sister refusing chemo for stage 3 IDC

Prayerful1979

hello everyone! I would like to thank all the wonderful ladies here..this forum gives me hope!This is my first post here. My sister just got diagnosed with Stage IIIc IDC.She is refusing chemo.. she just wants to do surgery , radiation and hormone therapy. She is terrified of chemo and fears it may push her into depression. She has been struggling with depression for many years. Has anyone with stage 3 breast cancer skipped chemo For any reason? Any suggestion , advice , thoughts are really appreciated...! I am just starting to learn about this cancer and any help is truly appreciated.. thank you all..

Tumor 4cm IDC node positive

Er + 100%

Pr+100%

Her2 negative

Grade 2

Ki 67 - 16-18%

The cancer has not spread to chest wall or underlying skin.

ElaineTherese

Hi!

From the information you've provided here, it doesn't look like Stage IIIC cancer to me. How many lymph nodes appear to be compromised? Are any of the nodes near the breast bone?

As far as skipping chemo, that is possible with HER2- cancer if your sister's Oncotype comes back with a low number.

moth

For some patients, surgery alone is curative. The fact that it's already in lymph nodes is problematic. Spread has already happened, hopefully only to lymph node

The point of chemo is to reduce risk of recurrence outside the breast in the future. It only takes one cell to escape and lie dormant and then come back... Once it's spread to outside organs, ie metastasized, it's stage 4 and currently uncurable though treatments can buy time.

You can get a sense of how much benefit she will get from chemo by entering her stats into this Predict calculator https://breast.predict.nhs.uk/

Also reassure your sister that chemo is not like portrayed on tv, esp years ago. Side effects are controlled, some people are able to continue to work during chemo. Oh and psychiatric medications are mostly compatible and many cancer centers have a psych team as cancer is a difficult disease even for those who weren't suffering from depression or anxiety prior.

Sunshine99

Prayerful, I just wanted to chime in about the chemo. I had it (Taxotere and Cytoxin) 12 years ago and it was NOT the horror I expected it to be. Before I started, I went to a "chemo class" at the hospital. I was the only one there, and the wonderful nurse gave me lots of helpful information. She also took me on a tour of the chemo room. Much to my surprise, there were people siting in chairs, hooked to IVs who were reading, watching TV, chatting, etc. No one was crying or moaning in pain and no one was throwing up (my biggest fear).

During chemo - I had four sessions, three weeks apart - I took steroids the day before, the day of, and the day after chemo. They had a wonderful anti-nausea drug called Aloxi. I had virtually NO nausea the whole time. Chemo was on Thursdays and I felt great on Friday, a little yucky on Saturday, and kind of flu-like on Sunday. By Monday, I felt pretty good again. I wasn't working at the time and most days in between chemo sessions I walked a mile to the gym, worked out on the treadmill and then walked back home.

I know that not everyone's experience will be like mine, but you can be reassured that it's not a guarantee that you'll be horribly sick for months. I had one friend who had one session of chemo and quit because she just didn't like it. I didn't press her for details.

If her doctors recommend chemo, it's worth a shot. She can always quit if she really reacts badly to it.

Wishing the very best to you and your sister.

Prayerful1979

Thank you so much for your reply . She had lumpectomy 5 days ago with axillary node clearance . 11 nodes tested positive for cancer. Thank you for taking time to reply. This is all very new to me . It’s very overwhelming to google. What a wonderful community here ! thank you !!!

Prayerful1979

thank you so much! It's very comforting and reassuring to read your post. Thank you for the information ! It’s good to know there are medications compatible with cancer treatment for depression. Thank you !

Prayerful1979

Thank you for sharing your chemo experience. I think it’s worth a shot too. Thank you taking time to reply to my post. I really appreciate it! I heard somewhere in rare cases , chemo makes you completely bald forever. Is it true ? How long does it take for the hair to grow back

MountainMia

It is extremely rare to permanently lose your hair. And how long it takes to grow back varies a lot. Some women start to have regrowth while they are still on chemo. Some don't. I think it's typical for it to start anywhere from about 1-2 months after chemo is done. Mine was about 2 months.

I'll also say about my chemo experience, I had very little nausea and did not ever throw up. The worst side effect for me was that I experienced deep fatigue, which didn't set in until about 3 weeks after my last chemo and was relieved (to much more normal tiredness) about 3 weeks after that. Aside from those 3 weeks, I was able to carry on most of my regular life, albeit at a bit slower pace.

