Radiation regrets?
Comments
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though the radiation was the HARDEST part for me (I got a whopping case of the shingles on my left radiated side....THEN got squamous cell carcinoma because of the burn prompting another surgery) I promised my parents I would do EVERYTHING in my power to rid myself of it. And I did.
No matter how painful.
So, no.........no regrets.
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Blimey bdavis, you have put the fear of god in me.
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I am on the fence about it being a pro or a con. I too wanted to throw everything at the dreaded bc, and since I had a lump. felt I needed to have rads. I was unfortunately in the 2% that have a bad reaction to rads., I did not burn as I tan easily but was not prepared for the after treatment side effects. My irradiated breast is darker, skin is hard and stiff and that breast tends to get edema. But I do feel it will decrease the chance of recurrence, so very mixed feelings. Karen
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OMG, it gets worse is anyone for rads
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ali... didn't mean to scare you... just gave my reasons for choosing against it... but another and most important reason was that I felt I had a better chance of avoiding recurrance with BMX.
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Hey don't worry, I'm pooing my pants because my onco said I have to have rads because I have 37% chance dying in next ten yrs.
Don't you just love docs -
I have no regrets on rads. My short term SEs were very manageable and so far no long term SEs (though those are the ones that are scarier, right?) My understanding is that rads cuts the risk of recurrence by 40%. Babyfacenelson, that's great that your risk of recurrence is under 10%. (Mine was higher. I'm also premeno which means I've got more estrogen flowing around. I'm taking tamox. My MO said my risk would be lower if I were post-meno.) Maybe I've taken too many calculus courses, but I think the lower the initial risk, the harder it is to get significant benefit. The risk will never be 0. FWIW, when we did the simulation, my RO avoided my sternum. He also said I had "good anatomy" and my lung exposure was almost zero. (much much better than most). You could be lucky that way too. (???) Don't forget, you can always get a second opinion. Or ask your other cancer docs. (I asked my BS and RO about their opinion of tamox, for example. If you had really wide margins, your BS might think rads is less necessary).
Good luck with your decision. What's hard, of course, is that we don't know what's going to happen. One counselor told me that the goal in making decisions is to have no regrets, regardless of the outcome. i.e. if you don't have rads and have a recurrence, how will you feel? If you have rads and then never have a recurrence and no long term SEs how will you feel? If you have rads and then have long term SEs, how will you feel? etc.
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It all comes down to the Dirty Harry choice, doesn't it? Do ya feel lucky punk? Well, do ya?
I think the "no regrets" standard is a pretty good one: how will I feel if I have RT and end up with miserable, chronic side effects? How will I feel if I don't have RT and have a recurrence? If I had anything other than the stage/grade/node status that I have, I would almost certainly risk the RT; but with such a low risk of recurrance, I think I would be more angry and depressed about ending up with cording or lymphema or fat necrosis or any of the rest of the parade of horribles that have to be figured in.
One other thing that figures into my admittedly amateur calculus is the fact that RT itself has been shown to convert about 30% of non-aggressive cancer cells into aggressive cancer stem cells. The researcher that presented the paper on that made a point of saying that he was still in favor of RT--still thought it outweighed the risk of recurrance--but I am not so sure.
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Perhaps that is radiation of years ago... I have a couple of friends who underwent radiation as teens for Hodgkins Disease to later get BC from the radiation. And when they got BC they were not candidates for radiation since they had already been radiated. BUT I had also read somewhere that after radiation thyroid cancer was more prevalent.. not sure if that is true.
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I really don't know what to do, my heart say's no rads but head says yes.
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Babyfacenelson wrote:
It all comes down to the Dirty Harry choice, doesn't it? Do ya feel lucky punk? Well, do ya?LOL! Yes. FWIW, I signed up for rads and then got stressed out before I started (hence my first call to counselor. We yammered on the phone for 1.5 hrs and she was super helpful. It was free through our local BC support center. My Onc docs also have a free social worker too) The study you're citing is new. (that data was not available last year when I had Tx). I can't undo my decision so I haven't read it extensively. (Don't know, for example, if the study's been duplicated, how large the population sample was etc etc). But yes, it's the big risk:reward decision. When your risk of recurrence is low, it's hard to get the same benefit (while taking on the underlying risks of Tx). FWIW, there is at least one women on this board who had a very small IDC tumor (0.3cm?) who chose to skip rads. Not sure if she's active here now, but maybe you can find her posts. (they were within the last year) FWIW, my tumor was 0.5 cm. BTW, if you're doing the no-regrets exercise, please remember that it's possible you may have rads and not have serious SEs. It could happen...
bdavis, yes, one of my concerns (that isn't discussed much) is the risk that rads could cause a new cancer. My limited understanding is that this is more frequent when the patient is young. (20 and younger). But who knows? Maybe it's just a question of living a long life. I have no idea what the risk is and if there is any data to support this. Maybe it's very rare, which is why it's not even discussed.
