My choice--refusing treatment

exbrnxgrl

edge,

That is one one of the crazy making things about bc; two people can seem to be very similar in terms of dx but their treatments, even if they are the same, can effect them differently. It really is frustrating. Again, I want to emphasize that cancer confined to the breast won’t kill you. It’s the metastasis to other organs that is incurable and fatal for almost all. Lower stages are trying to prevent mets. At stage IV we’re just trying to keep the weeds down before they destroy the garden.

Taking an AI only is rarely the path most people with mets take these days. As I mentioned earlier drugs that most mbc patients take with an AI were not approved 10 1/2 years ago. My mo is fine with me just being on an AI as it has worked well for me. She sees no reason to add Ibrance or anything else. I think it’s worth asking about given that you have limited bone mets. Take care.

Jons_girl

edgeofnoreturn: Sorry for my delayed reply. Yes I'm NED since surgery. No treatment except surgery. Exbrn is right we can't compare each others dx's. We are all different which is true. I am thankful it hasn't returned for me but it may return and I'm ok with the decisions I've made. I've actually read many stories now of people here who have had awful AI experiences. So while it may not be the best comparison as exbrn says, it does show us that women have a lot of trouble with AI's But not all women do I'm sure. It's great exbrn doesn't have issues with her AI.

I'm a pretty strict plant based eater now. And I'm trying to actively remove stress from my life. The stress factor is something that really makes a difference in my life. I'm still learning how to make my life much less stressed. I don't think all of us on this site that have gone through cancer are type A very driven people. But I've met a lot on this site who are that way. I tend to be very driven it's not a bad thing But it's not good for a persons health to be so driven and busy that you can't take time to relax and enjoy life. Im learning to learn to cut back in my life.

Im sorry to hear about what your going through with your fibro and Mets. 💕That's a lot. A friend of mine has fibro.

Our dx were somewhat similar the first time you had cancer. But my grade and stage were different. Grade 3 is supposedly much more aggressive than Grade 1. I do think there are people in this forum however where their stage 1 cancer returned. I Don't know much about howgrade plays a role in Mets and returning cancer?? I'm definitely not a expert.

If your MO and RO dismiss you, I'd find new ones. You should have support and if they don't fit that description there are many others to choose from usually

We are here for you. Chat anytime. Sending love andsupport to you💐💐

Edge and exbrn have a great weekend

exbrnxgrl

Grade is an indicator for aggression but like almost everything related to bc, it’s not set in stone. Both my breast tumor and my bone biopsy were grade 1, so yes, even grade 1 can metastasize. However, once you have mets, the grade becomes less important as the only goal at that point is to contain the progress of mets. Metastatic breast cancer and early stage bc are different animals.

To be clear, I do have some se’s from AI’s which is why I have switched between all three. My hands and knees experience joint pain but I manage with naproxen sodium and cannabis so it has not had limiting effects on my everyday life. I taught first grade for years before my recent retirement and still sub 2-3 days a week. Obviously I couldn’t do these things if the AI effects were crippling. Clearly the best se is being alive and mostly living a normal life for over 10 years with no progression.

As for diet, I do what a lot of stage IV folks do. I eat what I want when I can. I follow no regimens or protocols and am not compulsive in any of my health habits. This doesn’t mean I live on candy bars and pizza, it just means that moderation in all things works for me. Take care all.

Jons_girl

Exbrn: you don't have listed under your posts about your dx both times. Sorry if I'm being nosy. Can you share that with us? That's interesting to me that both dx you were grade 1. What stage were you at the first dx? And we're you positive er and pr and her2-? If you don't want to share that's ok. Just wondering.

Also, if you don’t mind sharing, how was your Mets found? Maybe you shared that already on this thread.

I'm sure there are lots of people who do just fine on AI's. No worries. That's good you don't have bad se's. Some women do have that.
For me, it was the right decision to not go on tamoxifen at the time I was pre menopausal. I'm post now.

Yeah I am a moderation diet person too. I am plant based. But occasionally eat stuff I wouldn't normally eat. I try to eat as healthy as I can tho most of the time.

Hope everyone has a great week!

exbrnxgrl

I only had one dx, but let me explain… I had a bilateral mx and was staged IIB. Six weeks later, on an unrelated PET, my bone met was found and then confirmed by biopsy. Since it was 2cm and a grade 1, it was agreed that I was actually stage IV de novo and never actually IIB. Yes, I am ER and PR + as well as HER2-.

