What happens if I say no to radiation

When you say rare sub-type was this "tubular".?  Mine was tubular, 5mm, ER and PR+, no lymph node involvement  and was told very good prognosis (better than IDC) yet still recommended radiation and Arimidex.  I just finished the 5 day (actually ends up 9 days) brachy therapy radiation with multiple catheters (it wasn't pleasant and much more difficult than I expected).  I do not want to go on the Arimidex.  I'm beginning to feel I am being overtreated as well.  Are there any others of you out there with Tubular and what treatment have you had?

To Alcie:

I am so sorry you had such a bad experience with radiation. I am seeing my doc today for the first time since surgery on Feb 8th and he will probably suggest radiation.  I am 75 and have an IDC, but if no nodes are involved I may skip it. I have atrial fibrillation so am worried about that; also have osteoporosis and heard that radiation can actually fracture ribs. I know that is very painful as it has happened to me in a fall.  I also have a tendency to be anemic---I plan to ask the doc lost of questions before I agree to this. Thanks for your post!

I, too, am a senior breast cancer patient (though at 63, I'm not as senior as Alcie1 and Srbreastcancersurvivor), and discovered that I am high-risk (BRCA2 mutation) two years ago.  At the time, I was offered the option of having bilat.prophylactic mastectomies, and wish now that I had had them, but I opted instead for yearly MRI screening.  Last June, the MRI came up positive on the left, and I elected to have a mastectomy, instead of lumpectomy, to avoid radiation.  My sentinel node was positive, but the other 11 nodes were negative.  My oncotype came back at 33, and pathology showed extensive lymphatic vessel penetration, so I had 8 cycles of chemo (4 AC+ 4T), and am currently undergoing radiation, which I find incredibly creepy, and I'm resisting like crazy (but still doing it).  I've completed 22 out of 33 treatments, and I did a ton of research before agreeing to it.   Because of the mastectomy, my risk of local recurrence without rads would "only" have been 10-15%, even with all the chemo; but with radiation that risk is cut approximately in half.  I really, really didn't want radiation for all the reasons set forth above (heart, lungs, potential for other cancers, etc.), but I decided that once I accepted the chemo, the smart thing for me was to not leave loose ends lying around, so I went ahead with it.  I guess I'm not sorry, really, although I'm having a lot of skin issues, burning and itching, and I'm pretty tired by the end of the day.  But I'll say one thing:  it's nothing like as bad, physically, as the chemo was. And a lot of the old horror stories about radiaition date from the days when the techniques were much cruder than they are now.  And when I discussed the issue with my radiation onc., the thing that stuck out for me was her comment that they don't have a lot of good treatment options for a local recurrence in the chest wall.  I think that comment was what decided me on going ahead with rads.  I don't think that waiting and carefully watching will provide a whole lot of protection against a local recurrence, and who knows where it will be?

Based upon a 10-year study from Mass General in Boston, that was published last May, I was told that because of my age, ( 71 ), and the size of my BC, that radiation would not make much difference, and that I did not have to go through it. At the time, I was over the moon, but now I wonder far too much if I made the right decision. Apparently, the Boston study showed that I would be carried off by "something else", not necessarily BC.

I started Arimidex, became deeply depressed after 4 months, and was switched to divided-dose Tamoxifen last week. The presence of a benign, post-radiation menigioma in my brain is not adding to my peace of mind, either. I guess I'm really bewildered and on major overload. Anyone else out there with a meningioma?

