Chemo or no Chemo

Pokemom1959

Hi All - I was diagnosed with my second breast cancer - both on the left side. 3 small tumors (1.6 cm and 2 at .8 mm all in the same area). About a month ago I had a lumpectomy with bilateral reduction and lift where they removed 2 lbs of tissue from each breast. Got >2cm margins all the way around. Because the tumors were high grade, my oncologist sent them out for oncotype testing. Radiation and AI inhibitors are a given, but chemo was a question.

Just got back from the oncologist. My oncotype score came back at 25 with the possibility of a distant recurrence at 12% over 9 years without chemo (I'm 62 years old). Benefit of chemo is less than 1%. But then they do the RS analysis (I think that is what she called it - more personalized to my circumstances) and it came back with a possibility of distant recurrence at 16% without chemo and 7% with chemo - so a 9% difference.

The chemo would be Taxotere and Cytoxon 4 treatments - once every 3 weeks for 3 months. She said this is a very well-tolerated chemo, does not damage other organs and has very few side effects are anticipated. there would be hair loss, but I would do the cold caps.

Ugh ... so now it's my decision. Any thoughts from those who have been through something similar?

Redcanoe

That is a very personal decision but if you are asking what I would do, I think I'd do the chemo. My reasoning is this:

This is a reoccurence of the same grade and biomarkers of your previous cancer and it popped up in three spots. Its impossible to know if you have any dormant cells distant in your body.

It's grade 3. Grade 3 cancers tend to respond well to chemotherapy.

You are 62 now and eligible for chemo. It may no longer be an option in the future should you have a distant reoccurence.

Lastly, I've been surprised how not as bad chemotherapy has been compared to how I expected it to be. I thought it was going to be absolute hell and it has not been.

Pokemom1959

Another question - what does "absolute chemotherapy benefit mean?

If my individualized distant recurrence risk at 10 years is 16% and my "individualized absolute chemotherapy benefit" is 7%, does that mean:

With chemo my risk is lowered TO 7%

OR

With chemo my risk is lowered BY 7% to 9%?

This is all so confusing ... and scary.

Beesie

It means your risk is lowered by 7% to 9%.

Pokemom1959

Thank you both for your input. This is really a tough decision.

moth

I'm heavily biased to aggressive treatment so take it with a grain of salt but imo anytime chemo is on the table, I'll say take it.

You could easily have a great 25+ yrs ahead of you and if you're in otherwise good health, I'd want to throw everything at it.

Just on a point of info tho, cold capping doesn't always prevent hair loss and taxotere can in very rare cases cause permanent hair loss. But even then, for me bald is well worth it if I get to live a bit longer

Best wishes

Cowgirl13

I was 63 when I was diagnosed and went through chemo and rads and an AI. I was terrified of chemo and actually it was very doable. One of my chemo's was taxotere. I'm 75 now and glad I threw everything at it and one of my big reasons was that if I were to have a recurrence and I hadn't thrown everything at it I would feel awful. Now, if it comes back, I did it all and could accept it.

ruthbru

62 is young in my book! Grade 3 is aggressive, chemo works best of fast growing cells; I'd do the chemo (actually that is why I did chemo myself). I think, for most people, the idea is worse than the actual chemo experience. I felt 'off' during it but did not alter my regular routine very much at all. Best of Luck!

LeesaD

Another ‘I’d do the chemo’ vote here. I’ve always chosen the aggressive route when it came to my treatments. I never wanted to say I should’ve done that. I had four rounds of TC also and definitely doable. I did lose all of my hair and it did grow back. Best of luck with your decision! Not easy.

Mary9BethTuckahoe2433

Thanks for this very useful information - I'm recenty diagnosed and really want to know about things like this.

Mary

DutchieGirl

Personally, I would ask the docs to throw everything they have at it. I did taxol and found it to be quite manageable with pain meds. I would hate to find myself in a situation where I regret that I hadn’t done chemo. Very best of luck to you!

Pokemom1959

LeesaD - What kind of side effects, if any, did you have with that combo?

Thank you all for your input and kind words. I am leaning toward doing the chemo ... but it is scary.

moth

Pokemom, what is scaring you about chemo? Perhaps we can ease your fears if we know specifically what is worrying you about it

Pokemom1959

Honestly, and I know this sounds petty and vain, but it's the hair loss and the possibility of neuropathy. I've read so much about the possibility of permanent hair loss with Taxotere and even Taxol and even though I know the chances are small, I just cannot imagine living the rest of my life and trying to do my job with no hair. I'm going to ask my oncologist about changing from Taxotere to another drug. I'm also going to do the cold caps and hand and feet icing if I decide to do it. I've heard that most people tolerate it well these days so I'm not too worried about the other side effects ... the hair loss is the big one.

And I wonder if it's worth it for a 0-7% benefit. It just seems like everything is right on the cusp ... if it was a 3% benefit, I wouldn't do it. If it were a 15% benefit, I would absolutely do it ... but 7%?

moth

So I think one thing we've not normalized enough is being hairless. I have no hair. Odds are I never will again. Showers are so fast lol! And no hair to dry and style! I have wigs but rarely wear them. Many people here though purchased a wig very similar to their current hairstyle and nobody even knew they had hair loss. So that's an option too... esp since cold capping isn't always effective. And some people end up really getting into wigs and they can be a lot of fun. There are some good YouTube channels on wig reviews and wig wearing - wigs now are stylish and very real looking.

