Has anyone else opted out of radiation?

Anonymous

I was diagnosed with DCIS, had the surgery, and then had to have a re-excision to achieve clear margins. When my surgeon went back in, she found a little more DCIS, but was able to achieve 3mm of a clear margin. I just met with the radiologist oncologist. She said due to the characteristics of my DCIS, I wouldn't have needed the radiation, except for the fact that my surgeon unexpectedly found a little more than what she thought was originally there. She said I was in a grey area for needing radiation and suggested it as a precaution. It would be 33 treatments...five to the exact area and 28 to the full breast, which seems like a lot! I have been afraid of the radiation all along, due to the fact that it is on my left side and although it is considered safe to the heart, I am skeptical. I will not be taking Tamoxifan either. Has anyone else decided to risk rejecting the radiation treatments? I am not sure what to do. Too bad it has to be all or none.

Sunone

What are the other characteristics of your DCIS - I was told to have radiation because I was grade 3 with comedo necrosis. The rad onc said if I had a lower grade without the comedo necrosis then they would have been comfortable with just future monitoring. I am having 25 rad treatments with no boosts.

momzr

I had a diagnosis of DCIS -- also 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 a little over one year 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 like you, I was sort of in a 'gray' area on rad treatments) 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 am now back to a yearly bi-lateral annual screening mamms on both breasts which I will schedule again next summer.  While I do not feel I am out very far from original diagnosis, so far, so good in my particular case.

MarieK

I'm in the same boat...

My oncologist told me "maybe" radiation but we'll see what happens after chemo.  I'm coming up for my 3rd chemo infusion (out of 6) so I will ask him again his thoughts on radiation.

I do not want radiation - my IDC was on the left as well so I'm worried about damage to my heart and lungs. 

 BUT also the limitation of reconstruction after radiation.

From what I understand having radiation rules out implants....

Anonymous

Thanks, everyone. My DCIS was originally thought to be small and still was considered small (under 1 cm), even after disccovering a bit more during the re-excision. It was a lower grade with some necrosis. I was really surprised when the rad onc told me she would have sent me home if not for for the small amount of DCIS found after the re-excision. What she is suggesting (33 treatments) seems like a lot considering it is either that or nothing. Momzr, you are lucky that they gave you the free pass! They are still suggesting I do the radiation AND Tamoxifan (which I don't feel is worth it for me, as I am drug sensitive.) At the same time, I am afraid to do nothing, since I am in a gray area and they have suggested the treatment. Some people choose the most aggressive treatment, but I have always been skeptical as to the side effects and long term damage. Is the risk of this coming back as DCIS or possibly invasive bc, worth avoiding the possible damage from the radiation? There is actually an article on this site titled "Left-sided breast cancer radiation ups heart risk." It scared me to death! 

VinRobMom

Go with your instinct.  It doesn't sound as if you had comedo necrosis.  That is the most significant factor with regard to the lesion needing rx to prevent recurrence.  The size isn't nor the margins. 

SJW1

Check out the Van Nuys Prognostic Index. It is a predictive test of if you will need radiation or not. It assigns points for the size, grade and size of our margins. It also factors in your age.

I opted to not have radiation after my surgery for DCIS. My score was low enough to opt out of radiation as my risk of recurrence was only about 4 percent. Since radiation reduces your risk by about 1/2, it did not make sense to radiate me for a 2 percent gain. 

Please send me a private message if you would like to discuss this further.

Best wishes,

Sandie 

Janets1

My small DCIS (.65cm) was high grade comedo necrosis estrogen negative so I am scheduled to begin rads next week (left side) 28 treatments, no boosts thanks to good margins. I am worried but willing to do what is necessary to bring my recurrence rate down. The machine at my hospital of choice needs to be replaced, so I am starting with a brand new radiation oncologist at another hospital. I've had 3 opinions and all are the same as far as treatment (although only one path report which I feel fairly comfortable with as it is a reputable lab and they have many levels of checkpoints). I feel so healthy I just hate to subject myself to rads but am afraid I would kick myself 10 years from now if it came back as invasive. Wish I had the resolve NOT to do it but am too afraid so off I go on this journey!

MarieKelly

I had a small 1 cm tumor that was 40% grade 1 DCIS and 60% grade 1 IDC. Had a lumpectomy with very wide margins, biopsy tract removal and single node removed for a SNB back in 3/2004 just after I had turned 49, and then no further treatment...refused radiation, tamoxifen and arimidex. I'm alive and well with no recurrence thus far, 5 years and 8 months later. My tumor was in the left breast and there was no way in hell I was going to assume even the slightest risk of cardiac or lung damage from radiation. I felt the very minimal potential benefits did not outweigh the risks.

lanesue

Diagnosed May 2008. DCIS  Biopsy  2.5 mm . Had lumpectomy, apparently the biopsy got it all because the path report after lumpectomy was negative for any DCIS, etc.  Radiation is the 'standard of care" but I opted NOT to go that route.  Have had 2 checkups since then, all clear.  I just couldn't buy into the radiation  in my situation.  Best of luck and many blessings.

