not sure about treatment recommendations, please help!

SPF

Hello Everyone,

I've just been recently diagnosed with Stage IV breast cancer. I just started radiation on one area of my body (so there is no systemic treatment right now). I know that I am ER, PR and HER-2 positive. The doctor doesn't want to do anything else until after the radiation is complete (another 3 weeks). I'm having a hard time understanding why he doesn't want to do anything else. I've been told by other oncologists that you can do hormonal therapy while on radiation and studies show there's no difference between those who start while on radiation and those who wait. I don't know whether you can do herception (sp?) while on radiation. I have difficulty waiting because I don't want things to spread and get worse. Any thoughts? I am seeing someone who is regarded as one of the best oncologists in the country, so I'm assuming he knows what he's doing. I need some reassurance.

Thanks everyone,
SPF

Wolfi

Listen to your gut
SPF,

I only have Stage III but am currently in radiation. I can understand your concern if you have heard by other oncologists that you can do hormonal therapy while on radiation, but if the oncologist you are seeing is regarded as one of the best in the country you are probably getting the correct treatment for your case. If I were you I would ask your oncologist WHY he doesn't want to do anything else until radiation is done. Keep asking him questions until you understand the whole situation. There may be some slight difference in your specific condition that would make him chose to do that or maybe he just doesn't want your body to have to deal with too many treatments at once because of immune or fatigue issues. I'm sure that you don't have to worry about your bc spreading if your radiation is only 3 weeks long. If your oncologist thought that was a possibility your treatment plan would be different.

After you talk to him if you still don't feel comfortable, ask for a second opinion. It never hurts to ask and you need to be an informed patient - it is your life.

I hope this helps. Good luck and take care.

SPF

Wolfi said:

Listen to your gut
SPF,

I only have Stage III but am currently in radiation. I can understand your concern if you have heard by other oncologists that you can do hormonal therapy while on radiation, but if the oncologist you are seeing is regarded as one of the best in the country you are probably getting the correct treatment for your case. If I were you I would ask your oncologist WHY he doesn't want to do anything else until radiation is done. Keep asking him questions until you understand the whole situation. There may be some slight difference in your specific condition that would make him chose to do that or maybe he just doesn't want your body to have to deal with too many treatments at once because of immune or fatigue issues. I'm sure that you don't have to worry about your bc spreading if your radiation is only 3 weeks long. If your oncologist thought that was a possibility your treatment plan would be different.

After you talk to him if you still don't feel comfortable, ask for a second opinion. It never hurts to ask and you need to be an informed patient - it is your life.

I hope this helps. Good luck and take care.

Thank you!
Thank you so much Wolfie! I called the doctor's nurse this afternoon and asked her for some additional explanation as to why we are waiting. I totally understand not wanting the body to deal with too many treatments at once. My radiology onco made the same point in a difference context. I tend to ask a lot of questions, but historically I am always worried that I am "bugging" people. I don't want to piss off the people that are giving my care. Any suggestions for etiquette/frequency of contacting the doctor's office? I am very polite and thankful when I call.

What is your story? Where are you at on this journey?

Thanks again!

rjjj

SPF said:

Thank you!
Thank you so much Wolfie! I called the doctor's nurse this afternoon and asked her for some additional explanation as to why we are waiting. I totally understand not wanting the body to deal with too many treatments at once. My radiology onco made the same point in a difference context. I tend to ask a lot of questions, but historically I am always worried that I am "bugging" people. I don't want to piss off the people that are giving my care. Any suggestions for etiquette/frequency of contacting the doctor's office? I am very polite and thankful when I call.

What is your story? Where are you at on this journey?

Thanks again!

Hi SPF
welcome to our board. I think you are just looking out after your best interests.. and if any one thinks you are "bugging them" that is there fault. You deserve answers and the best of care, bug them all you want!

I had chemo first and then radiation for stage 3a I had Herceptin with both. Let us know how you are doing, my best to you.
hugs, Jackie

Wolfi

SPF said:

Thank you!
Thank you so much Wolfie! I called the doctor's nurse this afternoon and asked her for some additional explanation as to why we are waiting. I totally understand not wanting the body to deal with too many treatments at once. My radiology onco made the same point in a difference context. I tend to ask a lot of questions, but historically I am always worried that I am "bugging" people. I don't want to piss off the people that are giving my care. Any suggestions for etiquette/frequency of contacting the doctor's office? I am very polite and thankful when I call.

What is your story? Where are you at on this journey?

Thanks again!

