No chemo? No rads? After bilateral mastectomy

Jaybird627

Hi. I'm 57 (almost 58) My Background:

1st BC age 44, lumpectomy, stage 2b, chemo and rads. BCRA2+.

Oophorectomy almost 4 years ago.

2nd BC, bilateral mastectomy, (recovering now, in week #2), stage 3a.

Onco wants me to do 6 Taxane type chemo (?), or A/C then Taxane chemo.

First BC I did NOT want to do chemo/rads but was scared into it.

Now, May 2018, I once again am being scared into chemo/rads.

I suffered extreme neuropathy with the Taxol and still have some lingering effects of it.

Has anyone here done surgery but no other treatments other than naturals ones such as

oils, herbs, etc?

PM me if you don't want to post publicly.

Thanks!

Janis

Lula73

hi Janis- I just wanted to say, don’t let anyone force you into doing anything. You and only you should make this decision based on all the data available so you can make an informed decision. If you feel it’s your medical team scaring you into doing additional treatments, be sure it’s not a perception issue. Are they simply laying out the consequences of not doing chemo and rads? The consequences are scary. Treatment is scary too. Also keep in mind that many docs aren’t used to having anyone push back/ask questions/be informed. They are used to people saying,’ok doc, whatever you say to do I’ll do, doc.’ The result is the tone/wording that your doc uses to respond to you may not be as tactful as it could have been. They are human too and you may have thrown them a curveball they were not expecting/hadn’t dealt with before.

Perhaps having a consult with your medical team and telling them upfront that the meeting is to ensure that you’re making an informed decision would help. When that consult happens, have a list of questions for them regarding treatment vs no treatment, let them make their case for treatment and then you lay out your concerns and thoughts on why you’re thinking no additional treatment and let them respond perhaps with additional options - cancer care has come a long way in the 13 years since your were first diagnosed. Good luck!🍀

bella2013

Jaybird627, did you receive an Oncotype Score? Since you tested positive for BRACA2...I don’t think anyone is trying to scare you into any path of treatment. If they are, find a new team of doctors. Medical Oncologists and Radiology Oncologists deal with breast cancer everyday. If they are encouraging you to take the path of chemo and rads, please consider it. Your BRCA2+ result puts you at a higher risk of recurrence. It is a decision only you can make. You are still young..

Jaybird627

Hi,

Okay, no one is "scaring" me into treatment, but it seems one doesn't get a "say" in it. I'm not sure I want to give blind faith to the system of chemo and radiation.

I don't believe that chemo and/or rads would eliminate the possibility of mets.

I'll speak with my oncologist.

I'd still like to hear from those who use 'alternatives' to chemo.

Janis

dtad

Jaybird...so sorry you are facing this again. Do NOT be afraid to post anything! This is an alternative thread and thus the appropriate place to discuss non conventional options without judgment. I am not in your situation, but I did refuse anti hormone treatment form the start. I'm 3 years NED. So far so good. Good luck and keep us posted.

Jaybird627

Hi dtad and thanks.

Researching the use of essential oils, specifically oregano, frankincense and myrrh.

I just can't willingly put my body thru the toxicity of a taxane chemo knowing what it will do to me.

Janis

Meow13

I took AI drugs after mastectomy not sure I would do it again given what I know now. I am really happy I refused chemo.

Jaybird627

Hi Meow13,

Can I ask you your DX?

I do know that chemo doesn't guarantee that you won't get BC again, and I don't think the % you are likely to get it again is much different from that % if you don't do chemo.

And chemo doesn't guarantee you won't get mets.

I'm going to see what kind of statistics my onco comes up with.

I know I won't complete chemo anyway if I do start it as I can't tolerate the taxane drugs.

I have at least 10 more years of work ahead of me and I can't not work as I am a single parent.

Going to research CBD oil.

Janis

Meow13

I was stage 1, grade 2, er+95%, pr-, her2 negative, no nodes I had 2 small tumors close to surface ilc and idc. One was nottingham score 5, grade1 the other nottingham score 6, grade 2. I received a single oncodx score of 34. So chemo was recommended. I am very happy I didn't do the chemo. I believe the AI drugs may have benefitted me. I was not told of any permanent side effects due to them. Well that wasn't true for me. Would I take the drugs again I am not sure I would. I am older have have 2 grown children no grandchildren. I am retired.

Meow13

The skin was tested in pathology and there was no evidence of disease tissue normal.