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I have to agree with Momine...radiation was the easiest part of the whole trip. I had no reaction at all...had 16 sessions with only a slight pinkness in one area. I am no spring chicken either...am 68...very fair skinned and always burned in the sun. I had a lumpectomy followed by DD AC (I couldn't take the 4th dose) and 12 weeks of Taxol. I have lymphedema that I had right after the surgery and a seroma as well since surgery. I can't blame the rads on ANY SEs. The radiation was a breeze...used Glaxal Base 3 times a day and it worked well. As for my tats I love em as I proudly tell my daughter her "cool Mom" has 4 tats as well (she has 2 tiny real ones)...can hardly tell them from the freckles I have. I am also taking Arimidex for the next five years.
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I had a .9mm tumor, did rads, no chemo due to low Onco score. I put aquaphor on my breast 3 times a day every day, even before I started rads. I never burned. It was relatively easy, can't believe I say that now. My nipple did change color, and slowly, very slowly, runed back to its normal color. Good luck to you!
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You DO NOT want a recurrence!!!! If the statistics say to have radiation, HAVE RADIATION. Those statistics are there because many brave sisters who went before us volunteered for clinical trials to find out what will give us the best chance for a long, healthy, cancer-free life.
The radiation process they use today is very pin-pointed and precise. For me, it was the easiest thing of all. I never got tired and I only got red at the end, like a sunburn from the inside out. But even if I had had problems, I would have been glad that I had done it. These are life and death decisions with no redos. If one single cancer cell is left behind, you will be dealing with this again. I didn't want to have any regrets about what I could have done to fight it.
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Ali68
Listen to your head!!!!!! I am no expert, but I have spent a lot of time reading everything I could get my hands on, and if my dx was anything other than Stage 1 Grade 1, I would definitely be signing up for RT. There is a reason why it is the standard of care. It really is worth it if your risk is moderate to high. I just question whether it is over treatment for someone with low risk.
Remember, the scary tales by people who have had long term side effects are ALWAYS from people who had RT a long time ago! The treatment itself is improving all the time.
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Ali68... I agree with the others.. as a stage IIIa, you need the radiation. If I had been told that I needed it even with a MX, I would have done it. I gave my reasons for not doing it and choosing something else instead, but I choose something, and I had that choice... You have a much better chance of no recurrance by having the rads. I was told I had a 40% chance of recurrance w/o rads and that number would drop to 20% with rads... that is half... huge. With the MX, it dropped to 14% and that is a systemic recurrance.. no radiation or MX can lower that for me... but I now have a 2% risk of local recurrance.
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Thanks I know what your saying is right and I have to go with the flow.
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Are you over 70? If so, there is very little benefit my rad onc said.
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Radiation.....ugh! I have been dealing with the decision to do or not to do radiation for the last two weeks. If I didn't spend so much time on these boards reading others stories I wouldn't be in this mess (LOL). I had a mastectomy and the protocol at my major teaching hospital, headquarters to the NSABP recommended no radiation for me with two positive nodes. So, I had another opinion at another major NCI hospital in my city and they said "we radiate women with two positive nodes". Then I come on these boards and find women who had mastectomies with no positive nodes, no LVI, and medium sized tumors getting radiation?? So, then I do research.....Danish study says premenopausal women with 1-3 postiive nodes may benefit from radiation. I have spent weeks trying to figure out what I should do. I am in the "gray" area. I finally decided two days ago to trust the opinion of my team of doctors at my hospital and I am not having radiation........I can't keep this up anymore.....I NEED TO MOVE ON WITH MY LIFE!!!!
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I too struggled with yes or no to rads. I too was in the "gray" area. I first had a lumpectomy with only sentinel lymph node removal which was positive. No clear margins. So then a double mast with no more node removal. The big question was whether there were more nodes involved. No way to know unless I opted for more surgery. Even then I might have to do rads anyway so I chose no more surgery.
I had three rad onc opinions. I did one independent one of those on my own and that was with a female rad onc at UCLA who specialized in breast cancer. I handed her that study done at UCLA regarding radiation causing cells to become stem cells.
She said (and a later onc concurred) that this study is laboratory. Not human trial. So although many things are shown to do this or that in the lab, when it comes to the human body that changes. So there is no real human trial data that proves this is the case. I have read lots of papers that progesterone kills breast cancer cells but when humans get progesterone it can inflame cancer cells. All we can do is use what is presently known to kill the cancer. When something better comes along, like cancer vaccines, then all of this will be history.
