Chemo Decision for Premenopausal Node Pos + HR +

sandradublin

All,

I have been scouring all similar posts as well but would really welcome any thoughts and your experiences to help with decisions on chemo.

I have Stage 2B IDC with 1 positive lymph node (but is 11mm with ENE) and completed UMX and ALND. I met with MO this week and he is recommending chemo of dose dense AC-Taxol as the gold standard, due to the positive node and my age (43). An alternative treatment presented was CMF. He stated EVEN with a low or intermediate Oncotype score (<25) there would still be some chemo benefit for me but would be likely small in region of 3-4%. While I knew hormone therapy is my bigger benefit I was expecting this to be higher from looking at Predict so this did throw me! I understand this is coming from the recent RxPonder results for premenopausal women, my cancer is ER + 90%, PR + 80%, HER -.

My thoughts are to be aggressive with my treatment and take the chemo especially with size of LN tumour and the ENE. Much as I am utterly terrified of chemo, I am lucky I have the time to take (I am eligible for reduced pay sick leave), I have kids but good support system with family and husband, I am naturally fairly risk averse, I am fit and healthy apart from this BC crap! I want to take all my %'s against reoccurrence but within reason. I want to weigh up the risks and benefits as AC-T is v toxic and comes with its own long term side effects and risks such as cardiac issues and secondary cancer. Also from my reading it seems strongly suspected the benefits of chemo may be related to the medical menopause of chemo as opposed to chemo itself but I don't believe this has been proven (yet). So potentially any chemo which induces this will have the same benefit! Please correct me if I have misunderstood any of this.

So I asked for the Oncotype dx test to get all facts and meet again next week however this won't ultimately change the MO's chemo recommendation even if I am low. However I want to understand my individual risk and even if I go for chemo, it may give me more treatment options and/or flexibility if I experience difficult side effects for example.

For my MO I want to ask :

Is ovarian suppression an option instead of chemo and his thoughts on this? I suspect he will state the facts aren't here for this yet for him to recommend. Are there people on here who are getting this as a treatment option instead of chemo who are in a similar position?

Could there be another alternative to AC-Taxol treatment? I see many use TC here which is also an aggressive option but may have less risk for cardio toxicity as well as less neuropathy and cancer risk. It is a shorter treatment too. However it looks like has more risk of permanent hair loss and i don't have cold cap options here in Ireland, would like to know the likely %s of this. Any thoughts on TC instead of AC-T as a treatment option?

Is CMF deemed less effective to AC-T (and TC)? I believe so but again long term Side effects are also further reduced.

Will chemo help reduce my chances with local reoccurrence too? I had high grade DCIS too and had close margins against chest wall. I will be getting Radiotherapy and meeting RO this week on this treatment plan.

Sorry for very long post / thought dump but is a tough decision as feel is a real grey area at the moment and hopefully more research will help determine if/why a chemo benefit or not over the next few years I need to make a call when I meet for results next week as am nearly 6 weeks post op. Hoping to talk to another MO in the US (my cousins friend) to get another view point beforehand.

All your knowledge/ thoughts / experiences or other considerations much welcomed!

Sandra

barbojoy

Hi SandraDublin!

I don't have an informed opinion or the specific experience that you are seeking (hormone therapy in lieu of chemo) but I completely understand why you are pausing and asking these questions. I wish I had known more, researched more before I said "yes" to all of my treatments. I think I was just trying to block it all out and follow directions vs. truly facing it and owning the treatment plan myself.

I have IDC/DCIS stage 2 with 1 node (they only took one and it was positive) but I am also HER2+ and Had Paget's disease. So...a different diagnosis. I did Taxotere, Carboplatin, Herceptin and Perjeta. I did cold-capping because of the Taxotere but it did not save my hair. I started chemo 09/10/2021 and it completed 01/13/2022. I am still bald with very little regrowth. I have engaged with other women who had Taxotere and no cold capping. All lost their hair, but all have regrowth. I asked the nurses at my clinic about any patients with permanent baldness after Taxotere and none were aware of a single patient who had experienced that. I think it is a known and real side effect for sure, but I have yet to meet anyone who experienced it. Who knows.. maybe I'll be the one with permanent loss--even with cold capping...