I understand about worrying
I understand about worrying that you are bugging people with questions - I'm the same way. One thing that bc has taught me is that I am the only one who can look out for me. I can't rely on my husband or friends to know what I'm dealing with or worried about. I have to talk about how I feel, ask questions until I'm comfortable with the answers, and do whatever I can to get through all the treatments. I once told my surgeon that I was tired of seeing him and I didn't like him anymore. I was kidding, of course, but every time I talked to him he gave me more bad news.

My very first mamo was in May. Second mamo was in June because of "problem areas". In June I had a core biopsy and was diagnosed with Stage I DCIS. They did a lumpectomy in July and the margins (which were not clear) ended up being Stage III. In August I had a bilateral mastectomy with a .1 mm clear margin. My oncologist wasn't happy with the margin and said I could 1. do nothing and hope it didn't come back 2. have another surgery to remove some of my chest muscle or 3. have radiation and 5 years of Tamoxifen. I chose #3 and have had three radiation treatments so far.

I called the nurses quite often (sometimes a few times per week) before and after my surgeries because I had continuous questions and concerns. The more I read (mostly on this forum) the more questions I had. You have the right to be an informed patient. I found that my stress level went down when I understood more about what they were doing and why. Keep asking questions and everything will be fine.

Good luck!

SPF

Wolfi said:

I understand about worrying
I understand about worrying that you are bugging people with questions - I'm the same way. One thing that bc has taught me is that I am the only one who can look out for me. I can't rely on my husband or friends to know what I'm dealing with or worried about. I have to talk about how I feel, ask questions until I'm comfortable with the answers, and do whatever I can to get through all the treatments. I once told my surgeon that I was tired of seeing him and I didn't like him anymore. I was kidding, of course, but every time I talked to him he gave me more bad news.

My very first mamo was in May. Second mamo was in June because of "problem areas". In June I had a core biopsy and was diagnosed with Stage I DCIS. They did a lumpectomy in July and the margins (which were not clear) ended up being Stage III. In August I had a bilateral mastectomy with a .1 mm clear margin. My oncologist wasn't happy with the margin and said I could 1. do nothing and hope it didn't come back 2. have another surgery to remove some of my chest muscle or 3. have radiation and 5 years of Tamoxifen. I chose #3 and have had three radiation treatments so far.

I called the nurses quite often (sometimes a few times per week) before and after my surgeries because I had continuous questions and concerns. The more I read (mostly on this forum) the more questions I had. You have the right to be an informed patient. I found that my stress level went down when I understood more about what they were doing and why. Keep asking questions and everything will be fine.

Good luck!

Thank you so much for the warm welcome Jackie. I really appreciate it. Where are you at in this journey?

I know what you mean Wolfie. I have found myself becoming more assertive and trying to get rid of that "bugging people" concern. My partner continuously tells me that I have to feel comfortable with the treatment. I know in my gut that I am not too concerned about waiting, but I do want to know the rationale behind it. I know that I feel much better when I simply understand what is going on. Hopefully the nurse will get back with me soon. It sounds like you are also fairly new to BC. I have to admit since I am so new to this, I'm not sure what to say. My thoughts and prayers are with you, and I will do my best to encourage you as you have done for me.

meena1

Hi, and welcome to this
Hi, and welcome to this site. I was diagnosed last July with stage 4 cancer, I had mets to my spine and liver. My pet scan last month shows no activity, so I can breath for a while. Where did your cancer spread to? I am also Her2 positive, and I received herceptin treatment along with my chemo and radiation. So, they can give you Herceptin if you are on radiation, however, every case is different, and sometimes we all do not receive the same treatment. Also, the fear is worse than the actual cancer! I felt like you do, I just wanted them to start doing something and I felt like they were taking forever. But I am doing very well now, so if your oncologist is one of the best in the country, i believe you should trust him. Where are you going for treatment? Take Care

Akiss4me

Wolfi said:

Listen to your gut
SPF,

I only have Stage III but am currently in radiation. I can understand your concern if you have heard by other oncologists that you can do hormonal therapy while on radiation, but if the oncologist you are seeing is regarded as one of the best in the country you are probably getting the correct treatment for your case. If I were you I would ask your oncologist WHY he doesn't want to do anything else until radiation is done. Keep asking him questions until you understand the whole situation. There may be some slight difference in your specific condition that would make him chose to do that or maybe he just doesn't want your body to have to deal with too many treatments at once because of immune or fatigue issues. I'm sure that you don't have to worry about your bc spreading if your radiation is only 3 weeks long. If your oncologist thought that was a possibility your treatment plan would be different.

After you talk to him if you still don't feel comfortable, ask for a second opinion. It never hurts to ask and you need to be an informed patient - it is your life.

I hope this helps. Good luck and take care.

