Radiation - yes or no?

Azz

I am facing radiation starting on December 29th. After all the material I've read about the side effects and discomfort associated with radiation,  I'm wondering if it's really worthwhile. Some statistics show a very small increase in survival rate and slightly lower incidence of recurrence, but I wonder if it's enough to go through the whole procedure.

Has anyone had radiation to one breast and felt it was the best solution? I'm so tempted to go with more natural means including supplements like green tea extract, Flor-essence, CoQ10, extra Vitamin D, Modified Citrus Pectin, Beta Gluccans, and others recommended by the Life Extension Foundation. Would appreciate any feedback on your experiences.

Thanks.

ruthbru

I was GLAD to have radiation because I never want to play this game again!! I didn't find it a bad experience at all. Do the radiation. If there are still some stray cancer cells still in the breast area, eating healthy won't mean a thing to them (not that eating healthy, exercise, keeping a good weight etc. aren't important to help prevent a recurrence, because they ARE extremely important; but you want to make sure you've got rid everything the first time around...so there won't be a second time around.... and radiation is important for that reason). Best of Luck! Ruth

edited to ask: did you do chemo? If so, radiation is a piece of cake compared to that part of the treatment.

o2bhealthy

I chose not to have radiation.  It was a personal decision and against my rad onc's suggestion but both my DH and I felt it was over kill for my stage 1, 0/3 nodes,  DCIS/IDC after a BMX and TCH plus one year of Herception.  We figure if the cancer comes back we can revisit rad's at that time. 

I was just recently dx'd with Thyroid cancer and again radiation (RadioActive Idione) was mentioned and I declined, again.  My thyroid cancer was small (5mm) clear margins and 0/2 lymph nodes.

Without knowing what other treatments you have had, all I can advise is do your own research and make your decision based on what your have learned and what you feel you can live with. 

Best wishes!!!      

BarbaraA

I did it and I am glad I did. It gives me an extra margin of preverntion of same breasat recurrance. I did not find it to be bad. I am large breasted but I used emu oil and never burned.

Cat123

I, too, am wondering whether or not to have rads when I am finished with chemo.  I had a left mx and four nodes positive.  The rad onc I met with is leaving it up to me.  Says it will decrease reoccurence by 5%.....that is not a whole lot. 

LtotheK

If you didn't have a mastectomy, I would consider it unwise to walk away from radiation.  Not sure where you are getting your information,but for a node-positive, stage 2 patient, radiation provides probably the best protection against local and even distant recurrence.  It is the most time-tested method out there.

A friend of my aunt's wanted to go all-holistic, and didn't do any of the standard treatments including radiation.  Unfortunately, it came back in three years.  I just don't think the holistic approach is the entire answer.  It is a HUGE help!  It kept me from getting neuropathy, protected my bodily functions during chemo,even helped me lose the chemo weight. But I wouldn't have relied on it soley to "fix" the problem.

I respect all opinions and decisions, it is murderously difficult.  Do as much research as humanly possible to make your choice, and get two, or even three opinions.

ProudMom_Wife

Azz - I am in the same boat as you with radiation.  I fall into the grey area on whether or not to do it with my pathology.  Since I had 2/4 positive nodes I am leaning towards only radiating the nodes and not my chest wall, since they did not find any lymph vascular invasion and my IDC was only 1.3 cm and everything else was clean.  But I keep going back and forth.  I am also using holistic/alternative methods as a compliment to the modern medicine.  I am seeing three medical oncologists this week and two radiation oncologist in the coming weeks to get their opinions realizing that each has their own bias.  Figured the more information and 'expert' opinions I can get the better decision I can make.  Best wishes and let us know what you decide.

jw523

To me the choice seemed to be Mastectomy/Chemo or Lumpectomy/Radiation.  I had a second biopsy that turned out to be neg. so I went with L/R. But if I had had 2 cancer locations I would have had M/C and might have chosen not to do radiation as well.  I also had the Oncotype test which was low and I didn't do chemo.

Unltimately the decision you make is yours and you can only go with what the facts and your intuition tell you. When you base it on facts and what your heart tells you you can't be wrong.

Claire_in_Seattle

I didn't question the need for radiation with a lumpectomy, and particularly not with nodes affected.

This is to make sure there aren't any stray cells left over from surgery.

