I hope it's okay to post here

bigbrother · April 2015

One of the ladies in the Caregivers group suggested I post here. A little background. My sister had surgery on one side and finished chemo and just had an MRI. She told me they always do an MRI after chemo. Is that true? She said the doctor said they found cancer (in her lymph nodes? she wasn't clear) in the MRI she just had after her chemo. But she said it's nothing to worry about because 90% of MRIs after chemo show some cancer is still there. I'm trying not to worry but that doesn't sound right to me. Does it sound right to you?

It's Stage 3 is what she told me. She had a mastectomy on one side and 4 rounds of chemo (they wanted to do 6-8). She decided against radiation. They removed lymph nodes on one side and found 5 positive. So the fact that they found more cancer in the MRI seems serious. She says it's nothing to worry about. She gets upset when we talk about it so I don't pry. I just let her decide what to tell me. She's in charge of what she wants to do next. I know you can't diagnose her . I've learned from reading posts that every case is different. But should I be concerned?

A major reason I'm trying to stay informed is because I'm godfather to her boys. God forbid anything happens to her they'll come live with me (no dads in the picture). I don't know what to do. The info she tells me is sporadic and sometimes doesn't add up but I know it's her choice. I've offered to come to the doctor but she said no. I guess I'll have to let her handle all this and wait. It's hard.

GraceB1 · April 2015

Usually radiation is used to kill cancer in lymph nodes. I still had positive nodes after chemo when my MX was performed and then had radiation. I had an MRI a year after the MX to make sure I was clear before undergoing reconstruction this summer otherwise my MO said no scans unless I had symptoms. Each doctor is different with their treatent plans. Do you know why she declined radiation? It really wasn't too bad to get through (the easiest part for me) other than having to be there every day.

GeorgiaRai · April 2015

Welcome, bigbrother!

Are you saying your sister had mastectomy & has completed her chemo therapy, and an MRI is showing more cancer? Or was the MRI done between chemo and surgery?

I had neo-adjuvant chemo followed 6 weeks later by mastectomy. At the time of my surgery, there was still active cancer in all 4 quadrants of my breast, but it was all removed by surgery. Neither my oncologist or my surgeon expected me to have a "complete response" to the chemo because of the type of tumor I had; they stressed that the chemo was meant to "search & destroy" any stray cancer cells floating around in my body. The fact that it also shrunk my tumor enough to make it operable was a bonus.

I did have rads, though, just to show those stupid lymph nodes who's boss! lol

FYI - I think of cancer as a dandelion. You find one in your yard, so you dig it up (surgery), spray the area with Round-Up (rads) then treat the whole yard with Weed-B-Gone just in case any of the flowers turned to seed and blew across your lawn. (chemo).

bigbrother · April 2015

Thanks for responding. To answer your questions, my sister had surgery, chemo, MRI, in that order. She said everyone has an MRI after chemo. She said 90% of MRIs after chemo find more cancer. She decided against radiation because she said the risk of heart damage. She told me the MRI was to confirm that she was cancer free. But then she said they found more cancer and she made it sound like that's to be expected?

I like the dandelion comparison! I know I'd be using Round Up and everything else I could get my hands on but that's not my sister.

ElaineTherese · April 2015

bigbrother,

Sometimes, the cancer is contained within the breast, so surgery will typically remove all of the active cancer that is visible to an MRI and that can be found via biopsy. (If not, the surgeon has to go in and take out more tissue.) Did she have any lymph nodes removed with her surgery? Did any test positive for cancer at that point?

If given PRIOR to surgery (neoadjuvant), it is sometimes possible to have the chemo wipe out all of the active cancer. That is called a pathological complete response (PCR). Many women don't have a PCR, but do find that chemo significantly reduced the size of their lumps and helped clear out the nymph nodes.

It is concerning that your sister had surgery, chemo, and then they found the dubious lymph nodes (correct me if that is the wrong chronology).

GeorgiaRai · April 2015

I was thinking the same thing, ElaineTherese - positive nodes at the end of treatment seems very concerning!

I only had one MRI and that was diagnostic, before any of my treatment began. I didn't know it was standard to have one after chemo, but at any rate, obviously not "everyone" has one! It was the PET scan and Sentinel Node Biopsy that showed I had positive nodes (prior to chemo/surgery). I asked if my surgeon would take out more nodes during my BMX to see if any more than the original 8 were involved, but she said no, it didn't matter at that point because the chemo and rads would take care of them.

bigbrother, it must be so hard to respect your sister's decisions when you may not fully understand or agree with them. I don't know her situation, of course, but we all have to get through this in our own way. She's lucky to have you there to support her.

Kathleen26 · April 2015

You're welcome to post here bigbrother. I certainly understand your concern. I did not have an MRI after the one used to diagnose me. I had chemo, then surgery, then radiation. I too am concerned that your sister thinks finding cancer on a post-treatment MRI is of little concern. It would concern me. I had cancerous lymph nodes found during my surgery, so also after chemo. These were of course removed, and then I had the radiation to clean up anything left. I wonder what her doctors think of her decision.

I had radiation to both sides, about twenty years apart, lastly almost five years ago. The first time around they made a big deal about the potential for heart damage, but the last time they said it was a much smaller risk than my first go-round, due to improvements in how they set it up. Either way, the risk was always considered small and not worth worrying about compared to cancer.