Welcome SPF
Wow...Wolfi explained it so well. We all pretty much have a lot of the same treatments but tailored to our specific needs, which are never identical. I am thankful for that since we always want the best care. You are no doubt in great hands. Welcome and please keep us posted. We are here 24/7 and will more than share with you as well as walk with you in your journey! ♥Pammy

TraciInLA

meena1 said:

Hi, and welcome to this
Hi, and welcome to this site. I was diagnosed last July with stage 4 cancer, I had mets to my spine and liver. My pet scan last month shows no activity, so I can breath for a while. Where did your cancer spread to? I am also Her2 positive, and I received herceptin treatment along with my chemo and radiation. So, they can give you Herceptin if you are on radiation, however, every case is different, and sometimes we all do not receive the same treatment. Also, the fear is worse than the actual cancer! I felt like you do, I just wanted them to start doing something and I felt like they were taking forever. But I am doing very well now, so if your oncologist is one of the best in the country, i believe you should trust him. Where are you going for treatment? Take Care

Welcome, SPF
My diagnosis and treatment are very different from yours, so I don't have any practical input for you, but I wanted to share something that made me feel better about "bugging" my oncologist's office:

At the very beginning of this journey, my primary care physician was explaining to me why I would be seeing my oncologist for pretty much everything for the next few months, and he said, "Because, when you're going through cancer treatment, it's normal to think, every time you burp, that it's a cancer burp."

So I try to remember that my oncologist has lots of patients, some with really horrible forms of cancer, and probably gets calls in the middle of the night from some poor, frightened person who's just burped, and thinks it's a "cancer burp." And probably other patients who are so stressed out and overwhelmed that they're not very polite when they call.

So I just try to brighten their day a little when I call, I try to remember the names of the various receptionists and schedulers and nurses, ask them how they're doing, have some empathy for how hard it must be to work with cancer patients all day long -- and then I don't feel so much like I'm being a "pest."

I know, I know -- just call me Pollyanna -- but it works for me!

Traci

Christmas Girl

As I have written many times on this board...
It is of utmost importance to feel confident in and comfortable with your medical team when dealing with a complicated and serious disease, like breast cancer.

And, modern medicine offers treatments that should be tailored specifically to each individual patient, based on unique variables.

Even with a similar stage... tumor size... lymph node involvement... etc. ... Never, ever compare yourself directly to another. As my own med onc told me, upfront and many years ago: "No 'cookie-cutter' treatment."

kat_harina

You have a patient right for a second opinion
Hi SPF-

I am a 3 1/2 year survivor of BC, and I just recently registered to this site again. You do have the right to a second and third and forth opinion. Don't just take the word of one doctor, asked many. We did (my husband and I), and I refused to be operated at the clinic I was diagnosed and went to the Mayo Clinic instead for a second opinion. There I felt good, and they operated on me and I had 30 radiation treatments as well.

It is your body, and you need to feel ok with your treatment.

You are in my prayers, SPF. I know it's scary at the beginning; I was sad and scared, but had my husband to catch me when I felt like falling.

From the heart,

Kat

SPF

kat_harina said:

You have a patient right for a second opinion
Hi SPF-

I am a 3 1/2 year survivor of BC, and I just recently registered to this site again. You do have the right to a second and third and forth opinion. Don't just take the word of one doctor, asked many. We did (my husband and I), and I refused to be operated at the clinic I was diagnosed and went to the Mayo Clinic instead for a second opinion. There I felt good, and they operated on me and I had 30 radiation treatments as well.

It is your body, and you need to feel ok with your treatment.

You are in my prayers, SPF. I know it's scary at the beginning; I was sad and scared, but had my husband to catch me when I felt like falling.

From the heart,

Kat

I love you all and am very grateful!
Wow! Such a wonderful and supportive group of people! Thank you so much for your incredible feedback, stories, and welcomes. I sincerely appreciate it. I've said it before, and I'll say it again: This is one of the only internet places I've visited that did not scare the crap out of me! Thank you so much everyone! I am seeing a doctor at the Indiana University Cancer Center. He was recommended by several folks in and out of state. I heard back from the nurse who said the doctor didn't want to start anything else while I was doing radiation becuase he didn't want to exaggerate the side effects. I can certainly understand that. I just talked to my uncle last night about asking his cousin who is an oncologist for a second opinion. So, it's ok to "shop around a little"? I just don't know how quickly this stuff "spreads." The recommendation about being polite and learning the names of the nurses and the receptionists makes so much sense! I certainly see your point.

Thank you so much again everyone for the wonderful support, welcome, and thoughts! I sincerely appreciate it. Please let me know if I can do anything to return the well wishes!