Chemo or not for ILC woman age 69 onco score 27

Jluw

i'm 69 w/ILC stage 1 grade 2 tumor oncotype score 27: onc says i'm in gray area still although he'd recommend 4 rounds taxotere/cytoxan every 3 wks but would not insist. i suspect that's because i'm over the hill at this point. had a lumpectomy and was prepared for radiation and aromatase until the onco score came back at intermediate high. still at my age i am concerned about putting my body & mind through chemo. do have medically managed diabetes, am overweight, haven't exercised for a long time. just feel i can't stress myself out anymore than necessary with chemo at this late age. Onc said he'd recommend his wife doing it if she were in the same situation but if she said no no no he'd support her decision. Have an adult daughter and two tot twin granddaughters so have had that experience and it's been great. very lucky. would like feedback from older women with similar diagnosis.

MsPharoah

Hi Jluw. You can see my stats below. I was 63 when diagnosed and in average health...high blood pressure and cholesterol. I did 6 rounds of cytoxan/taxotere.

You are not over the hill and you should not skip chemo because you have experienced enough life! There is a lot of life to live. Did you oncologist tell you what the benefits would be for doing chemo, like how much you would be reducing your distant recurrence rate? Do you have someone to take care of you while you get treatment..Someone to cook, clean, run errands,etc. that is important. What does your pcp say about doing chemo and can your other health issues be managed during chemo? I would recommend that you get a second opinion from another oncologist. And then lastly, what does your daughter say? I know it's not her decision, but my adult children had opinions and I listened to them. They didn't think I was over the hill and they were happy I chose to do chemo.

I wish you well. When you make your decision, don't look back. It will be right for you.

Love, MsP

Jluw

Hi MsP

at my most recent appt tuesday my onc continued to recommend chemo because I'm on the high end of the intermediate oncotype score and because my KC7 levels were hi at 51%. He said I am healthy enough to take the chemo which along with radiation and an estrogen blocker for 5 yrs. would bring my recurrence stat from 18% to 7%...without chemo my recurrence stat is 10%. Also my daughter and husband feel bringing recurrence down to 7% makes doing chemo worth it...she said you just have to be a warrior. I do have 2 precious twin 18 mo old granddaughters which is pretty motivating. I also read that chemo makes rad & estrogen blocker more effective. How was your chemo experience? All my health issues are manageable according to my onc. I have a primary whom I'd only been to 2x, then the cancer was diagnosed. The primary hasn't once called me to see how things are going with me since the diagnosis and surgery - 4 mos. Although my primary's office set up my mammo appt so I am grateful for that.

Thanks for your fast reply, MsP, and hoping all is well with you!

MsPharoah

Hi Jluw,

It looks like your chemo benefit is like mine...not huge but definitely a benefit. I have not read that Chemo makes other treatment more effective. I don't think that is true. I had 6 cycles of cytoxan/taxotere and a neulasta shot the day after each infusion. I had my infusion on Tuesday, neulasta shot on Wednesday. Thursday through Sunday were the worst days...felt like I had the flu. Then I had 2 weeks to recover and I felt pretty good. The side effects are cumulative. By the time I got to the end, I was very fatigued. The most difficult for me were the taste changes. Food tasted awful. I lost about 15 lbs. I also had nauseau and diarrhea but only when I didn't take my medicine on time. I worked full time thru chemo. I took off on the treatment day and called off 2 other days when I was so tired I couldn't work. BUT...we have housekeeping service and my husband did everything. He ran all the errands, did meal planning and prep, did the laundry. I exercised every day which helped a lot. There are also side effects that I didn't have that you need to be aware, like neuropathy, which can be permanent. You definitely need to make sure your pcp and mo teach you how to manage your diabetes through treatment and that you see your pcp during treatment.

I just finished radiation this week and I did well. It has been one heck of a year.

I'm glad you asked your husband and daughter their opinion. They count too. Even though I decided to do chemo, it was comforting to know that my beloved family were on my team and they were wonderful. I still say that my husband was the hero during my treatment. You definitely need physical and emotional support and if you have that, you can do it.

I wish you the best in your decision.

MsP

Jluw

Thanks, MsPharoah, for reply!

Am not sure what a pcp is - primary? My diabetes 2 is controlled with Metformin & I can continue to take it if I do chemo.

Have just read a thread on this website that really questions efficacy of chemo in relation to its horrible & dangerous side effects for even getting recurrence down 3-4% more from 10% recurrence without it. Am starting to sit on the fence again & wonder if it's worth it. Am going back to feeling crazy again over the decision to chemo or not.

MsPharoah

Hi hon, why don't you get a second opinion..then decide.

MsP

bluepearl

Give it a try and see how you do. Some people do amazingly well, regardless of age. How large was your tumor?

