Who didn't do radiation and why?

unbound

I'm very close to opting out of radiation. Too many obsticles. Takes too long, 7wks!, traveling long distances, money for travel, hotels, taxis. The whole thing is ridiculous, for me.

 So why not just skip it? It's already been 13 wks s/p chemo, and 8 wks s/p partial mastectony, stage 1, 1cm, negative lymph nodes...

If it comes back, at least I'll have the option to do radiation then. Yall are so smart. I don't know what half the stuff is that yall talk about and I've read 6 books, numerous research articles, and this web site till I'm blue in the face!

Tell me your experiences.

Are there others who have said no to radiation and why?

coonie

I chose a bilateral mastectomy 4 weeks after finishing chemo. My onc said radiation wasn't necessary since I went with the mastectomy.

Good luck on your decision.

MarieKelly

I had a wide margin lumpectomy and biopsy tract removal in March of 2004.  The  PRIMARY reasons I refused radiation after lumpectomy are as follows;

1) My tumor was small, low grade (grade 1) and well-differentiated with a Ki-67 of just 5% and as such, a local recurrence (what radiation is intended to hopefully prevent) of that tumor really did not pose any significant threat to my life. I just couldn't rationalize accepting a treatment like radiotherapy when the potential risks of that treatment far outweigh any possible gains in my particular situation.

2) My tumor was in the left breast.  I have valvular heart disease (VHD) secondary to taking diet drugs more than a decade ago.  I wasn't willing to risk the possibility that ANY part of my heart might be directly or indirectly radiated and wasn't willing to accept the potential risk that it could worsen my VHD if it did.  When the risk of tumor recurrence is low to being with and when the potential consequences of that possible recurrence are also low  - then in my opinion, the risk of having radiation far outweighs any potential benefit.

3) I also have some pulmonary hypertension, secondary to the VHD.  With radiation to the chest for breast cancer, some small portion of lung tissue is often included in the radiation field - either directly or through scatter. Again, I wasn't willing to risk worsening of my pulmonary problem for the minimal to no benefit I would recieve from allowing myself to be radiated. 

4) As I mentioned previously, with left sided radiation for breast cancer areas of the heart are sometimes affected. The consequences of this could be radiation induced coronary artery disease which wouldn't even be recognized until a decade or more after the radiation (late consequence).  A portion of the left anterior descending (LAD) coronary artery is sometimes affected when the left chest is radiated. The LAD is commonly known in medical circles as "the widow maker" because an occlusion in that coronary artery is often fatal. Once again - not willing to assume the risk when my potential benefit from radiation after lumpectomy is none or very, very low. at best.

5) I'm a half pack per day smoker and have been since age 16. As such, my risk of lung cancer is significantly elevated above those who have never smoked. Studies have shown that radiation to the lung tissue of a past or present smoker raises the risk of lung cancer much higher still. Therefore, radiation after lumpectomy given for my tumor that in all probability was cured surgically is again, assuming way too much risk with no benefit.  

In February 2010, it will be since years since my diagnosis. I refused radiation and hormonal therapy (both arimidex and tamoxifen). The only treatment I had was the surgical intervention I mentioned above. I get a yearly mammogram as follow up and that's it. It's all about risk vs benefit when making treatment decisions of any kind. Good luck to you in making yours - it's never easy.

GramE

I can add to the above about left side radiation and some of my reasons for not having radiation.

1.  Several reconstructive surgeries after a car wreck on my left (dominant) wrist and hand, which resulted in trauma induced brachial plexopathy (nerve damage is the short definition).   Since I am very left handed and this left me with 30% use of that arm and hand, and I had read about radiation induced brachial plexopathy - sometimes several years down the road - I figured I already had that side effect and did not want it to get worse.

2.  Left side lumpectomy, after dose dense chemo, resulted in no cancer cells present - gone, zapped by chemo.   I responded very well to chemo and I could do chemo again if needed.

3.  No node involvement.

4.  Strong likelyhood of lymphadema, which I have been able to avoid so far.   Due to the surgeries, my circulation - or lack of circulation in that arm, and nerve damage,  a quality of life was my goal.

5.  I am a widow since 2003.  Although I am not ready to become an angel (or devil), I am almost 64 years old now - dx at age 62, 3 weeks before my one and only son's wedding.  I intend to see my grandaughter, who is due to arrive in March and I plan to spend at least a few years being her grammy.  

6.  My life expectancy is about 20 years, give or take a few.   If I should need chemo, so be it.  If I should need a mastectomy, that is still an option.  If I should get mets, chemo and mastectomy are possible.  

7.  I am a smoker.  My heart scans all remained unchanged during my tx of A/C and Taxol and a year of Herceptin, so my heart is ok.  

