why both chemo and rad.?

KarenKL

I seen my general surgeon the other day and she said she was going to suggest to my Oncologist that I should have radiation and chemo. for an extra reassurance. Now I thought chemo was the strongest thing against cancer. Why do both? I don't feel I should do both. They don't even know if the cancer got past the lymph node in the breast. It was only found in one. If I am going to do the chemo, feel sick, loose my hair and all the other nasty stuff that comes with it then what makes them think I want radiation that will leave me extra sick and sores all over my body. My brother in law did radiation and he has sores everywhere and it looks gross. Plus I couldn't have my expander filled yet because the skin is to tight still. This is all really starting to suck and I am getting tired of just that. My surgeon also gave me a perscription to get the prosthesis bras. I haven't went yet. The one I seen wasn't very promising. It felt like I would have pain from them being so heavy. I am sorry if it sounds like I complain alot, but I do. LOL!
So if anyone can explain why both are needed to make me see that yeah I do need both, if not then I am NOT doing both. Dr.s can't do what they want it is what I want. And after some of the crap I have been through in the past I don't let anyone make my decisions. Thanks all. Karen

wimpy

Hi Karen

I can really understand your not wanting to do the chemotherapy and the radiation, one alone is scary without contemplating having to do both. I asked the same question when it came up for me and my oncologist told me that the two therapies actually accomplish two different things. According to him the chemotherapy is to catch any cancer cells that have potentially migrated to another location in the body. The radiation therapy is concentrated at the source of the original cancer to kill all remaining cancer cells at the source. He told me that he recommended both because in the majority of cases a recurrence usually occurs with in cms of the original tumor site. I trusted him and did both therapies in the end but you have to decide what is right for you. Radiation didn't cause me to have severe burns or sores, or really any lasting side effects to speak of but I don't know whether I was just lucky. Hopefully others will answer and provide more information.

lindatn

There is no right or wrong answers to your questions. Size of tumor, location, your age, ,and many many other things figure into the treatment. Radiation is probably necessary after a lumpectomy in your case maybe not. I was told at one point if I had a mastectomy and all nodes were negative no radiation would be necessary. I went with a lumpectomy and radiation, had postive nodes anyhow so would of had radiation in any case. Will you be taking tamoxifen? It sounds to me like you need to take all your records and go see a couple more cancer centers so you feel right about the treatment before you go ahead. The only thing I think we all will tell you who have had radiation is you won't have sores all over your body. Go for more advice. The surgeon said I would benefit from Taxol and on more studying and talking to the onoc she said not the case. I had A/C, then surgery, radiation and tamoxifen. I'm still questioning the Tamoxifen, may quit. We do in the end make our decisions but make a educated one. God Bless Linda

krisrey

Hi Karen,
I agree with the others, there are a lot of things that factor into different therapy's. I for one chose to do everything they offered, especially because of my one positive node.
Both chemo and radiation are no fun and I don't know what kind of radiation your your bother in law recieved but I had no problems with radtion. The only draw back was having to get up and get myself out the door every morning to be there for 7 am. I had to go early so I could still get home to get my kids ready for school. Radiation is really a piece of cake, 15 minutes tops. The hardest part was the first appt were they do the tatoo's, you have to lay motionless with your effected arm in one position for a really long time. I had no lasting side effects and did not burn or get any sores at all.
Also chemo is made to kill any cells that potentially have escaped in your body, where as radiation is going right to the source. Chemo is definately no fun, losing the hair, feeling sick and tired, but I am here to say that it is doable. They have lots of nausea meds and many women to pretty well.
What was your dx, how big was your tumor, whats you HER2 status, and ER/PR status?
Kris

DiO

HI Karen! Can't add too much to the above responses except to say the onc is the one who will ultimately help you decide what's right for you after surgery, so keep an open mind until you talk to him/her. Also chemo sucks but is doable--for me was worth the discomfort for the assurance I was doing all I could (I also had one positive node). Radiation after chemo was a breeze! Very little redness/rash toward the end of treatment, none of the fatigue some experience--after chemo it just felt good to feel good! Was able to go back to work during radiation after taking some time off during chemo. So by all means educate yourself, then decide with the docs what's best for you--if it's chemo and rads you can do it! Many of us have been there and are here to talk about it!