There is a time-limit to when radiation (which is a local treatment) is given after other treatments, so if your sister is going to change her mind, she should do it soon. I know it's hard to be in your place where you have to let her make her own choices, whether they make sense or not.

Holeinone · April 2015

brother, I think your sis is confused. The statement that 90% of ladies still has Cancer after chemo is not correct. I have no idea what the statistics are, but that is way off.

I was dx stage 3 with lots of Cancer in the axillary ( armpit ). I did not have a MRI before or after surgery. I did have a Pet scan, after surgery, before chemo, because of the amount of Cancer in the nodes.

The fear of heart issues after radiation are real. The tech that did my echocardiogram, said it is not as near as common as most people think. That they used to do that test routinely, but found it was unnesscesary, unless you are having symptoms. I had to get one because of a recent surgery, GP felt it was a good idea.

Getting radiation, ( for me) was easy. I was sick during chemo, felt better during radiation

bigbrother · April 2015

I think my sister is confused too. I wish she would let me look at the reports she gets or talk to her doctors but she won't. She's going through this all alone and I know it's a lot of information to process. I haven't been able to get any more info out of her. All she said is that she's going to do more vitamin C.

I'm not even sure if it's an MRI they just did, after her surgery and chemo. It might have been a PET scan, she's confused them before. Would a PET scan AFTER surgery and chemo make more sense?

wrenn · April 2015

Have you spoken to her specifically about your concerns or just leaving what is shared up to her? I would tell her that you are worried because the information isn't clear to you and that you would like to understand it better. Assure her that you will respect her decisions (she might be holding off giving information in case she is judged or pressured to do something she doesn't want to do). I think having an honest talk with her about everything while letting her know you won't interfere and that you intend to support her might make her open up more. Also you can let her know that you will be there to listen if she has any fears or wants to talk about her vitamin C use of anything else she chooses. Good luck. She is lucky to have you.

cookiegal · April 2015

it sounds like a patient navigator could be really helpful...if your sister will all one to discuss the case with yo

bigbrother · April 2015

What is a patient navigator?

Yes, I've shared my concerns with her. That's all good advice and I think I've done a pretty good job at letting her know I'm here for support not to interfere, I trust her choices, etc.

My worry now is that she's not on top of her treatment. The things she's saying don't add up. I'm just trying to get a sense of what's a NORMAL post-treatment course of action.

I know every case is different but if y'all are telling me that MRIs and PET scans are NOT done every time in this situation, then I'm getting even more worried. Because that's what my sister is telling me, that everyone who has surgery and chemo (in that order) always has a scan afterwards that 90% of the time they find more cancer.

cookiegal · April 2015

some cancer centers have people called nurse navigators,patient navigators, patient reps. They can probably talk on the phone or in person. It sounds like there may have been some wires crossed..

ElaineTherese · April 2015

big brother,

I did get an MRI and a PET scan after chemo, but that was because I had neoadjuvant chemo and my physicians wanted to see how much cancer (if any) was left afterwards so they could plan my surgery. Yes, that 90% figure seems highly suspicious. I know that your sister turned down radiation. Do you know if she is doing hormonal therapy (HT)? Typically, that just means taking a pill every day. In many cases, hormonal therapy is helpful because many tumors feed off of estrogen and HT reduces the amount of estrogen in your body.

wrenn · April 2015

It's possible that your sister has decided to not do further "conventional" treatment and is not telling you in case you try to talk her out of it. If that is the case she needs to know you are behind her no matter what she chooses for herself. If it is that she is misinformed about her diagnosis then you can ask her to have it clarified and see what her response is. It seems to me since she mentioned the vitamin C that she has explored alternative treatments and is not comfortable sharing that.

annieb4 · April 2015

Big brother,

I had a PET scan after my treatments were over, and now I have CT scans. as a matter of fact I just had one last Thursday. So yes, scans after are normal, depending on what your doctor wants and what insurance will pay for.

After being diagnosed you get A LOT of information thrown at you and it is extremely hard to keep it all straight. You just have so much on your mind. I had my daughters who came to my appointments and took notes and asked question. I still get confused on things and have to ask one of them. I applaud being strong and standing up to cancer, but this is something that is just so much easier if you have someone to help.

bigbrother · April 2015

I wish my sister would let me be the person to help her. I know it's a lot of information. It's true, she may have decided not to do any more treatment. They wanted to do surgery on both sides, she did one. They wanted to do 6-8 rounds of chemo, she did 4. They wanted to do radiation, she decided not to. So maybe your right and she has decided to stop treatment and not tell me.

I'll call her hospital to see if there's a navigator there who can help me help my sister. Thanks for all the feedback.

Redporchlady · April 2015

Good luck bigbrother and sorry that this is so challenging. Every ONC has a different treatment plan and it depends on your staging, size and type of cancer. I had chemo for 5 months and they did an MRI at the end and showed I was cancer free. The axilla ultrasound showed suspicion in my lymph nodes yes so they told me likely I may have some positive lymph nodes. I had surgery and ended up all 20 lymph nodes were negative and all dead tissue in the breast. 5 of the lymph nodes were treatment effected which means they had cancer but the chemo completely killed them.

I hope it's okay to post here

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