I was hospitalized twice for Neutropenia and Typhlitis during chemo. It was VERY difficult for me. They had to reduce my Taxotere by 1/2 for the last 3 infusions and put me on preventative antibiotics to keep me out of the hospital, but I did complete all 6 treatments and I am now doing radiation. I don't have an onco score and I did a double mastectomy without reconstruction. Surgery 1st, then chemo, now radiation, then forever Letrozole due to HER2+ cancer. They are monitoring my heart closely and so far, no chemo-related side effects. I am still SOOOO FOGGY, though. And, I have no eyelashes or nose hair, or body hair (for that matter). I didn't realize that the lack of nose and eyelash hair would result in a consistent runny nose and leaky eyes. My fingernails are also garbage because of chemo. I believe that all of the cosmetic side-effects will self correct. I worry that the typhlitis that I experienced will have lasting effects to my lower GI tract. I have lingering symptoms now- but hope they will correct over time.

I am not sure that any of this helps you, but these are the types of things that I wanted to hear about before I started chemo, so I thought I'd share them with you. I won't know for some time if following the doctor's treatment plan (vs. parts of it or a modified version of it) will save my life or not -- but I believe that I am seeing the best team in my area and I had to just trust the process at the time.

I know you'll make the right decision for you. Best of luck!

odyssey305

SandraDublin, sorry you're in this situation of feeling unsure about treatment. I can relate, and it sucks. From what I gather, all doctors seem to approach these grey areas differently. In my case my MO told me that other doctors could easily make a valid case for chemo, but ultimately she felt like the risks outweighed the benefits. I'm 49 and premenopausal, my other details are in my signature. My Oncotype score came back as intermediate (17) with a 9-year recurrence risk of 15%, but showed no benefit to chemo. We talked about RXponder, but my MO thinks the likely benefit of chemo in the trial group is the ovarian suppression, but as you mentioned, that has yet to be proven. She recommended a plan of Lupron + Femara + radiation, but also recommended that I get my ovaries removed, which I plan on doing before my next Lupron injection.

I should mention that it would have been chemo regardless if my tumor was high grade, but since it was grade 1 she felt comfortable being more conservative . I was still on the fence about forgoing chemo, so my case was reviewed by the university Tumor board and there was consensus with the current plan. I feel more confident now, but I'll probably always wonder if I missed my chance to take a more aggressive approach.

It's good that you asked for an Oncotype report, I think having all the information you can gather will help you and your doctor make the best decision. You may also consider a second opinion or case review if your clinic has a tumor board. If you do decide on chemo, know that you'll have tons of support on these boards from women who have been there done that, and women who are in the same stage of treatment as you. Keep us posted and hang in there.

Barbojoy, sounds like you've been through hell and back, but you made it to the other side - Congratulations on finishing chemo! Wishing you a full recovery from the side effects and luscious locks soon!

leesad

I was 49 at dx and pre menopausal. Originally was set up for AC+T. My Oncotype score came back a very low 3. My MO when seeing this pivoted and changed my chemo to TC as he didn't feel the heart risk from the AC-T was worth it. TC was doable. I can't comment on CMF as not familiar.

Many have ovarian suppression or oopherectomy (removal) in addition to chemo or on their own or when chemo not recommended but not sure if it would replace chemo if it is recommended. Chemo is systemic and treats whole body to prevent distant spread. Ovarian suppression would just reduce estrogen which helps in ER+ but wouldn't get any stray cells that could've escaped. My MO wanted me to go direct to AI's as opposed to tamoxifen (as I was pre menopausal still) to get some extra percentage points so I had suppression for a few months so I could start anastrozole until I could schedule the ovary removal. With the Oncotype score of 3 we knew AI's were what would be most effective but I was destined for chemo when we found four involved nodes so my cancer was moving. My MO said sometimes he thought he wasn’t even sure if the chemo would be effective with such a low score and I always wanted to be as aggressive as possible with treatments. We made the best decisions for me that we could. Wait for the Oncotype and you’ll have a better picture to make these hard decisions. Best of Luck to you.

elainetherese

Hi!