God bless, Di

wildangel

Hi Karen,
Did I read you had a positive lymph node? All those kinds of things are part of the equation that your onc puts together to see which course of treatment is best for you. This includes size of tumor, aggressiveness, her2nue status, ER/PR status, and lymph node status.

My onc explained it to me this way. Warning- I can't spell half the stuff I am about to write!
He said that cancer is the only thing other than a pregnancy that can create its own blood supply. This is called angiogenesis. When a cancerous tumor is removed any stray cell remaining goes in search of a new blood supply to 'feed it'. Technically, it would create another tumor or recurrance once it accomplished this. CHEMO GOES AFTER THE STRAY CELLS BEFORE THEY CAN DO THIS. That is why they want you to start pretty soon after your surgery. If your stray cells are zapped by chemo then angiogenisis cannot occur so a recurrance is unlikely. Dr. Jonas Falk - I THINK that is his name- discovered this. He is out of Massachusettes General.

Now radiation is like the clean up crew. Anything in the immediate area is killed by the radiation so it too cannot go on a merry spree and take a tour through your blood stream. I just read a new statistic that women who have radiation have an overall improved survival rate of 9%. That is a pretty good stat.

Now I was on the borderline. I could have gone with or without chemo. They strongly recommended it and I went for it. I had CMF and I did NOT lose all my hair. Now I have a lot of hair and it thinned out alot. If I started out with thin hair though I still don't think I would have lost all of it.

I don't know what kind of radiation your brother had but Breast Radiation is NOTHING like that. It is in and out and you may or may not get redness or tenderness. I personally got tired from it. I never slept so well!

Karen, I am three years out and I get really scared sometimes. The ONLY thing that makes me feel better is that I know I did EVERYTHING I could to fight this. And there is a tremendous peace of mind in that.

Good luck Sweetie.

Love,
Angela

Ellison

Hi Karen, I know I am jumping in a day late. I had a lump removed from my breast. No cancer in my lympnodes. My surgeon said radiation only. My oncologist said chemo and radiation. She suggested the strongest of the treatments. I asked why. She said that they have no way to detect microschopic cancer cells in the blood. I may or may not have some. So I said ok lets get the show on the road. This month is one year since my chemo and radiation treatment. I thought that was all behind me. Not so, they are looking for bone cancer now. I will know a week from this wed. I had a bone morrow test last week. I was told that if it comes back positive I have stage 4 cancer and that the chemo treatments I had did not do me any good. They can give me more chemo and change my hormones. That was enough to ruin a girls day wouldn't you say.... So you just never know with this stuff.

Re: radiation, I was so darn scared to do radiation. My experience was not bad at all. It was a lot easier than chemo, but I got thru that too. Good luck and God bless...

inkblot

Hi Karen:

Hope you have a little time Karen because I have a lot I want to share with you here.

Different treatments are advised, as others have pointed out, based typically, on your cancer pathology. I'd advise getting a copy of that report and discussing it in detail with your doctor(s). Educate yourself regarding the path report, in advance, so you'll understand what the terms mean, etc.. You can go to www.nci.nih.gov for starters. Lots of good info there. Also, lots of great books available too with detailed info on staging and recommended treatments for different stages, etc.. All that can help you to make the best choices for yourself.

When you research treatment modalities, based upon your particular staging and you find that what's being recommended isn't matching up well, then ask your docs to justify their recommendations. Don't be shy on that one.

