that gave me peace of mind making a decision, in summary:
- I had read a lot of studies about the issues with causation/correlation of chemo vs chemo induced menopause in premenopausal women - she confirmed that this is a valid topic but also added that
- It is also believed that tumor biology in younger women inherently is different and more aggressive than in older women and
- That the concentration of high risk oncoDX scores sit in the 30s, so my 27 score is high risk, end of story
What I noticed during my "no-chemo" time was that I felt super anxious about it. I eventually came to the conclusion that living with that anxiety and fear for the rest of my life was too high of a price to pay. So when I immediately felt comfortable with my new oncologist and her approach I scheduled my first infusion then and there and it's been the best thing I did! I feel a huge relief, no doubt or uncertainty that I'm doing the right thing. In my mind I have decided that I will simply be cured after I complete my treatment program.
As for the chemo itself…
I am doing 4-6 rounds of TC chemo (taxotere and cyclophosphamide) in 3 week cycles and I'm cold capping to see if I can keep some of my hair and avoid the full shave! Haha! I'm having a picc line inserted before my 2nd infusion, but did the first one via IV just fine. I did have an allergic reaction to the taxotere, but it was over before I knew it because of the fantastic nurses who were right by my side in seconds. I felt surprisingly unbothered by it all and had no issues at all getting the rest of the treatment. The cold cap (my clinic has dignicap) didn't bother me either, it was not at all bad and all of the women who were in for treatment used the caps and still had some hair.
I woke up the day after feeling "is this it?" and same the day after that. I am getting a shot called Zarxio for WBC, and I have to take it 4 times - once daily from day 2 onwards. The first day I took it I had some bone pain - or rather it felt like being really sore from a workout. It was over within a day and ibuprofen did the job well. I also felt a bit wonky and had some pretty insane dreams and headache which was probably the worst I've felt so far but not bad, just unpleasant in that sick-like way! I just took an ibuprofen and went to bed early and was very tired the next day, and admittedly nervous for shot 2 but I felt completely fine after that one and assume the same will be true after my 3rd today.
Overall I've thought "is this all" more times than I care to admit, I don't want to jinx it! But it's really really been doable so far. I've been off work for the week but have been cooking dinner, taking the dog out for short walks, doing laundry, more or less going about life as usually except staying home and forcing myself to rest. If anything it feels a bit like having a bit of a hangover but nothing worse. I also started rinsing my mouth in salt water the day before chemo (and also hydrated a lot) and I haven't had mouth sores either. The steriods did make me gain a lot of water weight but it's more or less gone by now. I have been taking very small amounts of anti nausea meds, like half a tablet here and there but haven't felt I needed it otherwise. I'm having more night sweats and my mouth and throat does feel a bit fuzzy but really…. I am shocked how well I feel!!!
I will continue to update this thread as the days go on! Sorry if the writing is a bit messy but I just want to capture as much detail as I can since I know how helpful it is to read people's actual experiences!
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Oh I'm so glad you decided to go through with it, Pom. At any rate it reads like you're having a pretty typical reaction to T/C. I had one, too. And with that being said it'll probably not be until your third one that you notice recovery isn't coming all that quick. And by your fourth, you'll hopefully be done so you may feel like dog crap but now you can look forward to recovering. All in all, I felt like complete dog crap about four weeks. And even with that it wasn't that I couldn't do anything. I just was weak and had to go very slowly. Anyway, as my friends in the UK say onwards and upwards. You're doing the right thing.
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