She also took all of my diagnosis and pathology and put it into a program that was created with every major study and all research, with every possible combination of pathologies and treatments. It evaluates yours and tells you what the outcome was for people like you, with treatment and without. The conclusion she got for me was that radiation conferred a benefit for no local recurrence.
My third and final rad onc, the one I am with now, discussed my case with three other specialists. One said no and two said yes. So I wound up finally with two nos and five yesses.
I discussed the UCLA study re stem cells with him and the fact that our cells are designed to resist radiation such as from the sun. He said yes and they are designed to resist all outside damages including chemo but the facts show that chemo and radiation kill cancer cells.
The slightly older studies said 1 to 3 nodes, no rads. The newer studies now say even with 1 node rads cofers a benefit. So I opted for rads. 28 treatments. I was mapped and saw the CT pictures so that I could see where my heart, lungs, carotid artery and thyroid were ad the pics are colored to show where the beam will be and where the fallout will hit. My heart was well out of the field, my lungs get a tiny bit of very small fallout, nowhere near the carotid or thyroid.
This onc told me that the only time you would get thyroid problems is if the rads were directed at head and neck cancers. Also true for carotid. The newer machines such as the one I am getting is Tomo Therapy. Very precise mapping and very precise radiation. I have three tiny tatoos and each time they put me in the mold that was made of my upper body, line me up with laser beams that come from different points in the ceiling to match up with my tattoos. Then I am zapped for two minutes.
I have completed 11 so far and no effects at all. The rad onc told me that if there is any redness it usually occurs toward the end. Ditto the fatigue if you experience any.
It all depends on your physiology. And I also think your state of mind. Be positive, stay active, eat well, sleep well (I know that sometimes sleep is difficult but I often take Valerian root to relax me or a glass of red wine).
I have and will do it all. Surgery, chemo, rads and then Arimidex. I am 70 years old and plan to live at least another 25 so I am doing all of this to make my plan a reality.
By the way, my mail lady had cancer twice, in one breast and then years later in the other. She had chemo and radiation twice and axillary node dissection and has had no side effects. The last rads were eight years ago.
Kathy
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I was dx only 3 weeks ago tomorrow and am suppose to have rads. Struggling with not knowing how long it will be, or whether I will be a candidate for internal, or if i even want that or to just go with the external. I know Ill feel better after I see the RO....just reading all the info makes my head spin. Want to make an informed choice. Hoping they tell me it will be a short amount of time, since I was dx with DCIS, stage 0.....and my lesion is only 12mm.
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Chatsworth - Thanks for the information. I just find it unbelieavable how so many institutions have differing opinions on the subject of radiation. Radiation oncologists like to radiate though and that was part of the reason I got three opinions. Two said "no" and one said "yes". I had a BMX with ALND for a total of 20 nodes removed. I barely crossed the threshold with macroinvasion in the two nodes that were positive. I had very small tumors, I had no LVI and I had chemotherapy. I have been very aggressive with my treatment thus far, by choice, but I can't come to terms with radiation yet. I had a direct-to-implant reconstruction too.....that could cause a whole other mess of problems and complications and problems, although, I certainly am not basing my decision on the implants. My breast surgeon is the chairman of the NSABP and he said no radiation too. The NSABP is top notch in the World when it comes to clinical trials......like I said, I have to trust my docs!
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wild,
If I had done the total axillary dissection and found only one or two nodes involved I probably could have skipped rads. The problem is that I didn't know and if I did go back for surgery and they found 2 or more I would still have had to do rads. Damed if I did and damed if I didn't
I understand there are other factors that are considered when evaluating for rads. Size of tumor, vascular invasion and if there was macro involvement in nodes and also age. From what I have read if there are at least two of those factors then rads are advised.
You seem to have a good pathology for skipping rads, especially since you know exactly how many nodes were involved and there were only two.
Look, as far as I can tell from what I have read, researched and learned from these forums, there is no absolute right or wrong. Breast cancer is all over the map in the way it occurs and sometimes re-occurs. I have even read posts of women who had zero nodes and small tumors who wound up with it coming back with, rads and with no rads. Who the hell knows what to do?
The biggest threat is recurrence. If I could know that by having my boobs lopped off and a node taken that we got it all. Case closed. But, there is no way to know. We can't put our bodies under a microscope to see the microscopic cancer cells that we can't see with any of the scans available, x-ray, CT, Pet, Mamograpy, MRI, Ultrasound. So the next best thing is to kill the little suckers with chemo, radiation and anti-hormonal drugs and hope we get the rest of them.