Most docs use the lymph node status for more accurate staging. A positive lymph node can contain anything from microcells to actual tumors in the nodes which sometimes have even become matted and entertwined with lymph vessles, nerves, etc.. You need to know the extent of your specific lymph involvement and read the full
path report for it to grasp how that relates to the recommendations you're getting.

Next thing which I think is imperative, is to get at least one additional opinion from an oncologist who is completely unassociated with your other one. Or go to a cancer treatment facility if one is near enough to you to make it an option for a 2nd opinion. If you're still not feeling confident, then get a 3rd opinion too. Can't hurt a thing and may help a lot.

My radiation experience was no big deal. I had lumpectomy and rads is the gold standard for lumpectomy. Not so with mastectomy though, so I understand your concerns about it. I got no sores anywhere on my body. I did develop a few teeny, almost microscopic, water filled blisters which itched like mad for a few days, about half way through treatment. I tried the stuff the rad. onc. gave to me but it seemed to make it worse, then tried a few other remedies and ultimately ended up increasing the amount of natural aloe I was using and it cleared right up)
I wasn't overly fatigued by the rads either. I was more fatigued by the daily trip for 7 and a half weeks! I tried to find ways to make the trips interesting and before I knew it, it was over.

But it gets more intriguing, said the lady who would wear purple! Shortly after completing chemo, my wisdom teeth (yes, till then I'd had no problems with them) began to revolt. They had to go said the hairy maxillofacial surgeon with an accent so heavy I could scarcely communicate with him. He in turn, had to consult repeatedly with my onc. since I was so soon out of chemo. Finally, got the surgery...a big ouch. After 10 days to recover it was directly on to rads. Isn't it amazing what the human body can endure in rapid succession? LOL I didn't burn much at all, even during the boost phase. About 10 days after completing rads, the dead skin had sloughed off (with a little help from me) and I slathered on the aloe and Vit. E oil for the next several months. Today, almost 3 years to the day after finishing rads, I've no discoloration, no swelling or shrinking, no pain, no discomfort. My battle weary, warrior breast looks the same size, shape and color as my healthy one except for the surgical scar. So take heart...not everyone's rad experience is going to be nightmarish or even close. I WOULDN'T be expecting to get sores all over your body by any stretch of the experience. I've never heard of that from anyone who had rads for bc before.

Chemo is a little bit different story. How you approach it is important, I think. What your attitude is and how well you're able to prepare yourself and how good you are at making deals with yourself and keeping your word to yourself.
Lots of things like that do make a difference.

Somehow, losing my hair wasn't a big deal for me.
I had thick, long, wavy and curly hair, so it wasn't ugly or something I had previously considered getting rid of. I had just always taken it for granted. Just sort of: "there it is on my head". Needless to say, one day there it wasn't anymore. When we shaved it (it was group effort)we pulled it all back and made a huge ponytail and my friend cut it off in one piece for me to keep, then came the buzzer and it was done. I actually didn't throw it out until over a year after I'd finished treatments! I didn't look at it very often but sometimes I would and I'd feel it and try to recall what it had looked like on my head. Once or twice, I even brushed it and it felt nice just to do. It was so shiney and healthy looking and I thought, wow, I'll have that right back on my head one of these days soon. And so I did. Once I made up my mind to enter the abyss of chemo, I was in a full steam ahead mode about it. So, no big deal with being bald when all was said and done.

The actual chemo wasn't a pic nic but it was no nightmare either. I didn't have to go to bed over it either. Just rested more and forced myself to eat well and continue to be active. Within 5 days after each infusion, I was feeling great and continued my gardening, bike riding, walking...everything I'd done before...just a bit of an abbreviated version on the gardening though. Once I felt good after infusion I wasn't about to stay inside.

I did catch a bug about midway through chemo though and that was really rough. Nonstop vomiting and carrying on. Fever, etc.. I couldn't even keep a sip of water down.
Once, I absolutely cried because I felt so miserable from it. After about 4 days and with treatment from docs and great care from my husband and son, I was back in the saddle, although I may have sat just a bit crooked that first day or so. Not to worry. Onward and upward and I finished the stuff and walked on air...until my wisdom teeth went berzerk that is.