I was 46 when diagnosed. Because I was triple positive, I was on the chemo train from the get-go. I did do AC+T, and worked through it. Of course, I didn't have severe side effects, which are possible. I was also lucky because I could work from home part of the time.

I've also been doing ovulation suppression + AI for over seven years. I'm hoping that the results of my Breast Cancer Index test will allow me to stop.

While both chemo and OS + AI are systemic treatments, they aren't necessarily interchangeable. Because I was HER2+, I had to do chemo because Herceptin is initially given with a taxane (which for me was Taxol). Also, my cancer was Grade 3 and was replicating quickly. Because chemo works best on Grade 3 cancer, my oncologist believed that it could shrink my tumor and clean out my bloodstream and lymph system of any stray cells. She was right; all of my cancer was gone in my breast and compromised lymph node at the time of surgery. I had what is called a pathological complete response (PCR), which suggests that chemo was very successful in destroying my kind of cancer.

Breast cancer is not necessary a stationery beast, however. My cancer was not only highly HER2+ but it was also highly ER+ (95%). To prevent a recurrence of ER+ cancer, I'm doing hormonal therapy (OS + AI). I look at it like a preventive measure. HER2+ cancer usually recurs within the first 2 -- 5 years after diagnosis, but ER+ cancer can recur years and years later. I would rather not get any breast cancer again.

Good luck, making your decision!

sandradublin

All - Thanks so much for replying!

Barbojoy,

I hear you on taking ownership of the treatment, I was in such a daze after my diagnosis too that I didn't really take in or question anything on my surgery treatment and I am left now wondering if I really needed the full ALND. Certainly now looking back I wish I had at least further discussion on it with the BS on pros/cons. As I type here, my arm is still aching nearly 6 weeks after surgery so wondering if lymphoedema is in my future...

It still is early days for the hair growth so take heart. I did read Herceptin also slows hair re-growth so hopefully just taking it's time to recover and you will be rocking a pixie cut very soon.

Wow well done on getting through and finishing your chemo, it sounded like you had a really tough run, but at least is behind you now and you can start to recover your strength and wishing you no lasting side effects. Be kind to yourself! Yes while I hope I will tolerate the chemo well (like ElaineThere) it is good to understand it can be serious and want to ensure I am happy with my decision.

Odyssey305,

Agree it definitely isn't the approach of one size fits all. It sounds like you and your team really thought through and discussed the best approach for you based on recent evidence which is great, ultimately that is all we can do to consider the facts and what is best for our cancer and us as a person and hope it is enough. I think bringing to the tumour board was a good idea and will ask my MO about this, I believe there is a similar MDT (multi-disciplinary team) meeting.

LeesaD,

That's really interesting on the TC vs ACT-T! I'd love if my oncotype came back as low as yours!! Either way I don't regret asking and waiting for it to get a full picture as I can see from your experiences it allowed you to tailor your treatment plan. I believe i will do chemo also either way at the moment too. Good to hear TC is doable.

ElaineThere,

That's great to hear a more positive view on AC-T, think I've just been seeing all the horror stories. Well done for working through, I'm sure not easy but fantastic the result was PCR for you. It is an interesting point on ovarian suppression as well as chemo, I have been focused so far on surgery and chemo so need to read up further on this as this wasn't mentioned to me, just Tamoxifen, but sounds like this may this give me extra %'s! I'll ask my MO further on this as an additional treatment option and the benefits for me. I can see many of you have also gone down this route.

I'll let you all know how it goes during the week, and thanks again for your feedback, it really helps!

sandradublin

Hi all,

So my test results were delayed and meeting with oncologist was pushed out until Monday…

However my daughter has just tested positive for Covid. Bloody typical as we all had escaped it for 2 years and it had to happen now (sob). She’s only 6 so really hard to isolate her and while the 2 boys, myself and husband are negative I am expecting someone else will come down with it!! Don’t know what to do, isolate myself and/or or try limit contact with her. We’ve a small house! Am I just delaying the inevitable and better to just get it now?!!

panicking now as MO said chemo ideally needs to start between 4-8 weeks and didn’t help that he didn’t meet me until late after surgery and didn’t order the oncotype test so we were waiting for that. I’m over 6 weeks now.

