Decisions, decisions, Help
I know with IBC your suppose to always have Rads. After my surgery my pathology came back clean ( NED ) My Dr declared me cancer free. So what I am wondering about is what is higher my chances of getting lung cancer from rads? Or My chances of not having this cancer come back again because of rads. I am torn for what to do. I want to live as long as possible 90 would be great. I just don't know what to do. How many of us have developed lung cancer from the rads? I guess there is no way of knowing if your cancer didn't come back because of rads when it was completely gone after chemo a surgery. I hate this monster. Thanks every one for letting me rant. KAY
Comments
-
Hi Kay... I can only speak
Hi Kay... I can only speak on behalf of my personal decision and experience. I too was terrified of the side effects of radiation. Having said that, I did a lot of research on the topic and found that the risk of developing lung cancer from radiation to the breast is significantly lower in recent years due to advances with the equipment allowing more specific targeting of the radiation. I chose to go ahead with the radiation... it is exhausting, but doable. For me it was a matter of weighing the risk vs. the benefit. The statistics (only numbers I know) but the rate of recurance is shown to be higher for those who pass on the radiation treatment. I wanted to give myself the best chances possible. I wish you the best of luck in reaching a decision that is right for you. Not an easy choice to make I know...
Hugs,
~T0 -
I want to do as much as I can
to fight this beast. I am stage 1C, Triple negative. I have had 2 lumpectomies (to get clear margins) and 5 of 6 rounds of Chemo. I was told that I needed 33 rads....being a triple negative, there is nothing else to treat with. So I want to use every available treatment now--I don't want to have to do this again if at all possible. My onc said I could skip the last 2 chemos--that they were the icing on the cake, but I said--bring it on. And I hope that after the rads, this will close a chapter in my life that I don't want to relive. For me, I think that having rads will decrease my chances of recurrence from about 25% to maybe 17%. My onc said without treatment, my chances were 33%.
Maybe if your onc can give you some statistics it will help you with your decision.
Good luck,
JoAnn0 -
Rads
Big decision here too. Just finished #4 Chemo, Hooray, done with that. Regrouping and then meeting Radiologist to discuss rads to start in January. First interview he said that there would be 33 treatments. My Oncotype test put me in the intermediate bracket which meant Chemo was necessary. When talking with my Radiologist will ask him about the chances of radiation tratments causing cancer in other parts of the body. My Lumpectomy healed just wonderfully, small area, small incision. If there is a way to direct the radiation treatments to this sight specifically that would make me feel a lot better. Don't want to take any short cuts now, believe the worst is over. Making a list of questions for him and will use the info from your post.0 -
Oh Kayjoannstar said:I want to do as much as I can
to fight this beast. I am stage 1C, Triple negative. I have had 2 lumpectomies (to get clear margins) and 5 of 6 rounds of Chemo. I was told that I needed 33 rads....being a triple negative, there is nothing else to treat with. So I want to use every available treatment now--I don't want to have to do this again if at all possible. My onc said I could skip the last 2 chemos--that they were the icing on the cake, but I said--bring it on. And I hope that after the rads, this will close a chapter in my life that I don't want to relive. For me, I think that having rads will decrease my chances of recurrence from about 25% to maybe 17%. My onc said without treatment, my chances were 33%.
Maybe if your onc can give you some statistics it will help you with your decision.
Good luck,
JoAnn
I am so sorry to hear this.
Wish I had something wise to tell but I don't.
All I can do is send you HUGE HUGS.
Please keep us up dated.0 -
Decisions
Hi, Kay, how frustrating to have the rad machine breaking down. That would not inspire confidence although I know it happens everywhere; I remember it happening to me for the last 3 treatments. Very frustrating.
Not to mention the decisions we are faced with. It seemed as if I was faced with important, seeming-life-or-death decisions at every turn. For me, though, radiation was not in question. I had triple negative cancer, and chemo/rads are all there is as far as standard treatment. Honestly, I also am of the understanding that IBC like TN is aggressive enough that mets are a higher risk than a separate cancer due to radiation.
My radiation oncologist discussed in detail and gave me a written breakdown of what my risks, percentage-wise, were for each radiation side effect, or late side effect. Your rad onc. should be able to do the same. Those percentages vs. your risk of IBC mets should help you decide and give you peace of mind in your decision.