Hindsfeet

December 2007 and December 2008 I had lumpectomies for DCIS. I chose not to have radiation or taxomifin. After my own personal research I felt comfortable about not getting treatment, even though I had high grade como type dcis...twice (multifocal). There were moments when I wondered if I made the right decision. If it happens again, it will mostly likely be another dcis dx, and I will probably get a mx.. I do not want to lose my breast. It is a hard decision. I respect those who chose otherwise. I also read that if I had radiation, and it did come back that I would have a 50% of it being invasive. If I did not have radiation it would not be the case. Also I was told that if I had radiation and dcis returned again that reconstruction would be difficult and could be impossible. These were two of several reasons why I decided not to do rads.

Next Monday I am having an mri and I hope this year I am cancer free and do not have to consider more surgery. If the mri says no cancer...it means for the first time in a year, I will be able to truly move on from thoughts of cancer coming back. I am not too concerned as I am doing alternative treatments that hopefully will prevent dcis in the future.

Whatever decision you make, I would suggest adding alternative treatment.

PSK07

I was dx with DCIS in August 2007.  While mine was small, it was grade 2 with necrosis. That upped the risk somewhat. After a 2nd opinion with another rad onc, we decided to go with radiation. Not the most fun thing in the world, but it was do-able and I survived just fine. 

 Contrary to what was said above, having radiation doesn't mean anything so far as invasive with a recurrence. In fact, having radiation will reduce your risk of an invasive BC in that breast.  You have a risk of invasive higher than the woman who hasn't had BC simply because you've been dx with DCIS. 

I was later DX with LCIS in the other breast. Since it presented as a mass, they did a lumpectomy. I started on Tamoxifen as soon as I met with an oncologist - one who specializes in risk and managing risk of BC.  the LCIS brings to me a constant risk of invasive BC, so managing my risk is of utmost importance.  Almost one year on the tamoxifen and everything is ok. I alternate mammos with MRIs every 6 months.

Surgeons cut, oncologists treat. It never hurts to meet with one or two radiation oncologists and a medical oncologist to discuss treatment options as well as your own risk.  They should answer all your questions as well as tell you what benefit (or not) the treatments will have on you and your body.  There are things they can use to limit exposure to heart and lungs and they can show you exactly what is being radiated.  The tools they use to focus the radiation are far better than in years past and have helped greatly in reducing damage to peripheral tissue.

 Whatever you choose, I wish you the best.

Pam

deli

I had surgery on Dec 1 for two small dcis on the right side. I am 49 and premenopausal. I had lumpectomy and breast reduction to both sides. My dcis was grade 3. My surgeon and oncologist said no radiaiton and no tamoxifen at this time. I am just going to be carefully monitored.

ebie

Just thought I'd share with you that I also will not be having any radiation at this time. I was diagnosed back in March, grade III with comedo necrosis, 1.8 cm. However, the dcis was removed during the biopsy, but I still had a lumpectomy, which was completely clean. Because of that, and everything I've read to date, I've decided not to have any radiation or tamoxifen (I am ER+ and PR +). I spoke with my surgeon, surgical oncologist and medical oncologist, shared my views and thoughts, and they agreed that follow-up is 6 months was enough for now. The more I research DCIS, the more I came to realize that the "experts" really didn't know all that much about it except how to find it. That's not to say that I haven't had any second thoughts about my decision, which I believe is perfectly normal. But my gut tells me I'm making the right choice for me, at least for now. I'm also working with a naturopath to change my eating/exercising habits, and that has given me back a sense of control over my health and body that I lost when I got diagnosed.

I also found this article to be very insightful and helpful: http://consensus.nih.gov/2009/dcisstatement.htm

God bless you and grant you the strength and wisdom you need to guide you through this time.

ebarry

Edited

ebie, I' posted earlier as Barry on this thread. I had the same gut feeling as you.

 I opted to watch and wait. I really wasn't concerned about a recurrence. The next year when I had another dcis occurrence, I made the same decision. The difference, the second time around I went to a nauralpath to find out why my body was turning on me. I thought alternative meds would prevent another cancer occurence. I learned a few months back that it takes awhile for your body to find balance, and healing. It's taken years to mess up our bodies and healing the body will also going to take time. When trying to find why and how to get your body back on track, during that time, you could have another recurrence. This is my present concern.

 After one year of holistic health habits and taking care of my thyroid, my body is still compromised. I am not so confident that I'm cancer free. There is a part of me that wishes that after the dcis recurrence, I would have had a mx with reconstruction. After looking a all the options, (I'm still working through this) that for those who are dx with grade 3 should have a mx, especially if they have a recurrence. Keep in mind that not all dcis are the same. My doctor said that my dcis jumps around. My breast wants to make high grade dcis como type cells. Wide margins like I had the first year aren't always a guarantee.

Wednesday I go in for my year mammo. If there is a cause for concern, I'll have to take the big step. I know for sure I am not doing rads. Hopefully I'm clear...nervous.

CTMOM1234

sorry if this is a little off topic -- I didn't opt out of rads, but did opt out of tamoxifen.  Truthfully, rads weren't so bad (30 sessions, finished exactly 2 weeks today and my breast is nearly back to normal) and I like the extra protection. My DCIS was in the left breast, which did concern me because of my heart being on the leftside, but rad.onc. had me lay prone (face down) which is much more heart and lung friendly.