With respect to AI's, of course I realize that not everyone does well on them. My point was that if one is stage IV, like edge of no return, we are talking about very different situation than lower stages. At lower stages we are not talking about a terminal disease, at stage IV we are! Stage IV is incurable and folks like me are outliers.Stage IV is a whole different animal than lower stages.

I removed my dx line because it was a mess after the site update. Too lazy to try to re-enter it. You are welcome to ask me anything as I am very open about my mbc.

edge_of_no_return

jons_girl and xbrnxgrl - thank you again for your input. i started my mbc journey just last year and am clumsily mucking through it all. i follow the stage 4 forum discussions for bone mets, arimidex and ibrance and a couple of others. i'm finding myself re-reading what all of the fantastic people have posted two or three times, and i get a new perspective each time. still trying to get my signature line to make sense. haha that may never happen.

Jons_girl

Hi Exbrn sorry it’s taken me forever to post after you shared your experience above. Wow. Thank you for sharing what you’ve gone through. your grade was same as mine. Tumor was larger but er/pr and her2 same. Your dx just shocks me and how that all happened. There is just no good diagnostic for cancer. It seems like others have these stories. Where it was missed. If I had not felt my tumor, I don’t know when they would have found it. It wasn’t on the diagnostic mammo I got a copy of the dvd to see if I could see it. Dense tissue. I can see the stickers they put on two areas to check. But the tumor isn’t there. Ultrasound tho saw everything even the blood source to the tumor. But I think the system isn’t good for checking women for breast cancer. Mammos aren’t perfect. But there are women here who have had ultrasound miss their cancer. I am adding mri every few yrs. I think mri is a pretty good diagnostic. I have diagnostics every 6 mo. Thats my treatmentsurveillance. Because of no drugs or rads. but I’m ok with that. Yes your right about the AI’s and lower stages of cancer vs denovo.

edge of no return: you’re welcome. We are always here for support. Sorry it took me forever to reply.

I hope you both have a wonderful week!

exbrnxgrl

Jon's girl,

Nothing was missed in my original dx. All my imaging clearly showed my breast tumor. There was no reason to suspect metastasis which is uncommon, about 6%, at original dx. So, nothing was missed, overlooked, etc. My situation was simply a weird fluke as is my 10+ years of progression free survival. Sometimes, odd things just happen!

Jons_girl

hi Exbrn:

yes sorry, I probably should have said what I meant differently. There are quite a few on this site like myself, who stuff wasmissed with diagnostics. And fluke things happen like your situation, yes. But a lot of that happens. All you have to do is take a hour to read peoples stories here. It's just sad stuff happens like that. I know it's life. But we as a society with all our knowledge should be able to do better to catch stuff. 💐

Have a wonderful day. I'm so glad your 10+ yrs out from dx

Dean75

I have been looking for a place to land, and it may be here. I was diagnosed last April with a grade 2 infiltrating ductal carcinoma of 13 mm, Er,PR positive. I was first on anastrozole to try to shrink the tumor. I refused chemo, having watched my 28 year old daughter suffer through treatments for cancer of an unknown primary. She did not make it. I never wanted anything to do with endless treatments, but had a mastectomy on the right and lumpectomy on the left. I was talked into radiation by my breast surgeon. I am still on anastrozole which doesn't seem to be working. The cea test was elevated on my last blood test. The oncologist said to do a ct scan. That was on 6/20/22. It showed lymph node enlargement on the chest wall and something in the lumbar region which may be bone metastasis. So the next test would be a PET scan, but my oncologist already believes that the cancer has spread, and I am in stage 4. After the PET scan, he is recommending a broncoscopy and then Ibrance. I don't want to do either. The side effects of Ibrance are just something that I could not tolerate, but I am also afraid of making the decision to do nothing. It affects the whole family, and I just wish they my son and daughter would not have to go through this again. They watched their sister die from cancer. One more thing. I am 76. This is my first post, so I may have screwed something up. Apologies in advance.

Dean75

ElaineTherese

Hi Dean75!

I'm sorry to hear that your oncologist believes that you may be Stage IV. You may want to check out some of the Stage IV threads like the one about Ibrance:

https://community.breastcancer.org/forum/8/topics/828848?page=2696#post_5757942

Or, maybe bone mets:

https://community.breastcancer.org/forum/8/topics/789492?page=2708#post_5757489

You certainly have the right to refuse any treatment you don't want. However, it may help to discuss such decision making with someone else who has had to decide about Ibrance or how to treat their bone mets.

I myself was Stage III with triple positive cancer. I did the works -- chemo, targeted therapy, surgery, radiation, ovulation suppression, and an aromatase inhibitor. But, that was my choice.