8.  My skin is super sensitive to any kind of lotions, adhesive tape, antiseptic soaps and I have multiple drug allergies, including antibiotics.  If a skin breakdown should occur, I would be unable to treat it in the usual way - lotions, creams, antibiotics without a possible allergic reaction. (I have gone into shock with antibiotics in the past).

9.  I have seen radiation burns and skin breakdown from BC treatment in younger, somewhat healthier women.   And I have read on this forum of those with delays in treatment due to such skin problems.  

10.  My quality of life is important to me.  My family and I discussed the benefit of radiation and the statistics did not outweigh the potential permanent, debilitating, and harmful side effects.

11.   It is over 18 months since I was diagnosed and I still owe $ 7000, and I had what I thought was a good insurance plan.   The cost of radiation treatment, even with insurance would be another $5000 or more out of pocket.   And we will not even mention Health Care Reform and pre existing conditions.   

12.  I  had an appointment with a very well known radiation ocologist who dismissed my concerns with something like:   not many have side effects, but we cannot rule them out.  Don't worry, we do radiation all the time.   We can keep you alive long enough to pay off your debt.    

Perhaps if I were younger, had children who needed me as a hands on Mom, if I did not have mastectomy as a future option....    

Good luck, feel free to pm me if you like,   Nancy 

 

unbound

Thank you both for taking the time to write. I appreciate and admire everyone on this site for opening their hearts and sharing their stories and knowledge, Thank you.

P.S. Still sitting on the fence. Will post an update with final decision and any additional info (probably bias to my decision) soon. Big Smile!

Unbound

ruthbru

I've never written in a forum before but felt I needed to write something to you. I, too, faced a lot of hassles when it came to radiation; a 200 mile daily round trip for 6 weeks. When struggling with the decision, I talked to a friend who is a nurse and a long time cancer survivor; this is what she said to me, " 6 weeks is nothing compared to the rest of your life. I can't say which part of my treatment saved my life, but I'm glad I did them all. Maybe it was the radiation that allowed me to see my children grow up, marry, and allowed me to be a grandmother, and maybe it didn't make any difference, you can't tell for sure, but now even if the cancer does come back at some point, I will never have to say, 'if only I had done all the suggested treatments this might not be happening." It made a lot of sense to me so I just sucked it up and went through with it. It wasn't fun bu it did give me peace of mind to know I had done everything I could. Good luck! 'Fight Like a Girl"! Ruth

momzr

My situation is not really the same as yours, but I chose no radiation.  I had a diagnosis of DCIS -- on left breast in July '08 - this was after a digital mamm which showed a cluster of microcalcifications followed by a lumpectomy/surgical excision.  So am about a year and a half  out now.  Mine was a very tiny, tiny area of DCIS (1.6 mm) with nothing identified as comedo and no necrosis and I had clear margins after a surgical excision.  I have not had any additional treatment besides my excisional biopsy last July which got all of the DCIS out.  At follow up appt. a week after the biopsy, a medical oncologist spoke with me and told me that my tumor was sooo tiny he thought there was a miniscule chance it would cause me problems down the road and he did not recommend radiation therapy or hormonal therapy with their associated risks and side effects for my particular situation.  He actually told me I was not to lose sleep over this or worry about it and he never expected to see me again.   I also met with a radiation oncologist who wavered a bit on his recommendation, (seems I was sort of in a 'gray' area on rad treatments mainly because of my age at time - 46 - and one margin although clear was 'close') but ultimately told me after we had a long discussion that he says I get a pass on this and that with my particular circumstances that if I were his wife, he would NOT treat me with radiation.  Therefore, I decided against doing anything more except for close monitoring with mammograms and MRI's as needed. Since that time I have had both follow up digital mamm on my left side in December '08 and a follow up MRI in Feb '09 as well as a regular annual bi-lateral digital mamm screening on both breasts in June '09 --  with nothing 'alarming' showing up on any of these monitoring tests.  I returned again a couple weeks ago for a re-check on the left breast due to some strange pain and sensations I was having, but after mammogram followed by ultrasound, the radiologist did not see anything of major concern.  I am to have another breast MRI in February 2010 a year since last one and am fine with being monitored closely (just don't find anything more thank you very much!)  I will have another yearly bi-lateral annual screening mamm on both breasts again next summer.  While I do not feel I am out very far from original diagnosis, so far, so good in my particular case.

Bless

I had LCIS in both breasts and .7mm ILC in the left breast.  Lumpectomy in both breasts with 1 cm (10mm) clear margins.  I am 43 years old.  I am opting out and just going with close monitoring. 