You will find remedies for most of the chemo side effects. Dry eyes, use drops, watering eyes, a cold sinus mask helps. Rinse several times daily with and brush your teeth with baking soda and an extra soft toothbrush...NOT toothpaste. Stay away from large groups of people for about 10 days post infusion, till your white cells rebound. Wash your hands all the time. If you find yourself sitting about with nothing to do, wash them again! No going barefoot. Always wear something protective: socks don't do it though. Don't share handtowels with your family. Use papertowels till you're done with treatment. Water may begin to taste strange. Try homemade lemonade, etc. till you hit on what works best for you because you must drink lots and lots of fluids. Try not to drink too much sugary drinks though because the sugar in your mouth, on your tongue and in your tummy are a breeding ground for bacteria. Take acidophilus daily to repopulate your tummy's good bacteria and help limit tummy problems. Docs will give anti nausea pills and they WORK. Some women here have continued to work during chemo! Doesn't that just knock your socks off??? I think, for myself, the stress of working would have totally run my whole apple cart (plan for dealing with chemo) off the rail. I needed and benfitted from time to meditate and do Yoga, time to rest when my body said it was time and time to contemplate all that I was going through and what it was doing to me...good and bad. I had to keep all that stuff in perspective in order to manage well. My spirit needed nourishing and I had to do all this stuff for myself...things no one else can do for us really. I came through pretty well. My point is that you will too. You will instinctively find what works for you on an emotional level and get lots of help and advice from other's who've been there, with the physical effects. It' perfectly manageable.

Being angry is part of the process too. Don't hide from it. Rather just let yourself get up close and personal with it. Find expression for it. Let it run it's course. For myself, I found my angry period just as important as all the other periods I experienced in getting to accepting that yes, I have cancer and yes, I have to get these things done to my body in order to try to keep living.

Just before I got good and mad about the whole thing, I marched in to my husband one night and told him that I felt, in my case, that the surgery alone had been curative for me and that I thought I'd just not have chemo or rads. He looked at me with no expression really. All I remember him saying was: "Let's talk about this". And we did.

On an intellectual level I knew that surgery alone can be curative in some cases but the problem is that neither science nor docs can tell us if it is or will be. That's the scary part. What I really wanted was to kick something. To scream at somebody. I wanted to run away from the pathetic choices I had (the same choices all of us have) for treatment. The treatments could kill me and then what if I took chemo all for nothing? Such questions have no answers. What if it gave me a stroke or somthing I thought and there I'd be a mess. The whole thing could leave me debilitated in some way. Cause me all kinds of difficulties and still not "cure" anything. I wanted out of the box I found myself in, really badly. Made sense to me to just decide that I would likely be foregoing treatment after all since I felt so cured and all from the surgery. Made about as much sense as anything the docs could tell me about chemo and whether it would be worth it or not. Truth is, no one will ever know. (In some cases I think we survive in spite of chemo and in other cases it seems clear the people survive because of it). I even rang up my surgeon and had a phone pow wow about what he thought about my surgery having been curative. All this after I'd gotten 3 opinions about treatment recommendations from some of the best centers in the country. I still didn't like the idea of chemo. I raged on. If there was an "out" or something safer, then I was going to find it. I'd already explored complementary treatments and talked at length with my onc. about them and decided what I wanted to take during chemo. I was a little afraid, however, to rely solely upon alternative therapies because those substances are not regulated or controlled and quackery abounds. In my ticked off state of mind, I would likely run head first into the worst things around in that department, simply because I wanted an alternative to chemo badly, to up my chances of living a long, long time without all the risks. And I wanted it NOW. It was best for me to just steer clear of that one though and so I did. My final decision was to step off into that abyss of chemo. I think that's why people call us brave. We're scared half to death yet we do it anyway. Someone great once said that bravery is not the absence of fear but rather the ability to take action when almost paralyzed by it...something like that.