It was no worse than needing to show up every day and being extra tired at the end.  And some stubborn swelling that is taking its time to heal.  But nothing that keeps me from doing all my usual stuff.  (Such as doing a 45 mile cycling event 4 days afterwards. "Being tired" meant I downsized from 70 miles.)

One of my close friends who was initially Stage 1 didn't do radiation and got to do the whole surgery bit over again.  She is just fine, but she did make sure she did radiation the second time around.

amlg1

I would also recomend rads,especially withpos.nodes.It is not bad at all,except it is everyday,like going to a job.Good Luck in whatever you choose.I wanted all the big guns.

Azz

I'm sorry everyone... I just typed a HUGE long message to post here and suddenly it disappeared. I feel soooo crushed that I didn't save it in word or something before trying to post it. I told you everything that has been going on for me and now I'm just too exhausted to write anymore.

Thanks so much for everyone who has responded to me. I will sit down and re-write my message tomorrow as there is so much I want to share and to thank each person for their advice. Thank God for this message board... I've been soooo lonely.

ruthbru

Hang in there! We have all been where you are now; and as you can see, have lived to tell the story. Sending you a big virtual hug! Ruth

Azz

I am so glad I found this forum and that all of you ladies have contributed so much valuable information and your own experiences. I see my radiation oncologist tomorrow and will ask him about all the things that bother me. For instance, like someone else on this board, I have read that the survival rate is increased something like 2 or 3 % after radiation and I have to ask whether the medical establishment is just fooling with us in a way. Cut, burn and poison is all I can see from this point of view. Anything that can't be patented is poo-poohed by the conventional MD's and big pharma is laughing all the way to the bank. I just don't understand why more natural procedures aren't recommended. Aren't some professionals even cautioning that continual radiation from mammograms can be detrimental to breast tissue?

I'm sorry to sound like such a cranky, negative wreck, but I am really wrestling with the treatment that is given to women. I sometimes think they offer radiation and chemo because they don't know what else to do with us. The difference between treated and untreated doesn't seem to be that much. There are even some studies showing that bioidentical progesterone could be used as an efficient aromatase inhibitor instead of arimidex, femara, etc. That is the next step for me after the rads. Who would have thought this whole thing would be so confusing ... and that so many of the decisions would be left up to the patient.

Does anyone else feel that cancer has kind of taken over your world? I don't mean I dwell on it with friends and family constantly, but it does seem that I'm on a steady diet of dr appointments, various other treatments (manual lymph massage for all the swelling under my arm and down my side from removal of lymph nodes), trips to family dr for pain killers as my breast, arm and armpit are so tender I can barely touch them. Whine whine whine - does anyone have cheese?

I apologize for this message but sometimes I find myself in such a dark place, so scared. And my first grandchild is due in January and I really wanted to be a major help to my daughter at that time. Thanks for reading... and thanks for all your replies. I'll probably go ahead with the rads but will post tomorrow after I see the oncologist and see if he has anything positive to say about the process.

lago

Azz although 2%-3% might seem small if you are the one then it can be huge. I had a less that 2% chance of getting breast cancer at my age, with my family history (none) and a couple of risk factors (dense breasts & no births). I'm not saying that it's worth the risk but if the long term effects are minimal then maybe it's worth considering even if it's a low percentage.

LtotheK

That's right, Lago, and that's why doctors are willing to push forward for a few percentage points.  Cynics often feel it's for cash, but I don't believe my onc is that sinister.  It is life and death we are talking about, after all.

Azz, you are right to question, I spent days, weeks, and months cumulatively asking all these questions and more. As I've stated many times, due to my young age, I felt it deeply unwise to step off the grid.  There were so few studies on women under 40.  I only have one beef with the natural forums here, and it's that they tend to "one size fits all" and recommend alternatives to everyone.  Age is everything in this game, and I've not seen a study yet suggesting a young woman say no to aggressive treatment.  It's virtually a different disease with totally different risk factors.

And we all relate to human interest stories. Unfortunately, mine included a close family friend who went all holistic, and got it right back.

As for taking over my world, yes, and no.  I am here on the boards far too often, but they saved my life, literally, on a number of levels.  I did make a decision a long time ago that I would engage with other aspects of my life more than ever.  I saved my life for that, not to be subsumed by the disease that tried to kill me.