Artista964

i think you should post this in the stage 3 forum to get stage 3 input.

Jaybird627

Well, Meow13, it sounds like you are doing fine with you decision(s).

Me, I'm still not wanting chemo. I scared my onco nurse coordinator with a phone call stating as much this past weekend and she has now upped my appointment with my onco to this Friday. I get my 3 drains out then, too. I asked for percentages. She thinks because I am BRCA2+ I should do chemo no matter the health consequences. Anyone here hear that chemo can cause cancer to spread?

So, any further testing, with heart doctor, is on hold for now.

Anyway, I did what I thought was a lot of research on CBD oil and I ordered some. It can't hurt (can it???) and it could help - if I do chemo or not. Will report back on that in the future.

I also contacted CTCA for info, perhaps a consultation.

Janis

Meow13

I dont think having brca2 gene should have anything to do with receiving chemo. I can understand doing a bmx but not throw chemo blindly at it. Chemo generally works well on fast growing tumors.

You can kill a bunch of fast growing cells with chemo, you might aggrevate the drug resistant cells and lower your immunity and the whole thing can backfire. On the other hand, by killing fast growing cancer cells you may knock it out or stave it off a while.

Lula73

I agree...I don't think chemo solely due to BRCA2 is standard of care. The nurse may have just been misinformed and truly thought she was helping. There is a thread on the subject of chemo spreading cancer on BCO somewhere. It was within the last year or so. If memory serves (and it's not the most reliable these days on the AI), that article was published in a non-peer reviewed journal that has a low “credibility" rating. If I'm remembering incorrectly someone please set it straight🙂🙃🙂

Jaybird627

Hey ~

I've been researching clinical trials. Most are either pre-surgery or metastatic required. There are a bunch with BRCA+ requirements so I'm looking into those. Some of the trials require you to be done with chemo. I simply cannot sit by and an let TX be dictated to me without my doing some research first. Can't wait to speak with my onco.

I went to: Breastcancertrials.org.

Janis

Icietla

Jaybird, have you seen Husband11's thread relating to oil of oregano?

https://community.breastcancer.org/forum/79/topics/854003?page=1

Jaybird627

Hi Icietla,

I do take oil of oregano. Just started actually. Also, other oils topically - frankincense, myrrh.

I take a bunch of supplements and have increased my turmeric.

Janis

Jaybird627

Friday update:

I still have my drains. One could have come out but it was borderline so I figured if 2 had to stay in then what's the difference if I have 3?

I'll get them all out next Friday as I'll be out of town thru next Thursday. UGH.

So, my onco thought I didn't want to do ANY chemo and she was a bit freaked out. I told her I just can't do any taxane chemo.

She wants me to do 6 A/C, maybe every 3 weeks , maybe every 2 weeks.

I know I can tolerate A/C (or I think I can anyway) as I did the last time.

That's the plan, with close heart monitoring every 2 weeks or every week even.

She's okay with me getting a 2nd opinion but I don't see anything else out there for my 'status' so I doubt I'll get one.

So the next step is to see a cardiologist to clear me, then get a port.

I was hoping for a better answer but I guess I'll just have to suck it all up just like everyone else. :-/

Time to wig shop. I know my hair is gonna go after the 1st week.

Still trial shopping as one never knows.

Janis

Meow13

You did A/C the last time? Well I hope it works for you this time. Good luck.

Jaybird627

Update:

Been in Atlanta closing on my new home so not on the Internet much.

Had a few days to bask in warm weather, drive around, shop for appliances, forget about BC (except for the damn drains!).

I have an infection in one of my (non) breasts. The non-BC one. It's red as hell. Taking an antibiotic. Gotta love modern technology as all I had to do was text my non-breast pics to my Dr. and she got me a prescription. Hopefully ALL drains come out Friday!

I'm having the (dreaded) port put in next Tuesday (cunt - hahaha). I have very small veins so I know it's best but last time I suffered a collapsed lung which is still fresh in my mind 13 years later.....

So I'm guessing chemo will start after Memorial weekend. Blech! My onco came up with a statistic (??? I was already crying so I didn't really ask the source) about how my 10 year survival rate without chemo was 54%. She did NOT supply my 10 year survival rate WITH chemo. Oh, how so convenient for her! But for now I'll go with this until I see where it leads. I know I can 'do' A/C physically so I'll do it for now. Still searching, still doing herbs and essential oils (like last time) and this time using CBD oil.