Whatever you decide, you are doing the best you can, and that is all you can ask of yourself.0 -
Thanks Ladies, I will do
Thanks Ladies, I will do some research on it. I am E-,P+ So I am not triple neg. I did have a complete response to chemo. My cancer is completely gone. I see allot of the recurrence come back in the lungs. Is it recurrence or from rads??
JoAnn, were your percentages for life or for 5 years?? Did you have Inflammatory breast cancer? I am on Herceptin for a year which I will finish. And then I will be on Arimidex for 5 years. I'm not saying I am going to stop rads. I just have questions and want to make sure I do the best thing for me. Thank you all for you advise and help I appreciate it allot.0 -
Hi Moopy, I think that isMoopy23 said:Decisions
Hi, Kay, how frustrating to have the rad machine breaking down. That would not inspire confidence although I know it happens everywhere; I remember it happening to me for the last 3 treatments. Very frustrating.
Not to mention the decisions we are faced with. It seemed as if I was faced with important, seeming-life-or-death decisions at every turn. For me, though, radiation was not in question. I had triple negative cancer, and chemo/rads are all there is as far as standard treatment. Honestly, I also am of the understanding that IBC like TN is aggressive enough that mets are a higher risk than a separate cancer due to radiation.
My radiation oncologist discussed in detail and gave me a written breakdown of what my risks, percentage-wise, were for each radiation side effect, or late side effect. Your rad onc. should be able to do the same. Those percentages vs. your risk of IBC mets should help you decide and give you peace of mind in your decision.
Whatever you decide, you are doing the best you can, and that is all you can ask of yourself.
Hi Moopy, I think that is one of the problems I don't have the confidence in my radiation Oncologist. I may have to change Dr's. This Dr is new right out of school. And I, be it right or wrong am of the thinking that this is my life I want experience. I want my Dr to be able to answer my questions with out giggling and tripping over their tongue. That does not inspire me to trust there treatment suggestions. I hate to talk bad about any one but jeez Radiation is not going very well so fare. I guess I need to vent a little LOL Sorry.0 -
Kay, I think you're doingsmalldoggroomer said:Thanks Ladies, I will do
Thanks Ladies, I will do some research on it. I am E-,P+ So I am not triple neg. I did have a complete response to chemo. My cancer is completely gone. I see allot of the recurrence come back in the lungs. Is it recurrence or from rads??
JoAnn, were your percentages for life or for 5 years?? Did you have Inflammatory breast cancer? I am on Herceptin for a year which I will finish. And then I will be on Arimidex for 5 years. I'm not saying I am going to stop rads. I just have questions and want to make sure I do the best thing for me. Thank you all for you advise and help I appreciate it allot.
Kay, I think you're doing all the right things. Of course radiation is scary and comes with risks. But you're dealing with your fears by talking to your docs, talking with us, and doing the research. Those are all good things that will help guide you and give you some peace of mind. Because you're doing all that, I'm sure that what you decide will be right for you.
I wish I had more specific advice for you, but I am sending my thoughts and prayers.
Take care,
Linda0 -
Kay
I have many of the same concerns as you. I had bilateral mastectomy first then chemo and I start rads in January (5 weeks). Because my mastectomy was my 12th surgery in 4 years you can imagine how many CT scans, MRIs and Xrays I have had. I do worry that radiation might cause another problem that I don't want to deal with. Sorry your machine keeps breaking down. I have my CT scan next week and mapping. Let us know what your dr says.
{{hugs}} Char0 -
I did lots or research.cahjah75 said:Kay
I have many of the same concerns as you. I had bilateral mastectomy first then chemo and I start rads in January (5 weeks). Because my mastectomy was my 12th surgery in 4 years you can imagine how many CT scans, MRIs and Xrays I have had. I do worry that radiation might cause another problem that I don't want to deal with. Sorry your machine keeps breaking down. I have my CT scan next week and mapping. Let us know what your dr says.
{{hugs}} Char
After all my research, it is a gamble no matter what treatment we choose. BC is still a mystery and we all respond to treatments differently. I had radiation but not chemo. My OncoTypeDX came back 18 (low is 16). It would have improved my chances by 3% Hard decision but went with radiation only. Who knows.