Jluw

Hi bluepearl - my tumor was 9mm...maybe I should just jump in instead of over thinking. Too bad u can't just try it once & not lose hair. Some of my hesitation is vanity - don't want chemo curl when hair comes back in & don't want to see my nails lifting out of their nail beds - chemo nurse said it was smelly. But mostly hate losing my health to chemo/rad/aromatase even tho I know the alternative is worse. My bc doesn't hurt now so I feel good - that's the problem.

(My brother lives on salt spring island bc & my husband & I lived in vancouver the 1st year of our marriage)

Cowgirl13

Jluw, I was diagnosed when I was 63. I had a lumpectomy, chemo, rads and am on arimidex. I was terrified of chemo. What I can tell you is that chemo was very do-able. It did take me a while to recover from all that but I also had a year of Herceptin which affected me. I am now almost 4-l/2 years out and I feel great. You have so much to live for, why not go for it!

Liz

bluepearl

After having a scare "there's a spot on your liver" (it was benign, whew!) I can tell you I'd rather deal with the chemo. 9mm is pretty small but of the three grading scores, and Ki67 of 51%, I am thinking your mitotic score was higher than 1. I know your dilemma and was convinced I'd do the chemo until they told me it would be too much...(mine were 1cm grade 1 (Ki67 less than 10%) and other was grade 3, 8mm). If your nodes were clean, your had ERPR+ Her2- cancer you may get away with the hormone treatments alone but be very committed to them. Myself......I think I'd give it a go and see what happens....you can always stop. They had a hard time figuring my mitotic score from a 1 or 2 and settled on 2, so check that out as well. It's a bitch, isn't it. (I'm 63) Powell River B.C.

bluepearl

You can put a bag of frozen peas on your nails to keep them from falling out.....gel on eyebrows and lashes ditto. Women go to work while on chemo etc. SE can be managed quite well. (listen to me who didn't take it, eh)!

Denise-G

I write a breast cancer blog and hear from women around the world. Many are your age that go through chemo quite successfully. Especially if you do not have to do Adriamycin. Heart issues are a biggy with that one (I had a heart attack SE of Adriamycin). I met 3 women while I was going through chemo - age 72, age 85, and age 81. They were my inspiration!

Women write and ask my advice. I had no choice since I was Stage 3. But I have met numerous Stage 1 women who chose not to have chemo and later wish they had. They worry that they will have a recurrence

and then be 5, 6 or 7 years older.

Make your decision - but watch your regrets. Sending a hug your way!

Racy

Hi, if you are concerned about hair loss, search for the topic 'cold caps' and seek advice about an option to keep your hair.  

I lost my hair with chemo and that was the worst part of this ordeal. If I could rewind, I would consider the cold caps more seriously.

Good luck with your decision.

Racy

Amd do get a second opinion!

dlb823

Jluw ~ You've already gotten some great advice. I would add... If at all possible, get that second opinion at an NCI-designated cancer center. They're listed here: http://www.cancer.gov/researchandfunding/extramural/cancercenters/find-a-cancer-center They will have oncologists that specialize in bc and will be able to help you weigh your individual concerns into your decision-making process.

As far as the nail issue, if you ice your nails during your chemo infusions (to prevent the chemo from circulating in the nailbeds), they should be fine. It's the same principle as cold caps. The fact that a chemo nurse told you about the odor rather than a way to prevent the problem is disappointing.

Did you have an MRI prior to your lumpectomy? Just curious because ILC tends to be multi focal or multi centric (more than one lesion), and if you decide to opt for no chemo with a lumpectomy, I would want to be certain beyond any doubt that your lumpectomy got it all. My bio page explains why I feel so strongly about these things. (((Hugs))) Deanna

gds

I am 63 recently diagnosed, had a lumpectomy on Sept 29, 2020 - biomarkers show ER/PR+ and HER2 -

Stage based on size is stage 2 but grade 1 - less than 10% of tumor was abnormal structure (ie: tubular)

No abnormal cells in safe margins or lymph nodes of lumpectomy (3 lymph nodes were removed - 2 sentinel and 1 axillary)

All CT scan of chest, abdomen, pelvis, breast mri and radioactive tracer full body bone scan which was done post surgery showed no mestatic anywhere else in the body.

Would chemo be recommended for me - asking since I have a medical oncologist appt on Monday Oct 19,2020 and I want to be prepared.

Thanks.

Beesie

gds, this discussion thread is from 7 years ago. It would be better if you started your own thread so that the focus is entirely on your situation.

I'll just give a quick answer here and say more in your own thread when you start it. Based on your diagnosis, your cancer sample should be sent in for an Oncotype test, which analyzes the genetic make-up of cancer, and determines the aggressiveness and whether or not chemo will be beneficial.