I think the studies on progesterone are old, and some newer ones are showing it's a risk. Both sides will present wildly-different opinions. My take is that if it sounds like a wonder drug, it's too good to be true.  Cancer is the most elusive disease, and breast cancer is often described as "stubborn".  Since they don't even fully understand the role of hormones in the human body, I'm not too inclined to play outside the box. But some are braver than I, and I applaud them, and of course, wish them success on all of our behalf!

soulswithin

Well my oncotype test scores changed my theory. I started with a Grade 1 diagnosis, no plans for chemo and only a lumpectomy with radiation, and found out later the first labs were incorrect, and I was Grade 3. Which became NO DOUBT IN MY MIND whether I would do the radiation. I often wonder about the decisions we make and whether we can count on the test accuracy given to us.

I'm in the middle of radiation treatments right now and I have to say, I worry alot about future side effects. But when adding up all the surgeries, bad diagnoses and innaccuracies, delays for months, and problems with Chemo, I decided I did the right thing. It's all a crap shoot anyway, but I don't want to go through this again, and as much as I would like to do all natural, I know a woman who is dying because she did not go to a doctor and tried to treat herself with natural substances. It didn't do much for her.

suzieq60

Usually, if a person has had a mastectomy then rads are not required. However if the cancer was close to the chest wall, that's a different matter and they may recommend rads. I'm about to have rads on my other breast after finishing rads in May on the left - lumpectomies both times. I have no hesitation to do it again even after I had some skin breakdown in the crease under the breast the first time.

Sue

Azz

Well I'm back again after a very upsetting couple of days. I'm sorry to be a newbie to the forum and complaining and whining all the time, but I just don't know where else to go.... my husband is starting to fray at the edges and my friends, who have all been really supportive, only want to hear so much. At least this way, you don't have to read the post. I had finally come to terms with the fact that I would go through with the radiation so went for pre-radiation appointment yesterday. My 2^nd surgery on 9 lymph nodes came back clear, so I was sure that the Dr. had told me there would only be radiation to the breast when I first saw him. Yesterday the technologists told me that I would have radiation to the armpit as well - upper area beyond the surgery incision. I almost freaked out. The Dr phoned me today and told me he felt it was wise to radiate the area above the incision to all the nodes they couldn't reach by surgery as it was possible there was cancer there. Then he proceeded to tell me all about losing strength in my arm, weakness, lymphademia, ongoing pain and discomfort that could last for years, etc etc. I am trying to get in touch with some other doctors to find out if this is reasonable. The oncologist said if I didn't radiate that area and got cancer there, it would be untreatable. This all sounds a little crazy to me.

I cried off and on all day today - I find this whole thing to be so darn hard. I'm a lot older that most of you and probably won't live longer than 15 years anyway (age 68), so don't know why they would want to incapacitate my arm as well as the chest. Any comments?

And please forgive my rudeness for not thanking all of you for your comments. I didn't realize there was a discussion for older women and perhaps that's where I should be posting....

suzieq60

Azz: You have absolutely no need to apologise. The whole process is very scary I know. If you are worried about them radiating the lymph node area, you could get a second opinion, but my instinct is to trust the doctor. I didn't have positive nodes so wasn't faced with that requirement. Maybe someone else who had positive nodes can help.

((((((((HUGS))))))))))

Sue

Leah_S

Azz, you might want to get anothe opinion, if only to be able to discuss what you've been told. it seems the doc didn't give you all the information you needed until the tech told him you were upset. That itself doesn't sit right with me. He phoned you to say, "Oh, yeah, by the way, more areas will be radiated. Here's the SE's."

I also don't understand why he said that if cancer came back to that area it was "untreatable". Why not? BC is definitely a "treatable" disease.

I wish you the best.

Leah

edited to add: I had the underarm radiated - with 6 nodes involved it was deemed necessary and I agreed. I have recently (1 1/2 years after rads) developed mild le in my arm. No other ongoing SE's from the rads. And with 17 nodes removed I might have developed le anyway.

ruthbru

You really do want to make sure that all the cancer is GONE, but he should have been more upfront and honest with you. You sure don't need to hear things in a 'oh by the way' manner!!! Most people don't have all the SE they tell you about (they have to say them all, for legal purposes, I imagine), but most people are OK. By all means, though, get a second opinion; you'll want to feel confident going in that you are doing the right and necessary thing. Best of Luck! Ruth

LtotheK

"I also don't understand why he said that if cancer came back to that area it was "untreatable""

What he's trying to say,and I didn't understand is that a recurrence is fatal.  Not a new primary, but a recurrence of the same cancer.  I thought the same, until my doctor set me straight.  At the end of the day, this is what they are trying to avoid.  Once you get a return of the original primary tumor, chances of living more than 5 years are pretty slim.