Roseann0 -
I feel with this it isJean 0609 said:Hi Kay,
I didn't have to do radiation, so I can't help you there. Just wanted to let you know that we are here for your ranting! It always helps to get it off your chest. Have a Merry Christmas. Hugs, Jean
I feel with this it is stealing form Peter to pay Paul. I do worry about the side effects too. But I also worry about getting a cancer recurrence. I have basically had whole chest radiation. The left side in 1995. So far so good, Hope this helps.0 -
Like Linda Wrotesmalldoggroomer said:Hi Moopy, I think that is
Hi Moopy, I think that is one of the problems I don't have the confidence in my radiation Oncologist. I may have to change Dr's. This Dr is new right out of school. And I, be it right or wrong am of the thinking that this is my life I want experience. I want my Dr to be able to answer my questions with out giggling and tripping over their tongue. That does not inspire me to trust there treatment suggestions. I hate to talk bad about any one but jeez Radiation is not going very well so fare. I guess I need to vent a little LOL Sorry.
No "sorry" allowed. Where better to vent about this bc stuff than here? Besides, as Linda wrote, you are doing all the right things. Questioning is good.
Your doctor should be able to answer your questions and inspire your confidence. You wouldn't be the first to change doctors, so don't worry about that. It's your life, you're the one getting the radiation; you get to choose--and feel you've made the best decision you could. Then you can move forward with your life and all the experiences waiting for you.0 -
Kay
This isn't addressing your specific question, but maybe it'll be more information for you. I always say 'google' it.
Here's a website specific to IBC: http://www.ibcresearch.org/ Lots of links on this site.
I know how it is to wonder if you're doing the right thing. I have to say, each of the doctors I've met have not been able to give me direct links to evidence of studies, etc. I have had to find them out myself. I say thank goodness for the internet! I hate to think what it would have been like had I faced this 50 years ago.
Get this... it took me 5 months to find a website about a study of my specific cancer, from a University in Texas. I was looking up info on each of the pathology indicators I had, and finally found a clinical study which explained how my type of cancer responded to either chemotherapy or aromatase inhibitors. I am a very detailed kind of person, and that was more of a help to me than the 15 minute doctor visits I get which always leave me skeptical.0 -
I believe it was for 5 yearssmalldoggroomer said:Thanks Ladies, I will do
Thanks Ladies, I will do some research on it. I am E-,P+ So I am not triple neg. I did have a complete response to chemo. My cancer is completely gone. I see allot of the recurrence come back in the lungs. Is it recurrence or from rads??
JoAnn, were your percentages for life or for 5 years?? Did you have Inflammatory breast cancer? I am on Herceptin for a year which I will finish. And then I will be on Arimidex for 5 years. I'm not saying I am going to stop rads. I just have questions and want to make sure I do the best thing for me. Thank you all for you advise and help I appreciate it allot.
From what my onc said (that I understood--having had to ask him more than once because my mind seems to shut down when he talks sometimes), if I get to 5 years without recurrence, then my stats are like everyone else's and that that was how we could tell if the chemo worked. I have invasive breast cancer but not inflammatory. This was not what I wanted to hear, but he was being truthful, that there are no guarentees. I really trust my onc--he has been terrific throughout all of this. Because of the Triple Negative, after rads, I'll be done with treatment other than my checkups. This is why I'll get the rads--no other options or treatment is currently available to me.
Good luck in your decision--if you need to get a 2nd or 3rd opinion.
Hugs to you,
JoAnn0 -
Thank you so much Kathy, IKathyLQ said:Kay
This isn't addressing your specific question, but maybe it'll be more information for you. I always say 'google' it.
Here's a website specific to IBC: http://www.ibcresearch.org/ Lots of links on this site.
I know how it is to wonder if you're doing the right thing. I have to say, each of the doctors I've met have not been able to give me direct links to evidence of studies, etc. I have had to find them out myself. I say thank goodness for the internet! I hate to think what it would have been like had I faced this 50 years ago.
Get this... it took me 5 months to find a website about a study of my specific cancer, from a University in Texas. I was looking up info on each of the pathology indicators I had, and finally found a clinical study which explained how my type of cancer responded to either chemotherapy or aromatase inhibitors. I am a very detailed kind of person, and that was more of a help to me than the 15 minute doctor visits I get which always leave me skeptical.