Stay tuned...

J~

muska

Janis, I am sorry you are going through this a second time around. You have stage 3a this time which usually means quite a few metastatic lymph nodes (your profile is not complete, so we don’t know the details of your particular case.) When several lymph nodes are impacted chemo is certainly on the agenda.

Ladies who have stage 1 diagnosis do not always take risks of more advanced disease into consideration.

Having said the above I would talk with your mo about chemo options and maybe even get a second opinion on what chemo is best for you. AC has some lifetime limitations if I recall correctly (you mentioned you had it first time)

Good luck

Jaybird627

Latest update:

All 3 drains still in!

I'm a slow drainer.....

Calling in my numbers on Monday. Hopefully all drains out no later than Thursday as I'm heading down to my new home with a rental truck on Friday and want them gone already.

So the port is on hold until all 3 drains are out.

Yes, the A/C does have a 'lifetime' limit. But since I can't tolerate the taxanes my onco is trying the A/C. I'll have extra heart monitoring. Seeing a cardiologist for that. My nurse navigator confirmed the 4 a/c, onco had told me 6 as like the 6 taxane she said 6 a/c 3 weeks apart but the a/c is 2 weeks apart. After that it's rads. Moving forward.....

My CBDa oil finally arrived. It's nasty, like eating a roach, but I take a little in the morning and a little before bed. It can't hurt and all info points to a positive towards warding off cancer.

Being BRCA2+ I'm in a quandary as to how much conventional treatments to do as chemo is no magic answer and I can't do all alternative due to my job and needing to work and having no control over my work schedule. I'd love to have the luxury to be off to Mexico or wherever and have all natural treatments and every day be juicing and yoga and relaxing and such and only consuming organic stuff but my job is stressful and it's very difficult to be a vegetarian let alone vegan in my job so I'm doing the conventional TX with some CBD oil and hoping for at least another 13 rears of NED.

No success on researching trials. I guess I'm not a candidate for any at this point. Maybe that's a good thing?

Muska, my tumor was larger this time and more lymph nodes were involved, hence the 3a DX. New primary, not recurrence.

J~

Jaybird627

Been busy with packing. Slow draining I am told because I am too 'active' and have been lifting too much. Ugh.

Got 1 drain out last week and the other 2 out today. I did fudge the numbers just a wee bit otherwise they'd never come out!

Have my port insertion set for Monday. I hate to have it put it for just 4 infusions but whatever. Hope (???) to start chemo next week.

I'll plan to do radiation down in Atlanta after I move. Not sure of anything after that pill wise.

Have put the cbd oil on hold until/unless I have pain with the chemo as I'm not in pain now. Still taking herbal supplements and

using essential oils and don't plan on stopping. Will use Epsom salt, baking soda and essential oils for body detox.

Janis

Jaybird627

Well, it seems I'm about the only one who posts here so I may just stop posting.

Got my port yesterday, went to Great America today - rode roller coasters (!!!) - start chemo Thursday.

Yep, that's just me - I buck all traditions.

Meow13

Good news. Sounds like a good day.

Momine

Jaybird, as for the heart stuff with AC, my onc sat behind me during the first infusion with a stethoscope on my heart to monitor my reaction. I had a triplex before starting the AC and a follow-up triplex some months after. So far, so good, knock wood (7 years out).

Jaybird627

Hey Gals (and Guys?),

Update on me:

Still busy packing up (and purging out!) my house after 18 years of living here - 1 kid (present) , 4 dogs (2 present) later.....

This 'alternative gal' is now 2 A/C done! Ony 2 more to go, then on to rads down in Georgia.

Wanted to list the supplements I take in case anyone is interested.

Started taking Claritin daily to counteract the Neulasta (I got the patch version). Foung 60 count for 45 count price. Maybe it helps, I don't know. I'm packing and moving boxes and furniture so I do get back pain but I noticed it more for a few days after the injection.

I take a Xanax to sleep for a few days after chemo as my sleep is just not good otherwise. I take 2mg which I've gotten in Europe. My onc prescribed .25mg (I need the script for work reasons, random drug testing). It helps me fall asleep and stay asleep without groggy side effects.

Colloidal silver. Took before DX, still take. It's controversial and everyone thinks their product is the best. I take Soverign Silver brand.

Echinacea capsules , now daily but mostly during winter months before DX. Natures way brand.