((Hugs)) Good luck, figuring out what is right for you.

Jons_girl

hi dean

We are here to support you in whatever decision you make. Sending a hug to you! Chat anytime.

wrenn

Hi Dean, I'm sorry you are not only having to go through the cancer scares but having to make such serious decisions makes thing worse.

Would it be possible to discuss it all with your children. I am 75 and have worried about how certain things would affect my daughter and then having chats with her clears things up.

About not tolerating the treatment what about starting it and if it doesn't go well then you can give it up or decrease dosage. It might be worth it to go ahead with the scans without deciding yet on whether you will do anything with the results they show?

Come here to yack it out either way. The site itself is a technical mess at the moment but the members here are very helpful both with information and support.

Wishing you the best.

smc123

Dean, I don't know if what I have to write will be helpful to you but my own mother decided not to seek treatment when she was diagnosed with pancreatic cancer at 75. She knew my own treatment for breast cancer was manageable but she was not up for a “whipple" surgery and the follow up treatment. She immediately entered hospice and our family really did not know what to expect. We were blessed to have another 8 months with her and surprisingly her pain was managed with Advil up until the last few days of life. I don't want people to take this wrong but I thought her decision was very brave and left me grateful and inspired how peaceful her last months of life were.Good luck.

Anonymous

Hi Dean - you did well on your first post!

Do come round the bone mets and Ibrance threads and hash out your fears with some of us who have been on the treatment (or still are) and have similar mets locations. We've got ladies in the 5+ year club on Ibrance and doing well, leading active lives. Once the dosage is dialed in, it can be an extremely easy drug to take, once a day.

However, everyone has their personal reasons for treatment, limits as to how far they may want to take conventional treatment, or if they want to forego completely. We had one Ibrance taker in particular who was absolutely adamant that she would let go once Ibrance failed her, that she was not willing to try treatments beyond that drug given her past experience with IV chemos. That is another possible approach/consideration.

Elderberry

Dean: Hi! I am puzzled why your MO doesn't want to do a PET. It would help confirm where the mets might be and that could change treatments as well. As for not doing treatment, that is up to you and your wishes need to be respected. I am about to turn 72. I plan to continue my treatment as long as it is working and I am feeling okay. Quality of Life at Stage IV.

Wrenn is so right. Talk with loved ones. Maybe talk to a therapist. Consider trying treatment first.

Do check out the various threads on the BCO site.

I wish you the best in whatever you choose to do.

Dean75

To everyone who responded, thank you so very much. I will check out the stage 4 threads and see what people have experienced. Thank you elainetherese and sondraf. My onc has a tendency to downplay side effects. The fact that it affects the immune system is the scariest part. I happened to my daughter, and she ended up having to take shots of neupogen. She was on many chemo drugs. I do need to talk more to my kids, but, I know, that there are a lot of things that they don't want to hear.Thank you, wrenn. My daughter does not want her kids to know that I have cancer. SM123 I appreciate your story about your mother. Thank you for your support and hugs jons girl.

This morning I made the appointment for the PET scan. It will be on 7/14. Then the next step, whatever that may be. I just want to be comfortable with whatever decision I make.

How do you handle the fear and anxiety? I was doing okay until that last conversation with my doctor, and the seeing the ct results. It has taken over everything. The only thing that helps is xanax, but I am also on Zoloft.

Again thank you to everyone. Happy 4th.

Dean75

elderberry my oncologist does want me to do a PET scan. He has also mentioned a bronchoscopy after the pet scan and then Ibrance. The ct scan indicates that the enlarged lymph nodes are by the chest wall. I read that their size indicates malignancy. I know nothing about bronchoscopies. I have also read that the price of Ibrance is ridiculous. I didn't expect that there would be anything going on with a possible bone metastasis, but that is another possibility. Going to work in the garden and try to forget about all of this.

Elderberry

Dean: apologies. I misread the info about the PET. I am glad you are getting it done. Please keep us posted. As for the fear and anxiety. I wish there was a quick fix. You just have to do whatever it takes to keep the lid on. I used Ativan twice a day for almost a month. Having come to terms (as best as anyone can) with the DX and the treatments I only use it occasionally. Well, sometimes once a day for a few days straight and then not at all for weeks. I hope being out in your garden helped.

We are here for you.

fathea

your not alone

when I was with mom in the doctor clinic I saw one patient refusing treatment and she only comes for mamo and follow up only.

I was told she was diagnosed 10 years back and did nothing no surgery no medications