paamboli

I too wondered if radiation was really necessary given that I had a BMX and almost 12 months of chemo, however my radiation oncologist informed me that after reviewing all the aspects of my case - the type of my cancer, tumor prior to receiving any chemo estimated at around 10cm, multiple lymph nodes involved, did not get clean margins with MX and the fact that I am pre-menopausal - I had at least a 50% chance of local recurrence without radiation. She explained that after completing radiation, I will have reduced my chances for local recurrence by 70%, so that makes my overall chance for local recurrence less than 20% now....accepting radiation treatments reduces chances for local recurrence very significantly so I am not sure why anyone would not accept this treatment if it is appropriate for thier situation. I am receiving IMRT which allows for modifying the radiation beams to minimize exposure to vital organs. I do have some burning at this point in the treatment, but it's very manageable and I know my skin will heal eventually. I am prepared to take this minor discomfort now and know that I am doing everything I can do give myself a chance to survive stage IIIC breast cancer. For anyone considering not accepting radiation, please re-think your decision. Any treatment that we can receive to better our chances in the fight against recurrence of breast cancer should not be overlooked or not be considered for fear of damage to other organs. There is such great technology available now to make radiation much safer than it used to be so do your research and ask tons of quesitons of your radiation oncologist before you dismiss the idea.

MrsChorlton, glad to see you posting !  Did you get the final path report back yet? And was the surgeon able to remove the biopsy track?

Grannydukes, doctors are used to patients asking "if I were your mother, you sister, your wife..." and almost all of them will answer yes to that type of question and those that don't find a way to dance around it. I've seen it asked by patients and answered by doctors many hundreds of times. They really can't answer any other way even if they wouldn't advise a particular treatment to someone important to them. That question is not a very good tool for patients to use in deciding whether or not they really need a treatment being recommended.  

I chose not to have any radiation. I had very wide margins [10mm -16mm as I instructed the surgeon to cut unconservatively as scars and cosmesis were non issues for me] was at extremely low risk of recurrence so please be extremely careful when anyone is quoting general stats about the risk of BC recurrence as they comprise all cases lumped in together. For example, my risk of recurrence was less than 5% without RT and with RT I only got a measly 3% benefit, and my risk of death from breast cancer is less than 1%. I am more likley to die from 4 other causes first!Mind you - it took ages of pressure to get these facts out of the Radiation Oncologist. I was also one of the ones whose Oncologist warned me the greatest danger I faced was over treatment, so in effect he primed me to be sceptical and probing with all the other cancer specialists I met. 

Be  super careful about taking on board broad based stats.

The ones you must insist on are those that relate to your histopathology and other results pertaining to you. 

Second, I get furious when I read about Drs saying to patients you WILL have a lumpectomy with RT or a mastectomy! Outrageous. It is blackmail pure and simple.Patients are art such a powerd disadvantage as if you confront them prior to surgery about this outrageous abuse of patient consent, then you run the risk of them chosing not to perform the surgery on you. 

I have a clear response to being blackmailed  - I say yes I will have the lumpectomy thank you very much, implying I have also opted for the RT, but in truth I reserved my decision on RT. I get copies of all my histopathology and other reports, then using it start asking the Radiation Oncologist a lot of hard questions about the true benefits of RT versus disadvantages, as they relate to my personal situation and then not have RT if you are not convinced.If you are convinced then have the RT. Its your body and your decision.

This  Dr is effectively blackmailing you into having radiation via these coercive statements.I actually consider this an abuse of the Dr/patient relationship.

What Drs should say is they recommend this or that treatment and give reasons why, then it is your body and your decision. The only exeception is emergencies and/or when you are incapable of giving informed consent. 

That being said, when we take control of our bodies we also need to be responsible for the results.

Your Dr does not have the legal power to drag you physically to the radiation centre and tie you down or drug you into compliance. That is called assault and false imprisonment and constitutes a criminal and civil offence. No reputable radiation practice would permit it. 

So simply indicate you will go along with the lumpectomy + RT and then after surgery, do your research and make up your own mind. If you want to preserve your existing relationship with your Dr then you need to ensure you have appropriate medical citations and research backing you up and let the Dr know you respect them, want an ongoing relationship with them BUT you need to be in a medical partnership - not a dictatorship of one!  

Have you had any tests on your heart to see if it is damaged?  My cardio told me radiation can cause heart valve damage (but rarely) and it doesn;t show up until 10 or 15 years later. I have atrial fibrillation and am worried the radiation will make it worse, but he said no.

I see the radiation onc next week to see if I need it.  My onc said that since my cancer was "almost" one centimeter in size he was recommending radiation.