Truth is the chemo date was bearing down on me and I was getting a bit tired of hitting walls while trying to research every possibility under the sun, while also trying to predict my treatment outcome. No answers there either of course.

Finally, my angry bout ended and I began to concentrate on getting myself mentally and spiritually ready for the black hole I was about to enter. Still, there's something sad about the fact that medical treatment is so limited still. It's come a long way but not far enough if you ask me. As bc patients, we almost get off easier in some ways, compared to some other types of treatment. Still, chemo is chemo.

The bottom line reality is that what's available,
is what there is. We have certain choices but it's still a long walk when we're dx'd and told we need chemo and/or rads too. We can take it or leave it. Take part of it and leave the other part. Or take none of it and go a different route altogether. The good news is that whatever we decide upon, if we're informed and confident in our choices, we'll have done the right thing for us. Think about your greatest strengths and use them every way you can. If you're religious, talk with your minister or reverend. Talk with those closest to you. Not for advice but for support. Talk to yourself...a lot. Get down deep inside because that's where your answers are. Don't let anyone rush you either. There's an ideal window of about 6 weeks for beginning chemo, post surgery, so take every single day of that time, if you need it. Be patient with yourself and love yourself in the process and you'll thank yourself for it later.

Hope some of that may help in some way. If nothing else it reassures you that so many of us felt the same feelings. Those of us here who were in the same boat of chemo and/or rads, know how it feels. While we may have approached some things differently, we were still on that boat and we understand. Sometimes, just being understood feels good. Feeling understood certainly has brightened more than a few days for me!

Please keep us posted and if you have questions, there's always someone who has experienced the same thing or something very, very similar and will share with you.

Love, light and laughter,
Ink

Kathy1108

Hi Karen,

I had a mastectomy, chemo and radiation and I had 3 lymph nodes affected and a very small amount in a fourth one. I did lose my hair from chemo. But radiation was not bad at all. I did not get a tattoo, they just used a marker on my chest to map out where exactly they have to give the radiation. They had to touch it up often. It was a little uncomfortable to keep my arm up for the radiation but they put a pillow under that arm and it was better. The hardest thing was to go every day for 30 days. I had a schedule for it that I keep crossing off each day. My last radiation treatment was on Christmas Eve 2003. I do wear a prosthesis bra, at first it feels strange but you will get use to it. They have a light weight one (that is the one I have) it is by Amoena called Prema. This one does not feel heavy. I also went for another mastectomy on 8/17/04(this one was my choice), I wanted to do everything I can to prevent me from going through this again.

Kathy

Unknown

Karen, as Ink said, you need to get AT LEAST 2 opinions. When I had breast cancer (over 11 years ago) I had a modified radical mastectomy (some lymph nodes involved) with immediate reconstruction. My cancer was estrogen sensitive and I was post menopausal. The first oncologist I went to was all gung ho to give me both chemo and radiation and was ready to start that day, but when I started questioning him it was obvious that he had never even looked at my medical history. I called my insurance company and told them I wanted a second opinion. The 2nd oncologist had not only read my medical history, he had also gone to the hospital and looked at my X-rays and scans. I chose not to have either chemo or radiation because; 1. I had other physical problems that made chemo pretty iffy, 2. since my cancer was estrogen sensitive and I was post menopausal the chemo and radiation would only increase my chances of survival by less than 10%, 3. I was a widow supporting myself so there was no way I could take time off work if I needed it, and 4. I was in my late 50's and was determined that I was going to enjoy living while I still could rather than living sick for so little improvement in my chances of survival. My decision was right for me, but
whatever your decision, it is YOUR choice, NOT the doctors - you have to live with it, the doctor doesn't.
Whatever your decision, we'll all be rooting and praying for you.
Clara