One day in the future there will be a scan that will be able to see every cell in our bodies (Star Trek anyone?) and be able to see the bad ones and zap them with something before they get out of control. And there is the real possibility of a vaccine within the next ten years. Both of these things are within the realm of real possibility in our lifetimes and certainly in the lifetimes of our children.
For now, for me, it's a crapshoot and all I can do is roll the dice and hope for a winner.
I wish everyone peace of mind no matter what you decide and pray that we all picked a winner.
Kathy
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Decision made!
I just came from seeing the radiation oncologist and the medical oncologist. I will be refusing radiation therapy. Although the RO said he thought I would not get severe skin problems and I had a 50/50 chance of not getting severe fatigue, he grudgingly admitted that my odds of recurrance were already very low. He said the more severe late effects like fat necrosis and nerve damage were also very rare; he seemed to think that the lingering pains had as much to do with surgery as radiation. The MO also admitted that my risk of recurrance was very low and, while she didn't agree with my refusing radiation, she was not shocked or disturbed by it. She said she would have given a strong argument to someone with a more more aggressive tumor, but she could understand my decision.
Thanks again to everyone who shared their experiences in response to my question. I am now going to turn my attention to hormone therapy and lifestyle changes.
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Personally I would of opted out of rads if I had known how stressful and badly burned I would get.I was a mess with 3rd degree burns could not even wear a tshirt.My rad team kept changing staff so I was terrified that my treatment would not be correct.Then the bolus mat was left on for too many treatments.I found out later from the RO. 4 years later and my ribcage is still so tender that I cannot sleep on my stomach.I have now developed HP which I am sure is related.I have not had a muga scan to check on heart damage.I do regret rads. Good luck with your decision.
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Lucky you Hun for not having rads I think I would do the same if I were stage I.
Good luck I know you will be fine. -
Babyface, no BC connection to the hyperbole lady, as far as I know. I am just a fan, and since BC was the best excuse ever for not cleaning all the things, it seemed appropriate for an avatar here.
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I am coming to this thread a little late and just wanted to say do not associate pale or fair skin with automatic skin breakdown and blistering. Not all of the pale women get the "skinburn." Not all the dark-skinned women are in the clear, they can blister too. About one third of women have something more severe than the common pink/tan on the radiated skin.
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My post-radiation fibrosis/axillary cording is back only 6 months after successful physical therapy to break it up. It hurts worse than ever when I try to straighten my arm over my head, makes washing hair painful. The cording runs down my ribs and down my arm to my elbow and is painful there too.
My breast feels dead, part of it looks dead, especially pale areola and inverted nipple. 3 years post-radiation and it continues to hurt and get uglier.
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I've only had one consult, so far.. The RO said a resounding "NO" to rads. Risk/ benefits analysis just didn't prove to be worth the 8%- at least in her opinion. For her it was more of a no-brainer. She was pretty adament and more than once stated she was surprised my MO even suggested a RO consult. She was very clear with communication and I walked away feeling extremely informed and convinced.. Now, reflecting back, chemo brain has me wondering.. I do record every consult so I can go back and listen.. and will defo be revisiting our conversation.
The problem is, my MO assumed I'd be having radiation. The reason I know is because she said "I'll need to see you after radiation." Both docs are at MDACC in Houston. My MO is very Triple Negative & all aggressive BCs savvy. She didn't question or argue the no radation, however. Instead she asked which doc I saw. When I told her she went on about how much she respected this particular RO's expertise.
Sorry.. just pulled a search so if I'm in the wrong section, it's all purely about radiation decisions.. TNs as many already know are very high risk, yet that decreases greatly with a pCR.
I had a bilateral mastectomy, 6 rounds of neoadjuvant FEC when the Taxol created tumor growth... and I'm BRCA1+. No positive lymph nodes.. a pathological complete response to chemo.
If you were me would you get more opinions? Don't believe I've ever made a decision based on only one opinion.. and certainly nothing this critical. In retrospect I wonder if this RO had every single fact & knew I was TN. I simply know at the consult I was completely sold on what she was saying. She addressed all my questions before I even had the opportunity to ask. SO refreshing for a change! . And, it's not because it's what I wanted to hear, I'm the personality type who wants to throw everything at the beast up front. Yet.. I also have a family history of later life leukemias as well as BC.
What to do.....what to do.. I'm so sick of chasing opinions. Then again.. it's my life & future health at stake.
Another "No" would seal the deal for me. A "yes" would certainly muddy the water. Any thoughts?
Thanks for allowing me to put this out there... I haven't really talked about it since my appointment day before yesterday. Forgive my very real chemo-brain if I sound like a rambling moron.
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