Breast surgeon was pretty adament that I either do mastectomy or lumpectomy + rads., but wasn't as much about tamoxifen. Have seen some pretty convincing stats. about the benefits of rads., so I actually was happy to have them zap away.

Anonymous

Thanks evryone for your help and input. A lot has happened since I first made this plea for help last Novemeber. I took SWalters advice and got the second opinion from the amazing doctor in San Francisco. He used the Van Nuys Prognostic Index to determine I was borderline (leaning towards treatment) for needing the rads. He agreed with me, no Tamoxifen. My surgeon "strongly suggested" the rads, so I decided to do it although I was not comfortable with my decision. After 6 of the 33 treatments, I felt so horrible, that I quit, with the guidance of the San Fran doc. I started seeing a local doctor who practices integrated medicine. After tons of bloodwork, saliva and urine tests, it was determined that I was lacking vitamin D, C, two B's, glutamine (and a few other things) and I was estrogen dominant. I now take high grade supplements and bio-identical progesterone to balance out my small amount of estrogen (I'm 53), instead of getting rid of the estrogen with Tamoxifen. I'm eating organic and read Patrick Quillan's Anti-Cancer book. I was already a vegetarian. I joined LA Fitness and I feel better than ever! So here's the best part! I go back to my surgeon...the one who strongly suggested the rads. She says...you look great! You're probably healthier now than if you never had the DCIS! We'll go with close observation. I get a mammogram every six months and an MRI once a year...both for five years. No matter what path you take, there are no guarentees, so I made the best choice for me and I'm doing my best to keep my immune system in an optimal anti-cancer state...and the rest is in God's hands!

Deirdre1

Thinking about you barry and hoping everything comes back clean next Monday!!!  Deirdre

Anonymous

Barry,I am saying prayers for you! Please let us know what happens tomorrow.

anghub

 I took IORT (intraoperative radation therapy) during lumpectomy but I'm supposed to have an additional 5 weeks of external radiation. My hubby and I are going to meet with the Rad Onc next Friday.

My margins from lumpectomy on path report read as follows:

Margins: DCIS extends to within 2.5mm of the posterior margin, 5mm of the superior margin and 9mm of the anterior margin; other margins are widely free. 

Would you choose to have rads with margins like mine? I'm truly just looking for opinions from all and hopefully from our EXPERT resident Beesie Part of me knows I SHOULD do the additional rads but the other part of me isn't really sure what to ask the rad onc when I see him.

Thanks 

speech529

I have DCIS, grade 3, comedo cells, ER+/PR+...lumpectomy and radiation has been recommended.  Because of my reservations about radiation therapy, my surgeon is just doing the lumpectomy and we will wait for the pathology report to decide the next step.  I am afraid of rads but afraid of not doing it.  I am afraid of ruining my breast, underlying tissue etc from rads.

ebie

Hi Speech 529,

I know exactly how you feel. Like I indicated in my post above, I also opted out of radiation (had a lumpectomy that was clean), but my docs still recommended it. Like you, I had more fear of the long-term side-effects of radiation (I'm only 41 with two small children). I chose to take the alternative path for now by visiting a naturopath and following her guidance. Although the changes to my lifestyle are not easy right now, I know that in the long run they will be for the best and, like anything in life, I'll get used to it. I also feel much more in control of my body/health now than I did before. Good luck to you. I know the choice is not an easy one. God Bless.

Sue100, I'm so happy for you. God bless you and keep you strong and healthy!

I wanted to share with all of you a few tips (that you may already be aware of) that my naturopath gave to me. They are easy to follow, and will help us all to decrease our long-term risk.

1. ELMINATE SUGAR FROM YOUR DIET. Starve the cancer cells source of fuel: glucose. Normal cells use fats and proteins as well as glucose for fuel. A low sugar diet further prevents cancer via allowing the immune system to function normally, it allows an aklkaline environment, and inhibiting prostaglandin E2 production responsible for tumour growth. Avoid glucose, sucrose, fructose, maltose, cane sugar, wheat, white potatoes (sweet potato is excellent) and bananas. 

2. Avoid all red meat.

3. Try to buy organic whenever you can for fruits and vegetables.

4. Exercise 40 - 60 minutes per day, moving your armpits and breasts to improve lymphatic circulation and estrogen metabolism. Yoga is an excellent exercise and so is rebounding (jumping on a small trampoline). 

5. Choose a bra that does not have an underwire, is loose fitting, and when you take it off, there are no red marks on your skin. Wear bras less often.

6. Practice light breast self-massage several time weekly.

7. Avoid using antiperspirants and cosmetics containing aluminum, lead, phthalates, or parabens.

8. Do not store your food in plast or drink from plastic bottles; avoid canned food with plastic (the lining of the can).

9. Do no use your microwave to heat up/cook food.

A great website that I found to find out exactly what is in my cosmetics is www.cosmeticsdatabase.com. You'll find almost any product, from lipstick to perfume, to spf.

Many blessings to you all!