 I just had an apt with medical oncologist Monday. I was giving him a chance to "talk some sense into me" If he thought I was crazy for not taking tamox or rads.  He told me something that I had never heard before.  He said that the radiation might lower the risk of BC recurring in the breast in the future however, it would not have any effect on it occurring anywhere else (since I had that little bit of invasive it could in theory grow anywhere).  For me that took a huge weight off my shoulders.  If, God forbid, it does come back in a crazy invasive manner, I don't have to think about "what if I had had radiation?"    Now mind you, I am really anal retentive and will do biannual screenings at a major breast center and will research who has the latest and greatest machines and tools for detection and both my BS and Med Onc know that is how I am.  So they have said it would be reasonable for me to go with screening.  However, the med onc said that if someone else with the same diagnosis came in and said they wanted a bilateral mx, he would say that was totally reasonable too.  We are all individuals and there is no one right answer for all of us.  You have to do what you are comfortable with and what you can afford and find the time for.  As he said to me, "If you were going to go on a 4 year missionary assignment, a bilateral mx might be easier and safer for you"  But I am retired and have what he affectionately refers to as "too much time on my hands"  So I have plenty of time for research and screening. 

Good luck

deli

I had a 2 small dcis in my right breast it was grade 3. I am 49 and premenopausal. I had a lumpectomy(clear margins) and bilateral breast redcution. I was also pr and er positive. My Van Nuys score was 7 because of the grade of the cancer. My surgeon and oncologist both agreed no radiaition and no tamoxifen. I am just going to monitored closely. Has anyone else skipped rads and tamoxifen. I am happy but nervous because everything I read says you have to have radiaiton with lumpectomy.

Anonymous

I did everything in my power to skip the rads. I am a 7 too, on the VNPI and although I am er and pr +, I will not take Tamoxifen. I am 53 and premenopausal. My DCIS is on the left side, and I am still not comfortable with the thought of radiation, even though I am supposed to start on Tuesday with the simulation. I originally thought no way would I do radiation, but according to an expert in DCIS with whom I had a second opinion consult by phone, the only way to lower my VNPI to a 6 (and not need radiation) was to get a third surgery to achieve wider margins (than my 2mm) ...or assume the 30% risk of recurrence. (I had a re-excision 2 weeks after the first surgery for bad margins). My surgeon refused to do the third surgery and said if she were me, she would just get the radiation. So I decided it might be best to do what everyone else does...get the radiation, and stop worrying! Am I crazy? My surgeon is also pushing the Tamoxifen on me, but the consult dr. told me there are 2 new studies out showing Tamox has little benefit for DCIS patients. Hmm.

MarieK

I'm very glad to have found this thread.  I have my rad onc consult on Jan 15 and I really do not want radiation.

I am just about finished chemo (6x FEC with last one on Jan 19) and will go to the appt to hear what the rad onc has to say.

My worry is everything that has been mentioned above - damage to heart, lungs, skin etc.

I was hoping that I would get a pass on radiation because I did have an extensive mastectomy with clear margins (even ended up with some divots where tissue was removed!) but I guess with the size of the tumour and 1 node positive I have to at least consider the option.

3monstmama

I am having a lumpectomy for DCIS next Monday.  I never liked the idea of radiation and I like it even less the more I think about it and the more I read.  I really appreciate the opinions and experiences provided here.  I think the next step is to talk to my doctor.

Thanks all.

mom2Bnegativex3

bump. Hello all of you fine ladies. I hope you are all doing well. I am 35 and have TN BC. I go see my rad doc on tuesday. He is going to decide if I am going to have rads or not. I have had 2 rounds of A/C and my, what was  a 3 cm tumor is now almost not palpable. They will give me the last two A/C treatments and then go for surgery. I first have to decide if I want to have a bilaterel mast.If I have to have rads they will do a unilaterl one. Wait and then do rads and then come back do the second mast and the reconstruction. When would I do the T part of my chemo? How do they decide if you have rads or not. All of my scans were clear. the tumor was budding up next to the chest wall but now is movable. Thank you for any input. Ihope youall have a great day.

 Unbound I wish you the best in your decsion and Ihope for the best for you!!

MarieK

I met with the radiation oncologist and have decided to go ahead and do rads.  I will start in March and will go for 5 1/2 weeks (28 sessions) low dose spread out over a longer time frame.  He gave me the choice of 3 weeks (15 sessions) of high dose but said that if I was having reconstruction then I should go for the lower dose to spare my skin/tissue and have a better outcome for recon.

It was a hard decision to make but after asking questions and listening to my consult (they gave me a recording of it to listen at home) I decided that it was the best thing for me.

Good luck to everyone else in making their decisions!

Marie

ruthbru

I am glad you are doing radiation. I think we need to do everything we can so that we only have to do this whole cancer thing ONCE! Good luck! Ruth