Already was totally stressing out about the right chemo decisions and anxiety through the roof now

salamandra

Ugh, sorry, this is a lot.

Just wanted to say that I know multiple people recently who had a false positive result from an antigen test. This is a known thing, and false positive is much more likely when the community transmission rate is low (as opposed to how high it was at the height of omicron). If your daughter's positive test was a rapid antigen, it probably makes sense to follow up with a PCR and/or more antigen tests to confirm.

Even if it really is covid, I would bring it to your MO and ask how to proceed. Hopefully they can get you started on treatment as soon as safely possible.

Also remember that everything in medicine is based on statistics and averages, including the 6-8 weeks ideal. It doesn't necessarily mean that chemo couldn't be just as effective for you personally individually with your personal individual cancer even with more delay.

sandradublin

Thanks Salamandra for the reply, I was freaking out a bit there!

We can’t do a PCR in Ireland for under 55s anymore just antigens but yes was conscious of the false positives so did a couple using different brands and were all positive so fairly confident it is it, but she has no symptoms thankfully. We lifted all restrictions here last week and is now rampant as a result but not a major issue anymore for most people as all vaccinated. Glad the peak is over where you are and hopefully will calm back down again here too.

As it happens my appointment was pushed out again) as the oncotype was delayed l so still trying to the dodge Covid bullet in the meantime. Hoping my decision will become clearer when I have the facts and can talk through my questions with the MO.

sandradublin

Just to update my oncotyoe came in and is 16. The MO says chemo will now give approx 7-8% benefit based on my age which I’m more comfortable with although we did discuss the ovarian suppression may be part of this and we’ll discuss this as a treatment further down the line. I’ve ruled out CMF so leaves AC-T and TC.

My MO still recommends AC-T due to my age and LN etc as the most effective regimen with 1-2 % benefit lost with TC regime approximately. However seems like a personal preference also. He says he doesn’t tend to use TC due to the increased short term side effects of nausea, stomach problems, mouth ulcers while I thought was other way around. The team/nurses then won’t have the same experience with TC then also. He also said he would probably recommend TCx6 while most people I see here have this x4 so I assume this would be much more toxic and less do-able. Interestingly he stated there would be no more long term risk of permanent hair loss with TC than any other chemo. The reduced risk of TC for cardiotoxicity and secondary cancer is a plusfor me so just need to weigh up the pros and cons again between the two.

Going to sleep on it and make a decision tomorrow, it’s so so tough making these calls. And covid not helping stress levels at the moment!

Any further thoughts on the above appreciated!!

KJP

sandradublin

I was just reading through this forum and wanted to join in as have very similar DX / position and faced exact same concerns as you. In short had right MX Jan 19 2022. ER/PR+ HER2-. 1 sentinel node removed with micromets (1mm). 43 yo also. I am in Canada. I was offered oncotype but I knew I wanted chemo based on the % benefits for age and premenopausal, and my general approach to throw everything at this now (health otherwise very very good - no family heart issues, no personal health issues at all). My doc actually recommended TC to me citing that the 1 ish % benefit in their view not worth the heart risk. I sought second opinion from US doc. He was very solidly in support of going hard given my good health and age and recommended dose dense AC-T. As many say, its a personal choice but I want to do EVERYTHING I can now to minimize recurrence and Im looking at 30-40 year survival, not just the 10 years they point you too when they talk %. I've looked at all the online calculators and while of course they don't go out as far as I want them too, over time the % begin to diverge between AC-T and TC. Of course I do understand the risks I am taking to heart and small chance of other cancers etc.

I'm in for my third AC tomorrow. Had many of the usual SE, but I've found it manageable so far. They've managed nausea with the med regime (had some first round, got additional meds and none second). Lost hair. Swinging between constipation and diarrhea. Some fatigue days but never close to "in bed all day" type. Mouth sores but got the magic mouthwash and cleared up fast. Worked through it all (flexible and mostly at home). Walk 1 hour plus pretty much every day. Get in yoga often. Even a few runs. Also have young children and fears of COVID, such a hard balance.

Just thought I would share my story in case helps at all with your decision (though you may have made it already!)