Recent DCIS in NYC

[haagr]

I am reaching out to discuss treatment of DCIS across the pond. I was diagnosed with stage 0 high grade on my left side. Had a lumpectomy 6 weeks ago with clean margins. Radiation has been recommended to prevent a recurrence. I am very concerned about radiation to my heart as I am in my 60s and have a family history of heart disease. I heard about a different form of radiation, Proton therapy, that controls depth and stray beams to better protect the heart and adjacent areas. It isn't widely used in the States yet and there is little data I can find on it's efficacy for breast cancer. Has anybody had or investigated Proton radiation?

Thank you in advance

[Hidden]

Sorry I cannot help but wish you success in your search. It is not widely used here either. I think there is only one place which does it in UK xx

[haagr in reply to Hidden]

Thanks for responding Chrissie2. I wish you strength, courage and health! 🇬🇧🇺🇸

[Moirs1964]

I don't know anything about radiation but I had the same diagnosis as you. I had chemo, a mastectomy and herceptin but no radiotherapy. Best of luck with your search

[haagr in reply to Moirs1964]

Thank you for your thoughtful. response. In the US, the decision to perform a mastectomy or lumpectomy is generally based on the size of the lesion. For small lesions, the standard of practice is breast conserving surgery (a lumpectomy) followed by radiation to prevent recurrence. If there is lymph node involvement, chemo is recommended. Tamoxifen or an Aromatase Inhibitor are recommended for ER+ lesions. They only use hercrpton fir HER2 + lesions.

Part of me wishes I had been offered or opted for a mastectomy because my recurrence rate would have been 1% and I would not have needed radiation.

Best of luck and good health to you.

[AppleL]

Hi. I found an article (2014) on the UK's NHS.uk website that explains proton therapy and also highlighted that we were looking to build some specialist centres back then. The link wont post on here so go to the site and search on What is proton beam therapy? also this one Proton beam therapy 'effective' and 'causes fewer side effects'.

Also this from the Loma Lindas University in the US (California) “The size of the radiation area is reduced significantly, lessening radiation exposure to the heart, lungs and other parts of the body. Proton beam allows us to do this better than any other type of radiation treatment,” Dr. Bush said. medical-center.lomalindahea... May be worth getting in touch with them.

[haagr in reply to AppleL]

Thanks for your response and taking the time to research my question.

There are over a dozen Proton Centers in the US mostly used to treat pediatric, brain and prostate cancers for about 20 years. Only recently have they begun to treat breast cancer with it to spare the lungs and heart. Since this treatment option is only in use for breast cancer about 5 years, there are no published data on how effective it is.

There are no Proton Centers in NYC (Unbelievable). One is being built but won't be open for years. The closest one to me is 90 minutes away. I am going for a consult tomorrow with a Radiation Oncologist who refers some patients there if appropriate. I have no idea if my health insurance would even cover Proton Therapy.

I believe that Loma Linda was the first to use proton therapy for breast cancer in the US. I wish I could speak to someone who had this treatment.

I'll post again after tomorrow's consult.

Thanks again!

[Jennymary]

Hi, I had lumpectomies, both breasts, October 2013, no chemo, 3 weeks radiotherapy, and yes I was told it may nick my heart giving me heart problems in later life, none so far, mammograms in 2014/15/16 all clear, I wish you luck x

[haagr in reply to Jennymary]

Continued good health to you!

[Debs1962]

I opted to have mastectomy instead of lumpectomy as I didn't want to have the radiotherapy, more to do with higher risk of lymphodema in the arm, and skin problems, didn't know about the heart thing!

I am now on letrozole as I am ER +

Good luck xx

[haagr in reply to Debs1962]

My surgeon never put having a mastectomy as an option for me as my DCIS was small, only 7mm. But she never discussed the serious potential complications from RT until after my lumpectomy and referred me to a radiation oncologist. Had she had this conversation with me prior to surgery, I may have elected for a mastectomy and avoided my radiation dilemma all together.

[haagr in reply to Debs1962]

Because my lymph nodes are not involved, they won't be radiated so lymphedena is one side effect I will be able to avoid from radiation.

[tilerk]

I am starting radiation next month and am also in the U.S. I am not doing the proton thing, but I was told that the machine that does the radiation will time the on/off with my breathing so that the heart is as far away from the radiation as possible, as filling the lungs pushes the heart away from the breast (depending on which side is being done). Good luck!

[haagr in reply to tilerk]

Thanks so much for your response. What city are u in? Where are u having the RT?