The neuropathy - I experienced some during taxol in 2018 but it was pretty much gone within a couple months. & Even now, after being on a taxane for over a year, my neuropathy is minor. Certainly others have not been as fortunate and yes absolutely, it is a risk.

A reduction of 7 points seems significant to me but obviously it's a judgment call. Hope you come to a decision you feel good about!

Beesie

Pokemom, I know you know this, but keep in mind that the 7% risk reduction is specific to a metastatic recurrence, which is very different than a local recurrence. Once you have mets, you likely would be on treatment for the rest of your life. And while the goal of chemo now would curative, once diagnosed with mets, the goal of treatment is to extend life, because with mets the possibility of being cured is off the table.

Melbo

my neighbor had breast cancer years ago and wore a wig while she was doing chemo. Her hair came back just fine after she was done, but she said she liked how the wig looked so much better than her regular hair that she started wearing it all the time. I have talked to her numerous times over the years and didn’t realize she wore a wig until she told me.

Personally I just rocked the bald head, but I knew if it bothered me I could get a wig and most people wouldn’t even know. I did not ice my hands or feet and only had very mild neuropathy that was better a couple of months after I was done with chemo. Your experience could be different of course, but just another data point that the chemo will likely not be as bad as you imagine it will be.

Pokemom1959

Excellent words of wisdom from all - thank you for your input.

Is there a drug that can be substituted for taxotere that does not have the risk of permanent hair loss?

WC3

Pokemom:

I believe taxol carries a lesser risk of permanent hair loss. Taxotere was actually created as a synthetic alternative to taxol.

Redcanoe

I'm on taxotere and my hair has been growing back between cycles. I have a little brush now although my last round was 4 days ago so I expect more loss. Permanent hair loss is pretty rare.

hnsquared

hello Pokemom...I’m not going to say anything that hasn’t been said but I wanted to join in. I’m not going to lie...I’m vain, I liked my hair and I was devastated when I heard I needed chemo. Holy crap I didn’t want to lose my hair...I’m cute with hair but not cute enough to pull off bald 🤣. Insurance didn’t cover cold capping and I had no idea how expensive cancer would be or if I could work so I didn’t feel I could afford to pay out of pocket for cold capping (most women I know who cold capped still lost hair many about 50%). All that being said I lost my hair and once it happened it wasn’t the end of the world after all. I got a wig that looked like my hair and no one knew.

I was scared of chemo...thought I’d be sick, throwing up, in pain. I’ve watched too many movies from the 1980’s. I did 4 AC and 12 weekly taxol. It was very manageable. I worked full time and only missed on infusion days. I walked and worked out until the last few weeks when the cumulative fatigue caught up with me. I never got sick and I took the meds for nausea and was never nauseous. It wasn’t fun but it was not at all what I expected. I bought booties with ice packs off Amazon and iced my feet and held ice packs. By the end I had a tiny bit of tingling but not bad and none now.

My plastic told me..breast cancer in the breast is not going to kill you it’s that tiny little cell that slips into the bloodstream so go as aggressive as you can. You get one opportunity to cure. I have been very aggressive and I’m happy with that decision. If it comes back I won’t be happy but I know I’ve done all that I can.

Sending all positive vibes your way

Pokemom1959

Thank you again for all the words of wisdom. I truly appreciate your input as I struggle with this decision.

For those of you in the know, if I elected to use Taxol instead of Taxotere, would that change my chances of a distant recurrance?

ruthbru

I was a middle school teacher & kept teaching throughout chemo. I wore a very nice, natural looking wig throughout & my 'hair' never looked so good. My hair dresser told me to use Nioxin shampoo, conditioner & scalp treatment for chemically treated hair (because my hair was being chemically treated from the inside out) and to use it even when I was bald switching to their regular shampoo several weeks after the last chemo. I used Nioxin until my hair was fully back to it's normal thickness & then went back to my regular shampoo. My hair came back very nicely and was no worse for wear. Nobody can guarantee anything, you have to go with the odds. The odds are very, very much in your favor that your hair will come back. Don't literally bet your life on the chance that it won't. I think of people with alopecia who have to learn live without their natural hair. I think of actors & actresses who spend hours each day in wigs as part of their job (or Dolly Parton who has always, always wears a wig). So, if you choose, you can get a good wig & look perfectly normal during chemo, and beyond on the slim chance that would be necessary.

Redcanoe

my understanding is that taxotere is the stronger drug but it sounds like you will be taking it in combination with cytoxon. Combinations of chemo are often recommended because they work in different ways. Definitely a good question to ask your oncologist but if this is an option, it's better than no chemo in terms of reducing risk of no reoccurance.

Pokemom1959

I think that after the advice from all you wonderful ladies and after meeting with my oncologist today for a chemo teaching session, I have decided to have the chemo.

We are going to do the Taxol instead of the Taxotene. She said the effectiveness of the treatment is the same. The only difference is the Taxol is infused more slowly so it takes 3 hours instead of 1.

I'm going to cold cap - at the infusion center they said they have had excellent results. When I was taking my tour today, there was a gal there who was cold capping so I got to speak with her. She said she kept all her hair. As we were talking, an alarm went off and she told me that was the end of her chemo treatments. I was so excited for her I started crying when I got to my car.

I've decided not to get a port. Since I'm only having 4 treatments, my oncologist said that she is fine with seeing how I do with the needle in the arm for the first treament and go from there.

Still scary, but I'm feeling more confident in my decision. Thank you all for you input. You have no idea how much I appreciate it. Hope you are all doing well and staying strong.

Debbie

ruthbru

Wishing you the very best, Debbie.