Sunshine99

Prayerful, I've heard of the permanent baldness, too, but my hair grew back. I actually don't remember how long it took. Being bald was not as bad as you might expect. I do know that it can be pretty devastating for some women, but I fortunately was not one of them. I had cute hats and caps to wear when I was bald, and had a wig that I wore to church and on a trip to Hawaii that we took during my chemo treatments. Sometimes, I would just go "topless". I was still bald a few months later when I had to get my Driver License renewed and needed a new photo. I asked the lady behind the counter what I should put for my hair color if I was bald. She didn't laugh. Oh well, I still thought it was funny.

MelissaDallas

Prayerful, another thing to consider: some women can’t tolerate endocrine therapy and quit it fairly early on. The effectiveness of some of the endocrine therapy drugs can be reduced by certain antidepressants. The drugs and their effect on estrogen levels can also worsen depression in some women. She has pretty serious cancer to skip chemo and the find out she can’t handle the drug therapy either.

WC3

Prayerful1979:

I'm sorry about your sister. I had neoadjuvant chemotherapy, which is chemotherapy before surgery rather than after. I had some low moments on account of the fatigue and the fear of knowing the cancer was in me, but I remained in fairly good spirits otherwise. My medical team was great, my infusion center was bright and sunny and filled with kind, positive and encouraging people, and my family was very supportive.

If she has not already, she should discuss her concerns with her oncologist. They might be able to develop a chemotherapy care plan that factors in her tendency towards depression and her cancer center may offer additional resources such as counseling and wellness programs. She can always stop the chemotherapy if she feels it is more than she can handle.

My experience with it was similar to Sunshine's in that it wasn't as bad as I thought it would be.

DATNY

Permanent hair loss can only happen with Taxotere. But there are many types of chemo.

kathabus

I had a positive node and avoided chemo and instead removed ovaries and did hormone therapy....That was MY “chemo”...but that was due to a very low oncotype score. And it was a hard decision. In the end I followed the advice of my team.

Your sister is in a different situation though. It’s my understanding that you can only have 1-3 positive nodes to be “eligible” for Oncotype (genomic testing).

I know chemo can be a hard road, but I hope she can at least consider it so she makes a wise and well-informed decision. She may come around. She’s lucky to have you!

Prayerful1979

Mountainmia , Mellisadallas, sunshine99, WC3, Danty :

Thank you all for your reply. I cannot stress this enough. It feels very comforting to read your replies. Makes us feel like we are not alone. thank you !!! About the chemo , Is there any website/link to find out about different types and chemo?

Prayerful1979

Kathabus , Thank you ! Yes , she has many positive nodes. It’s scary at this point to skip chemo. With this COVID situation, her depression is getting worse too. I think we will have some clarity when we have a treat plan.

Beesie

From the information pages on breastcancer.org:

https://www.breastcancer.org/treatment/chemotherap...

If you click on each type of chemo, there is information on when it's used and the side effects.

TectonicShift

I was terrified of chemo but I wanted to try everything possible to survive. I knew that if I didn't do everything I could, I'd be hating on myself later if the cancer comes back. I wanted the peace of knowing that I tried everything.

Chemo is not the most fun thing in the world but it wasn't nearly as bad as I thought it would be. It's not like it used to be and it's definitely not like people might remember it being portrayed in movies and TV. The drugs to control any nausea are great these days and work for most people (not all but most). I remember after my first chemo I went out for lunch at a nice restaurant.

There are people who have what's called Complete Pathological Response to chemo. That means it kills all the detectable cancer and thus presumably any residual or microscopic cancer too. Those are the luckiest people. Their particular cancer biology matches up with the standard-of-care chemo. Your sister could be one of those people!

buttonsmachine

Prayerful, treatment decisions are often difficult. Your sister's best asset will be doctors who are attentive and can help your sister minimize side effects, depression, and other problems stemming from cancer and treatment.

As others have pointed out, chemo is not always recommended depending on the characteristics of the tumor, but sometimes chemo is a central part of the treatment plan. I think the biggest question is how much her doctors think it could benefit her, given the information they have about her tumor. Have the doctors made a recommendation on chemo yet?

Some people do well with chemo medications, others really struggle with them. There can be long term effects from chemo too. (However, I personally came through chemo mostly unscathed.)

Also, has your sister had a PET scan or other imaging to rule out distant metastasis before proceeding? That can be really important information from a treatment and quality of life perspective.

Best wishes to you both.