If proton RT isn't an option for me and my Oncotype places me at high risk for recurrence I will do conventional photon RT in prone position with the same type of breathing monitoring that you will be doing. But for every stray gy (the radiation measurement) that reaches the heart there is a 7.4 risk of a cardiac event. The math is frightening. Just 4 gys is over a 30% risk.

Good luck to you!

[tilerk in reply to haagr]

I am in Cincinnati, going thru trihealth, I work for them and they truly have a great cancer institute. I haven't researched RT very much bc I am focused on making it thru chemo. I only have 1 more treatment left and I swear I'm going to do backflips when I'm done! Anyway, I'm meeting with the rad oncologist in a couple weeks, and I'm definitely going to ask him how much radiation my heart will be receiving. That is truly scary. Thanks for the heads up!

[haagr in reply to tilerk]

That's what was recommended for me. I'm supposed to start 1/9 but I'm panicking. Thinking of backing out even though I've already done the simulation and been tattooed.

R

[haagr]

This is a follow up from my previous post. I went to Sloan Kettering today for an RT consult with the doc who is in charge of their proton therapy referrals. I liked him. Very different opinion from NYU. Said do not do prone. Thinks he can almost fully protect my heart without proton therapy. Because of the location of the lesion he can get better access if I'm supine (on my back) and still can protect my heart with breath holding. Said new studies show that prone is not as effective in heart protection as supine with breath holding. I guess I'll be doing some more research this weekend.

But for now I'm much more at ease and for the first time since being diagnosed I truly believe that I will be alright!

[haagr]

This is another follow up on my previous posts. I went for my third radiation therapy consult. Three consults, 3 opinions. Two recommend the prone position. One will complete therapy in 3 weeks by adding the boost daily. One will complete therapy in 4 weeks with the boost being done during the fourth week. The third recommendation is to use breath holding in the supine position (on my back) over 4 weeks. Again the boost would be in week 4.

Breath holding seems to be an up and coming technique to minimize radiation to the heart. There is little information on this. Has anyone had it or can refer me to a source on its efficacy?

[tilerk in reply to haagr]

I am doing the breath holding technique while lying on my back. They did a test run where they marked the area for radiation and then scanned me while I was holding my breath. They could then see that the radiation will not touch my heart. The institute I go to is one of the best in the country and I trust the Dr's there. I feel very comfortable with this, but in the end you have to go with your gut. Sorry this post is late, but I hope it helps!

[haagr in reply to tilerk]

Thanks for your reply Your timing was perfect. Last week I went for the breath holding simulation and was tattooed. I am going for RT at the best cancer center in NYC for this because they were the only ones who were offering this technique to me. This is not where I had my surgery.

I do not like the Radiation Oncologist. He was arrogant and unsupportive when I tried to discuss that I was frightened. But his credentials for radiation are impeccable and I have to keep telling myself that I don't need him to be my friend, just the doctor who can provide the safest radiation possible for me. I spent last weekend crying and second guessing my decision to even have RT for a 16% chance of it recurring.

I am meeting with him next week to go over the plan and to be sure the radiation will not enter my heart directly. I do understand that there can be minimal stray radiation that is unavoidable. Praying that I haven't made a mistake about this. Only time will tell. Hope I have the strength to see this through and not back out.

Have you started RT yet? If so how many treatments have you had? Have you had any side effects?

R

[tilerk in reply to haagr]

I'm sorry to hear that your Dr. isn't more supportive. It's too bad they don't hand out personalities with medical degrees! I start RT on 1/3 and I have 5 weeks of regular treatments and then a week of boost radiation. I will let you know how it goes.

My friend just finished rt a few months ago. She said fatigue and dry skin like a sunburn were the only side effects during treatment, but after she was done, she had some pain in her breast, not horrible, but annoying.

I don't think that there is any "right" decision here. You know your body best and you need to make the decision that will let you sleep at night. Have you thought about checking with a cardiologist? I would be interested in knowing how frequently they see heart issues related to RT.

Kristie

[tilerk in reply to haagr]

I'm 2 weeks into rt and so far so good. No side effects other than possibly fatigue. Have you started yet?

I can't get over how quick it is...after spending hours at chemo, getting in and out in 5 mins is so nice!

Hope all is going well for you!

[haagr in reply to tilerk]

Glad to hear u r doing well.

I just finished my first of 4 weeks of RT. So far so good. It's a 2 hr commute each way for me so I'm exhausted from that alone. Hopefully the RT fatigue will not be too bad. I'm expecting that to hit sometime next week. My skin is holding up and hoping it will continue to.

The treatment itself is just about 2 minutes after being positioned.

Thanks for thinking of me.

Be well

R