This is why many intelligent and thoughtful gals enter the crazy world of chemo and radiation, despite lower risk of recurrence.  Here's the simple fact:  THEY DON'T KNOW why it comes back in some even low-risk patients. No one has the answers yet, doesn't matter if you are allopathic or naturopathic in scope.

Sorry to be strident, just want to make sure people understand that.  I didn't until I got my third opinion.  I just felt like, well, if it comes back, I'll treat it then.

Valerie77

Doctors refer to cancer as "curable" and "treatable". If I understand correctectly, localized cancer is considered "curable" whereas mestatized cancer is only "treatable".

I'm going thru the same thing - stressing over pros and cons of radiation!  

ruthbru

When I got my summary of radiation report (which I had asked for), one of the questions the doctors fill out is 'Reason for Radiation?" The doctor had typed in mine CURE.......that is what you are going for, you never want to be in the 'treatable' group, because then your cancer is terminal, and sooner or later, no matter what you do, it will kill you.

Looneymom

Not sure if one more post will help but I was right where you are 2 years ago.  I read and learned and looked at stats etc.. (which can be very confusing) until I have infor. overload!! I also agree that cancer is a business and there are some out there that treat us like we are part of the product.  I was in the grey area with my cancer also.  One rad. onc. from MD. Anderson Houston told me I had the largest mass of dcis she has ever seen in her entire career that had not gone to the nodes. (Lucky me!! ) I still decided against rads after getting 3 different opinions.  When I told my new breast oncol. he insisted even thought 2 out 3 opinions said I did not need it after a double mast. he wanted me to have it done because of my case was not text book and did not need the reg. text book treatment. Because I had a large mass of cancer not in my nodes a few doctors/hospitals took interest.   2 different Houston Hosp. Tumor cancer boards reviewed my case and I was told they actually argued over my rads treatments.   My PS said even though it was going to make his job really hard and possibly failing and ejecting the planned implants he wanted me to have the rads.  He said if it was his wife or daughter he would insist.  One other onc. opinion said it was not needed  and that I was 98.% cured from the mastectomy.    Think hard about this.  I did not have chemo and If I had to do chemo today I would really have to look at quality of life vs. the time I may have left.  The rads were not bad.  We had no elec. due to Hurricane Ike (I think) no air only 95 deg with a fan at night. I looked like I had a bad sunburn from party days in the 70's.  I had a few minor rib pain here and there but notice none now.   My rads treatments were nothing compared to the rads my husband did 13 years earlier for testicular cancer, back then his whole body neck to knees were done, he smelled like he was cooked when he came home and he is still around now to give us hell and is by no means crippled by the rads.  I am light complected & freckle and I did get a lower dose of rads than some but if I had to do it over again I would.  It was an easy thing compared to some of the surgeries & other complications I have had to deal with since BC.   I am glad now I did it because 2 years have past (the worst time for my type to come back with not a good future).  I did some natural vit & supplements while I took the rads even though they tell you not to it was kind of my trade out for doing the rads.   So if it is 2 or 3 %   like  the doc said to me - you don't need it you are already 98% cured!!  Yes according to the books, and non of us have bodies or lives that are text book.  Follow what your heart & gut tells you, when I have not done this I usually regretted it.   It is your time & treatment choice so live it the way you want to and don't look back.   Love & hugs to you and your family.

Cat123

I think with a lumpectomy you definately need rads.  I am confused because I had a left mx and 4 nodes positive so the rad onc is leaving it up to me.  He said if I choose to do so, he wouldn't just do my lymph which makes more sense to me.  For any of you posting....did you have a mx and still opted for rads?  I had a tissue expander after my mx and if I choose to have rads...it totally screws up my reconstruction for a few percentages points of cancer coming back. Although, like I said...with lumpectomy, a woman would definately need rads.