Claire_in_Seattle

When my oncologist told me that I had a better than 80% survival outlook with chemo and hormonal therapy, and about a 50% chance without, you didn't have to tell me twice to sign up. Being Stage III with eleven positive lymph nodes, your sister's chances without chemo are not as good as mine were.

Chemo was a slog, but I didn't change my normal life all that much other than "dial things down" a bit. I was able to exercise throughout which got me up and running a lot sooner than otherwise. To see the opposite view, you may want to read Wornoutmom who sadly didn't make it. By the time she realized that she really did need chemo, it was too late. We had urged her to do chemo, but she thought that it was only an "extra precaution".

I was actually in a good mood throughout most of chemo as it was far less dreadful than I had imagined. My goal was to kick cancer to the curb, and I felt that I would most likely win. I did.

I will say one more thing. This is cancer, and it's very different from a chronic ailment such as arthritis where OTC supplements may be all you need. With cancer, it's important not to delay treatment and to use the best weapons in the battle that science has to offer.

I wish your sister great success and a fabulous future. No one wants to do chemo, but guess what, it's one of the reasons I am here to wish her well. - Claire

Prayerful1979

Bessie , Thank you so much for sharing the link.

Prayerful1979

Techtonicshift , Thank you for sharing your story. I hope my sister has complete pathological response. Thanks for the wishes

Buttonsmachine - She had PET CT scan. There is no distant metastasis. Thank you for your reply and wishes.

Prayerful1979

Claire_in_seattle , Thank you so much for sharing your thoughts on chemo. It’s very encouraging and reassuring! Thank you for the wishes !

MountainMia

Here is another website with information on different chemos, and on side effects. Remember, though, you don't get to shop for your chemo. The medical oncologist will recommend a course of treatment, based on science and on their own experience. This website is useful for reviewing information about the treatment they recommend.

http://www.chemocare.com/

Salamandra

Depression can be a beast and it makes sense that your sister is concerned about it.

Does her cancer center have a psychiatrist who can follow her and support her? If not, she should consider finding both a psychiatrist and a therapist who have experience with cancer patients. That might be something you could help her with - it can be a slog to find mental health practitioners when insurance is an issue. Her cancer center or insurance provider may also be able to help with finding that.

Mental/emotional health is huge and if her concerns about it are serious enough to stand in the way of her getting standard of care treatment, they should be serious enough to her to explore all possible supports that could help her feel more confident in accessing treatment.

I ended up seeing a psychiatrist through my cancer center and it's been invaluable. He really understands the cancer processes and is more than on top of all possible drug interactions. He does a lot bigger chunk of talk therapy than most psychiatrists.

Sending good vibes!

Prayerful1979

Mountain Mia , Thank you for sharing the link

Prayerful1979

Salamandra, She has been battling depression for many years. This cancer diagnosis is taking a toll on her mental health. We are looking for a therapist who has some experience dealing with cancer patients. Thank you for the good vibes and sharing your thoughts.

Shellsatthebeach

My cancer was locally advanced and chemo was recommended prior to surgery. It shrinks down the cancer and makes it more effective for the surgeon to get clean margins if the tissue is very diseased. I was scared of chemo but so glad I did it! It was not at all as bad as I expected. Sending positive thoughts your sister’s way.

Madbarvie

i just found out I have a mass in my right breast. I have Lupus so my immune system is not good and I have a cow valve in my heart. I think I can't go on chemo or radiation. I'm crazy with dark chocolate I eat ir every day, and coffee I love coffee. Is that bad? I don't even know what to eat. I'm not ready for this and dont know what top do

MinusTwo

Madbarvie - there are so many things more important to research right now besides coffee & chocolate. For now, you need to figure out grade and if you are hormone positive, or HER2+, or if you have IDC, or ??? Get lots of testing & scans. Meet with a medical oncologist, maybe a radiologist even if you're not sure. Talk to a surgeon. In my opinion, I wouldn't worry about coffee or chocolate.

Madbarvie

I am with her. I just found out I have a mass in my right breast and something under my arm pit. I don't even want tipo do a biopsy, I want to go straight to surgery and remove both breats but my family doesn't agree and also I think they won't do it without first do a biopsy. If is bad I go straight to surgery. No chemo no radiation if I can

MinusTwo

If you want to avoid rads, your answer will be a mastectomy. But you are right, they will need to do a biopsy and lost of different scans before surgery. Hopefully you might be able to skip chemo too but it depends on what they find.