My sister just finished her treatment. Now what?

bigbrother

My sister was diagnosed with stage 3 breast cancer last summer. She had a mastectomy on one side. She just finished her 4th round of chemo. She opted out of 2 more rounds. She decided not to do the radiation.

She's doing well and seems strong and pretty happy. But I wonder if she's telling me everything which is why I'm trying to do some research online. I hope you can help.

She said that "the doctors got all the cancer." Can that be true? God, I hope so.

But since it had spread to 5 lymph nodes I thought that it was always possible that they didn't get it all. I'm not trying to be pessimistic. I just want to be informed and right now my sister is in a very upbeat mood so I don't want to ask her too much and bring her down. She's practically flying, saying that she "beat cancer."

I guess I'm just wondering if there's any follow up after treatment? Do doctors tell patients their prognosis after treatment? Does it change from when they were diagnosed? What happens now?

Moderators

Bigbrother-

Welcome to our community here at BCO. We hope you find the support and answers you're looking for.

There is always a chance that the doctors weren't able to get all the cancer. Even after the most extreme surgeries and treatments, cancer can remain, and can come back. We're sure your sister is under the care of a team of very competent doctors who would've advised her on her options for treatment. Has she mentioned why she chose to forgo radiation and the last two rounds of chemo? Did surgeons remove the five nodes that it had spread to when she had her mastectomy?

It's good that her spirits are high! Doctors will typically give a clean bill of health once they find no evidence of disease (NED) after completion of treatment. She'll likely have follow-ups twice a year until she hits the 5 year mark, which is when her chances of remission go way down.

We understand not wanting to bring her down, it's important for her to remain positive. Have you tried asking about what her doctors are saying? Or maybe ask if you can accompany her on one of her appointments?

The Mods

Beachbum1023

Hi big brother, You will find the best real time info here on the boards. Stay away from Dr. Google, a lot of the info is outdated or wrong. I am sure that you are happy that your sister is doing well, and I am sure that you don't want to upset her. But her tumor is just that, and it is hers alone. It won't be like mine, or anyone else for that matter. There isn't one size fits all with breast cancer. My treatment is totally different, and is custom to my specific case. I had chemo 8 dose dense then a mastectomy. I am now doing rads, and then back to see my MO for what's next. I am not sure why your sister opted out of the last two chemo, and did not do the radiation. If she had 5/5 nodes her Doctor would have explained all of this in great detail to her. And any further treatment would have been on the treatment plan from the BS, MO, and RO had she done the rads.

All of my Doctors have given me treatment plans, follow up plans, surgical options, and other referrals for necessary treatments. I would think that a heart to heart with your sister may calm your fears. There is just so many variables to every case, that I could not even try to guess. I wish you luck, and your sister is a very blessed sister to have such a caring brother! But it is best to talk with her.

wrenn

Hi big brother, I am sure it is hard for you to not have information to calm your worries but it looks like your sister is either trying to convince herself that she beat it (and she may well have) or her doctors see no signs (using scans).

Either way this is the way she has chosen to deal with it and you have to respect that no matter how hard it is. It looks like she is happy with the outcome and a good attitude goes a long way.

She will likely have follow up with the oncologists in a few months to see how she is doing. I see mine every 6 months. If there are no symptoms of anything else going on I make an appointment for the next 6 months.

I think you have to try to move on if you aren't comfortable asking your sister if she would mind giving you more information. Take care of yourself.

Morwenna

Well, the Mods reply above asked the questions that sprang to my mind anyway!

One thing: She'll likely have follow-ups twice a year until she hits the 5 year mark, which is when her chances of remission go way down.... I think that was meant to be "chances of recurrence go way down" !

Is she going against medical advice, or did they tell her further treatments were optional? With 5 nodes affected, I think the norm would be for radiation to the axilla.

I know you don't want to bring her down, but do you think she's in denial? It's hard to know what to make of it without knowing what the full story is ....

It's good she has you in her corner. I felt very alone during my treatments. My husband was there, but very much the onlooker; not really involved at all ......

bigbrother

Thanks to everyone who answered. May god bless you all.

I asked my sister some questions based on what you asked me. Here's what I know: the surgeon removed the 5 positive nodes in an axillary dissection. They did want her to do 2 more rounds of chemo but she opted not to because she said her research showed that the stats don't prove that it would help that much.

I know the chemo was really hard on her. She had a pretty bad allergic reaction to the taxotere. I think it was worse because she never took any steroids, which was a source of pride for her. She hates putting chemicals of any kind in her body.