Azz....don't apologize...this is very scary.  I start chemo this Wednesday and I am very scared.  I am single and have fantastic friends but worry about getting very depressed.  It doesn't matter what your age is...I'm 47......this is terribly frightening for all of us.  PM me if you want to chat.  We are all fighting for our lives but the great news is that in this day and age....the majority of us will live and do fantastic! 

CTMOM1234

Ruthbru - I loved that your dr. typed that the purpose is CURE!  I'm glad I did those zaps.

Azz -- I do think that radiation is a worthwhile treatment. I went M-F for 6 weeks because I wanted to zap away any stray traces that may not have been handled from my lumpectomy, plus I had a small amount of IDC at a close margin.  I sleep well having done it, but each person has to make their own decisions based on their own particulars.

Now tamoxifen is a different animal (I'm mid 40s, very much pre-meno. and ER+/PR+ , so yet another decision-making process). To that, I passed, and continue to be content with my gut decision to not take. I agree with Looneymom : " It is your time & treatment choice so live it the way you want to and don't look back. "

MarieKelly

MHP70 wrote:"What he's trying to say,and I didn't understand is that a recurrence is fatal...Once you get a return of the original primary tumor, chances of living more than 5 years are pretty slim."

Well, "a recurrence is fatal" is an awfully strong blanket statement but fortunately, it's  definately NOT true. That statement implies that death directly due to the recurrence is a certainty and it's absolutely not.  And saying "chances of living more than 5 years are pretty slim" after a recurrence from the original tumor is yet another completely false statement.

Yes, there is surely some potential for increased mortality associated with metastatic disease resulting from a local recurrence. However, not all local recurrences become metastatic before they're identified and treated - and nobody ever died from just having localized breast cancer, be it a new tumor or a local recurrence of the original.  Salvage surgery and treatment affords continued long term survival to many.

I worked 12 long hours in a busy ER today and I'm too exhausted to find them now, but tomorrow I'll post some studies here that show local recurrence is not necessarily a disasterous situation. It would be a terrible shame to have anyone reading here believe that having a local recurrence is an automatic death sentence.  NOT TRUE.

DesignerMom

Azz-I had 33 radiation treatments and it really was NOT that bad.  It was a nuisance having to go every day, but I felt very little fatigue.  My breast felt sunburned, but really not bad.  I am definitely a more "alternative" type, rarely take any meds.  Now that I have completed chemo and rads, it gives me great reassurance.  I continue to look into many other alternative strategies to help prevent recurrence.  As  I will probably decline hormone therapy. I am very glad I have the advantage of chemo and rads.  Best of luck with your decision.  

VJSL8

I have  a different perspective as I had a lympectomy and radiation 23 years ago and then had a reoccurance. and no --a reoccurance is not always fatal. My oncologist at UCLA said that 30% of women with this combo (Lymp/rad) will have a reoccurance--that my reoccurance after 23 years was a failure of the radiation. Plus, there are long term major side effects to radiation. I have a girl friend that is a 15 year pancreatic cancer survivor--yet now her back bones are mush from the radiation she received. She has broken her back and is having major problems due to the radiation. I did not have many options 23 years and I feel I made the right decision at the time but there are more options now--my oncologist feels that I react very well to anti-estrogens and that is all I need now. I had been on anti-estrogens for over 10 years. So I think it's important to weight the risks and benefits to see what is best for you. I used anti-estrogens for a long time and I didn't have bad side effects, so for me they are a life saver, whereas, I probably would have had the same results without the radiation. Just my 2 cents.

LtotheK

MarieKelly, and everyone I apologize if I am giving poorly stated info.  I'm not talking about local recurrence.  I am talking about a recurrence of the original cancer, which can happen anywhere in the body. And, according to the three oncologists I got opinions from, this is a fatal situation.  Those were the words of my University of Chicago doc when I said, "why can't I just treat the cancer if it comes back?"  Answer:  "Because it's terminal."  Maybe it's blanket, but I think the point is well taken.  They don't want to gamble.

According to my radiation oncologist, radiation is not just for local recurrences.  Newer studies are showing that it also helps with systematic recurrence.

Additionally, my understanding is once it goes to the "treatable" stage, longevity is pretty grim.  That is the picture cancermath and all my doctors have painted.

In this case, I would be 100% thrilled to be as wrong as possible.

And, I would certainly defer to a nurse.