Thank you so much Kathy, I will check it out. There isn't very much out there on IBC. Thanks again this is very helpful. Take care Kay, Merry Christmas!!0 -
First off you are not cancer
First off you are not cancer free. There is no such thing. At this time like many of us there is No Evidence of Disease. They say everyone probly has a cancer cell floating around but one won't hurt you. It is when they start multiplying that you have a problem.
On the rads I don't know if you can do a search on the web and find any info. We have to make hard decision on our treatments and like you said we never know. All you can do is what feels right to you but don't let fear make a decision for you.0 -
sweetvickidsweetvickid said:First off you are not cancer
First off you are not cancer free. There is no such thing. At this time like many of us there is No Evidence of Disease. They say everyone probly has a cancer cell floating around but one won't hurt you. It is when they start multiplying that you have a problem.
On the rads I don't know if you can do a search on the web and find any info. We have to make hard decision on our treatments and like you said we never know. All you can do is what feels right to you but don't let fear make a decision for you.
Thanks so much, and Merry Christmas to you too.0 -
don't worry
I had 30 treatments and it all went very smoothly. I was able to work for the entire time. I really never questioned the need for radiation, as the info I had gotten on IBC scared me so bad that I just wanted to be at war with this stuff. I had very little skin deterioration, in fact almost none. The check up after my last treatment was so good that the radiologist congratulated me and said that I made this whole thing look easy. I've had some dry skin and I had a small place in my incision that oozed due to the vibrations of the radiation. That seeped fluid during the whole time, but it was almost completely over by the time the treatments were done. Lately, I've had some very dark brown skin that I was able to remove in the shower and new baby pink skin underneath. The pet scan on Dec 1 showed that I was all clear. Yay!!
You mentioned that you have had some lower back upper thigh pain after your tch. That is how mine started too. I'm thinking maybe the foot drop might be due to a knee injury, and I am so hoping and praying this is true. Don't want Lou Gehrigs!! So good to have someone to talk to about this stuff. THANKS!0 -
Thank you criptupnana, Icriptupnana said:don't worry
I had 30 treatments and it all went very smoothly. I was able to work for the entire time. I really never questioned the need for radiation, as the info I had gotten on IBC scared me so bad that I just wanted to be at war with this stuff. I had very little skin deterioration, in fact almost none. The check up after my last treatment was so good that the radiologist congratulated me and said that I made this whole thing look easy. I've had some dry skin and I had a small place in my incision that oozed due to the vibrations of the radiation. That seeped fluid during the whole time, but it was almost completely over by the time the treatments were done. Lately, I've had some very dark brown skin that I was able to remove in the shower and new baby pink skin underneath. The pet scan on Dec 1 showed that I was all clear. Yay!!
You mentioned that you have had some lower back upper thigh pain after your tch. That is how mine started too. I'm thinking maybe the foot drop might be due to a knee injury, and I am so hoping and praying this is true. Don't want Lou Gehrigs!! So good to have someone to talk to about this stuff. THANKS!
Thank you criptupnana, I haven't had any skin problems yet but I am only 4 treatments in. I sure wish you all the best, and pray you don't have Lou Gehrig's. I'm sure it is just related to all the treatments and arthritis. All my best Take care Kay,0
Discussion Boards
- All Discussion Boards
- 6 CSN Information
- 6 Welcome to CSN
- 121.2K Cancer specific
- 2.8K Anal Cancer
- 440 Bladder Cancer
- 306 Bone Cancers
- 1.6K Brain Cancer
- 28.4K Breast Cancer
- 391 Childhood Cancers
- 27.9K Colorectal Cancer
- 4.6K Esophageal Cancer
- 1.2K Gynecological Cancers (other than ovarian and uterine)
- 12.9K Head and Neck Cancer
- 6.3K Kidney Cancer
- 666 Leukemia
- 789 Liver Cancer
- 4.1K Lung Cancer
- 5.1K Lymphoma (Hodgkin and Non-Hodgkin)
- 235 Multiple Myeloma
- 7.1K Ovarian Cancer
- 53 Pancreatic Cancer
- 486 Peritoneal Cancer
- 5.3K Prostate Cancer
- 1.2K Rare and Other Cancers
- 532 Sarcoma
- 718 Skin Cancer
- 647 Stomach Cancer
- 190 Testicular Cancer
- 1.5K Thyroid Cancer
- 5.8K Uterine/Endometrial Cancer
- 6.3K Lifestyle Discussion Boards