Senna leaves capsules, took after BMX due to pain relievers causing constipation. None now.

Calcium, mostly daily, when I remember. Rainbow Light or mykind organics brands

Arctic Kelp. Country life. Just started taking a few weeks ago. Read somewhere we don't get enough iodine in our diets? We don't use a lot of salt but I do use Himalayan salt when I cook.

Activated Charcoal. at night. A few days after chemo. Country Life brand.

Bee Pollen capsules. Daily. Y.S. Eco Bee Farms brand. Haven't had luck using granules.

Maca. Vega brand.

Biotin. 5mg. Country life brand

Vegan B12 by Mega Food.

Keratin Hair Booster has biotin and resveratrol also. Have taken resveratrol separately. Not sure it works/helps. I've had fine, thin hair my entire life.

Vitamin K2. Whole foods brand

Potassium. I think 99mg is standard? I have taken Solaray capsules and 365 whole foods brand tablets. I take potassium for leg cramps. Fopund that right after chemo the cramps increased so I upped to 2x/day instead of 1x/day.

L-lysine to ward off cold sores.I think amino acids ar always a good thing.

Coenzyme b-complex caplets by Copuntry life.

Turmeric Supreme capsules. by Gaia. At least 2x/day.

Liver Dextox liquid capsules, whole foods brand.

Vitamin Code raw Vit. C by Garden of Life.

I try to take 1 TB. of raw apple cider vinegar daily but don't. lol.

And a day or 2 after chemo I do a KOR shot called black magic found at whole foods. refrigerated.

It has coconut water, lemon juice, ginger root and activated charcoal.

And this is how I think I stay so healthy and energetic.

Peace,

Janis

ReggieH

Hi everyone— Just joining this thread now because with bmx surgery 2 months ago I’m starting to post on this forum, which has a lot of helpful discussions so far.

I’m brca 2+. Having the brca mutation increases your risk of multiple breast cancers but it doesn’t increase your risk of recurrence of a cancer. Recurrence = metastasis

ReggieH

Hi Janis — You’ve already made your decision about chemo of course but I just joined this forum and I wanted to send you a reply because our cases are so similar. You can read my history below but like you, I’m brca2+ and had a bmx 2 months ago after getting a 2nd bc 19 years after the first one.

I did chemo the first time so I knew what I was in for but the regimen my oncologist was recommending was even worse in terms of side effects especially neuropathy. And chemo was only going to reduce my recurrence risk by 5%. So I’ve opted not to do chemo and have gone right to an AI. Feeling good about my choice! I hope you do too

TomMorrow

ReggieH - I see that you are PR- My wife has 5% PR and I've been asking others with low or no PR what their MO has said about it, especially with respect to overall prognosis (she has a high ER percentage)? Is there anything that you can share? We have a second opinion consultation tomorrow at the Moffitt Center in Tampa where this will be one of the primary topics.

Jaybird627

Hey Reggie,

I was off the site due to changing computers and not having password.

Update: I survived 4 A/C with at this time no apparent ill effects to my heart.

Having a 12 year old daughter scared me enough to have chemo.

My hair was slow to fall out. Just about 2 weeks ago my eyebrows

and eyelashes started thinning and now I have nothing left. Ugh.

My hair is not coming back fast enough for me!

I've lost 10 lbs. since this all started back in April and haven't gained it back yet.

My appetite is better but still not back to 'normal'.

I'm still taking all my supplements. I occasionally do detox foot baths, probably

should do them daily. Epsom salts, essential oils.

Shifted treatments to GA where we now live.

I like my new onc. He took 5 vials of blood! The PA said he's very thorough. lol.

He does tumor markers but didn't say anything about mine. Having more

blood work done in a few weeks as I was deficient in Vit. D (duh - lived in

Chicago and avoided the sun) and Vit. E. Those are the only 2 vitamins

that I wasn't taking! He wants me to take an AI after rads is done.

I like my rad. onc too. The techs are nice, everyone in GA is nice. hahaha!

Doing 25 rads, 6 done so far. A little different from my first time, more

precise I was told, more imaging throughout. Had to have R expander deflated

due to it being in the way of the beam. Will be re-filled after rads. Then next

spring have the exchange done.

I still worry about mets even though all scans so far have been clear.

My energy is okay. I'd do more but it's so dang hot in Georgia that I just

can be out in the heat and humidity for long.

I think that's about all.