My radiation therapy did not even work.  5 years after my first Dx I was diagnosed with a new primary, almost exactly at the original site!  Radiation also made it very difficult for me to reconstruct.

bdavis:

I am trying to decide whether to avoid the treatments after my lumpectomy.  I started reading about the radiation after surgery and got scared.   My risk of local recurrence based on population study probabilities is about 30% if I don't do radiation.  Luckily mine was right side (away from the heart).  My primary care doctor is a fantastic dr.  She says she has only seen or heard of a few women who had trouble years after the radiation.   Anecdotally, I have several friends/relatives who had rads and say they don't notice any side effects.   I am puzzling over it, because if I get a recurrence, I will have to have more surgery, at least.   The NYTimes published a piece about how the Canadians found 3 weeks works just as well as the standard 5, and also that some places figured out how to radiate only the breast by having women treated in a prone position.   Misses the organs, apparently, in that method.

http://www.nytimes.com/2008/09/23/health/research/23canc.html?_r=2&oref=slogin 

I will probably end up doing the radiation because I don't want more surgery.  Still thinking about it....

Hello~

I am not sure if I should have radiation or take tamoifen and am looking for some guideance.  Although I had a mastecotmy, drs suggest radiation or tamoxifen because deep margin only cleared by half milimeter.  Had skin sparring, nipple sparring mastectomy for the extensive DCIS with comedo necrois, nuclear grade 3.  Drs said recurrence rate is at 5% and radiation or tamoxifen (take my pick!) would reduce recurrence to 1%.  I keep siding with doing neither because I'm only at about 5% recurrence. But then i feel concerned because 1% is a lot better than 5%.  Just don't know if benefits outweigh side effects since ive never had rad or taken tamox before.  Any advice?  So confusing....tough to make a decision.  Getting BRCA gene tested next month.  Thank you!

I am also on the fence about radiation, and the only technique I would consider is an APBI (accelerated partial breast-they ony zap the tumor bed and a small margin). I can't see the value in damaging 99% of a healthy breast for a tiny low grade tumor. Since most local recurrences are typically near the original tumor, the whole breast approach just doesn't make sense to me!

Studies are showing good results with these techniques, and planning is done with CAT scan so they can aim the beams in such a way as to minimize exposure of heart/lungs/ribs. And the protocol entails 2 treatments per day for five days.

I am 8 weeks post-op (lumpectemy and SNL) and still having tons of nerve pain in my arm, axilla, and breast. So I can't start yet anyway-doing PT now. Since the nerve damage from the op was so severe, I am very concerned about radiation causing even more pain and am worried about the possibility that my present condition could become permanent. I am not sure if the risks are worth the benefit for me. That having been said, if I had experienced a more normal post-operative course, I would have been done with rads already!

These are difficult decisions, and very personal. Ultimately, I think we all have to do what feels right for us!

I just remembered - my surgeon did mention a radiation treatment where something was inserted (during the surgery) and it would stay in a few days in order to irradiate the breast.  He said I wasn't a candidate though---

You know, after the diagnosis I was so overwhelmed that a lot of things that were said to me simply did not register!

These techniques are relatively new and not widely available. A large multi center trial has just been completed and the results have not yet been published, however, there are a lot of very positive results coming from studies with smaller cohorts of patients.

There are several new techniques:

Brachytherapy = Mammosite/Savi These are implantable devices that deliver radiation to the tumor bed. Treatment is done on an outpatient basis- 2 times a day for five days. Then the device is removed. Treatment w brachytherapy is an option for a definitive subset of patients:

3d CRT - This is external partial breast radiation done with CT planning. Twice a day for 5 days for women with smaller/early stage tumors.

IMRT (Intensity modulated radiation therapy) - similar to the 3D method, it uses more beams to target the tumor bed area.

Some centers are even offering intraoperative radiation (IORT), which is an interesting concept. Radiation is delivered while you are asleep after the lumpectomy.

There are pros and cons with all of these alternatives, but it is definitely worth looking into.

If anyone is interested in reading the studies, you can run a search on any of these techniques on PubMed - http://www.ncbi.nlm.nih.gov/sites/entrez