She opted out of radiation even though her team of doctors recommended it. She said it's because of the risk of lymphedema, heart damage, and damage to her reconstructed breast. She's doing vitamin C injections instead of more chemo and radiation.

She started to tell me about hormone therapy and a hysterectomy, things her doctors have suggested. Does that make sense? Why would that happen? She started to get pretty upset about that so I didn't push her to tell me more. Whatever it is, she's decided not to do it.

She said it is all her choice and I respect that. But I do worry about her. A big part of me wishes she had done everything her doctors recommended. But I know even that's not a guarantee. I don't think she's in denial but I do think she's being stubborn (she always has been, god bless her!). She's a marathon runner and a trainer at the local gym and she hasn't stopped running or working out through all of this. She hates not being strong.

It's good to know that there will be follow up scans to see if there's more cancer. She didn't mention that to me but she did say she has follow up appointments. I asked her if she wanted me there with her and she said no. I'll just keep being here for her and asking questions when she seems open to talking about it. Which is rare!

I do wonder if many women make choices like my sister? To opt out of recommended treatment?

WinningSoFar

It's soooo hard to watch someone you love make choices that you weren't a part of, don't fully understand, and may not have made for yourself. It's really hard not to be curious but it sounds like your sis doesn't want to go into it very much (probably because she's worried herself). What's that line: they also serve who stand and wait. I guess that will be your role.

There just are no hard and fast rules. Had she done more treatments, would that make a difference in outcome? Probably a little. But that doesn't mean the cancer will come back, or that it won't. One thing to remember is that even if the cancer comes back, more treatment is available. It's not over until it's REALLY over. I've had breast cancer twice and I'm still kicking.

bigbrother

I understand that these are not my decisions to make. I'm coming here because talking to my sister about it is upsetting to her. She gets very angry and I feel bad for asking her to talk about it. But I do feel like I need to get a sense of what's next because of her two boys. She's a single mom and I'm their godfather and heaven forbid anything happens to her, they'd come be with me. I believe she will survive this and live a long happy life but I want to stay informed.

I'd like to know what her options are and what the doctors are telling her. Since she won't let me come with her to the doctor and she tells me very little, I thought I could get some information here about what happens after treatment. Sounds like I'll just need to man up and wait.

wrenn

I don't think there is anything wrong with wanting to be informed but it is so hard to predict. Every situation is different. Even if someone had the exact diagnosis as your sister and chose the same treatment/non treatment the outcome would not be identical.

We all have to live with the uncertainty and it looks like you will too. :-) It is not easy but supporting and trusting her decisions will go a long way to her keeping a good attitude about her future. Just stand beside her without judgment.

And be good to yourself. It is a struggle to watch loved ones deal with cancer.

WinningSoFar

dear brother,

I wouldn't be surprised that after a while your sister will be able to share more of her decisions with you. Some people react to fear by shutting down any dialogue. Actually, I'm a bit that way myself. The more uncomfortable I am with my own decision, the less I want to talk about it. I don't know that's your sis, but maybe she's like me. Think about when she has confided fully in you and try to recreate those same conditions. That's my advice.

gemmafromlondon

Dear Bigbrother - how lucky your sister is to have such a loving and caring brother. That is the very best you can do for her. Each one of us has to make decisions in this journey and they are what we want to do - even if they may not be the best decisions by other people's views. I can understand where she is coming from and that she gets angry if you question her. I can understand too your concern especially regarding the boys but we just cannot forecast the future. Live for now and be upbeat - children pick up easily on anxiety in the air. Wish I had you for my brother!! All the very best.

MagicalBean

Bigbrother-You are a fantastic guy, and your sister is so lucky to have you in her life. It's difficult to answer your questions because this disease is so individual and, like wrenn said, two people with the same diagnosis and treatment can have very different outcomes. If you read through these threads, you will see others who have shortened or skipped their treatments recommendations. No matter what avenue they chose, they do not appear to regret the choices they have made. I wish you and your sister well, and please check in whenever you feel the need. The people who post here are wise and generous with their knowledge and their compassion.

Tomboy

Good catch, Morwenna!

labelle

Some of us have a very hard time discussing our diagnosis and treatment choices with other, including loved ones. Perhaps she will want to talk about it with someday, but obviously not now. The best thing you can do is to let her know you are and will continue to be there for her-we all need people we know we can count on as we work thru this.