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Topic: To choose radiation therapy or not having one

Forum: Just Diagnosed — Discuss next steps, options, and resources.

Posted on: Aug 14, 2011 11:44PM

NWMom wrote:

Hello,

I am new to this forum and web site. I am 43 years old. I was diagnosed July 28, 2011 and it was a shock to me. I never imagine having cancer at my age. I have 4 years old boy and really worry how long I will live to take care of him.  My pathology report says DCIS, solid, comedo and micropapillary pattern, high nuclear grade, necrosis present, calcification present. ER+. The size of calcification is 4mm. The report didn't say anything about PR or HER. I saw the surgeon the next day after I was given the bad news. She gave me a choice of lumpectomy with radiation and Tamoxifen as option, or mastectomy. She explained that she wanted to have 1cm margin during surgery. I am fine with having lumpectomy but unsure about radition. When I met with radiation oncologist, I asked her how radiation therapy worked. She said it damaged DNA of cells. I asked if radiation can cause cancer. She told me because cancer are created by the same process- damaging DNA- yes it can cause cancer. But the benefit outweighs the risk. I did not ask her for more information on how risk/benefit was studied/defined. I am not quite sure how this works.   I am scared of radiation. When I had chest x-ray as a child (I had quite a few of them to screen for TB growing up in Asia), I did "feel" it effected me. I remember feeling warm on the chest after radiation, or strange feeling on the chest, while people told me I shouldn't feel anything from x-ray. I wonder if the risk/benfit of radiation therapy would be different depending on the person. And if there is a way to tell if x-ray would effect me more, ie. increasing the chance that my healthy cells will turn into cancer more than average person. The nurse coordinator said standard of care in my case if I choose lumpectomy is to have radiation therapy as well, because without it my chance of having it returning is 30%. Because of my age I have higher risk and should have radiation. But I wonder when someone has cancer returning, it seems there is no way to know if it's strayed cancer cells that are left from treatment, or the new one forming due to radiation?  What kind of thought process did you go through when choosing to have radiation, or not the have one when it is recommended to you.

Thank you so much. I am stressed out and really scared. I am glad to find this board.

Dx 7/28/2011, DCIS, <1cm, Stage 0, Grade 3, ER+
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Posts 1 - 21 (21 total)

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Aug 15, 2011 02:03PM cycle-path wrote:

I was also freaked out about radiation, and I was able to have IORT (Intraoperative Radiation Therapy). Not everyone qualifies for this, and your young age could be an issue, but it's worth looking into. It's less time-consuming, has far fewer side effects, and is believed by many to be more effective in stopping cancer than traditional radiation.

breastcanceriort.org

Not every hospital or breast center does it, but in your area there seem to be several including Seattle Cancer Care Alliance, University of Washington, and Swedish Hospital. 

I am an Uppity Woman. Don't like my posts? Put me on IGNORE. Dx 12/10/2010, DCIS, 1cm, Stage 0, Grade 2, 0/2 nodes, ER+/PR+
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Aug 15, 2011 02:53PM , edited Aug 15, 2011 02:55PM by jogem

I had my lumpectomy last week and will be having radiation  as well .

I know 2 women who had radiation for breast cancer over 10 years ago ( early 40s ) and so far they are still cancer free today. . I am told radiation is even safer today .

I am quite worried , but the recurrence risk is higher without and I have decided to trust my onco .

 Lumpectomy  11/08/2011

Diagnosis 12/07/2011 IDC 1.2cm , stage 0 , Grade1 , 0/3 nodes

Jogem
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Aug 16, 2011 04:07AM rn4babies wrote:

My diagnosis mirrors yours. Mine is also 4mm. I will have a lumpectomy on September 9th followed by whole breast radiation and Tamoxifen. My mother and aunt had radiation about 11 years ago and they have been cancer free since. Thats part of the reason I chose to take this route. Only you can make the decision on your treatment. Good luck in whatever you choose!

First DX of DCIS on 7/7/11 of left breast. Lumpectomy with rads completed on 12/14/11. First f/u mammo Feb '12 revealed new primary of 2 areas in right breast IDC and ILC. Lumpectomy on 3/23/12. T/C x4 5/15-7/16. Rads 9/5/12. Oncotype score 27. Dx 7/11/2011, DCIS, <1cm, Stage 0, Grade 3, ER+/PR+, HER2- Surgery 9/8/2011 Lumpectomy: Left Radiation Therapy 10/26/2011 Dx 3/6/2012, IDC, 1cm, Stage IB, Grade 3, 0/2 nodes, ER+/PR-, HER2- Surgery 3/22/2012 Lumpectomy: Right Chemotherapy 5/14/2012 Cytoxan, Taxotere Radiation Therapy 9/4/2012 Hormonal Therapy 11/11/2012 Hormonal Therapy 9/17/2013 Arimidex
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Aug 16, 2011 04:23AM AnneWisc wrote:

NWMom, I also had a DCIS with some of the same factors as you.  I had partial breast irradiation.  It partly depends where your lesion is, but you might be able to do something other than whole breast radiation.  Ask to speak to a radiation oncologist BEFORE you decide to have a lumpectomy, and ask that person to explain ALL the radiation options.

A problem with mastectomy is lymphedema.  The more tissue is removed, the greater the chance of this happening.  Also if you want reconstruction, there are many things that can go wrong.  So I would not rush into mastectomy thinking it is the safest alternative.  

Good luck.  Post as many questions at breastcancer.org as you want.  The support here is incredible. 

Dx 5/15/2011, DCIS, <1cm, Stage 0, Grade 2, ER+/PR+
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Aug 16, 2011 04:35AM Leah_S wrote:

Anne, there is definitely a risk of lymphedema with lumpectomy. The LE is caused by the removal/radiation of lymph nodes, not the removal of the breast itself.

There is loads of info about risk reduction of LE in the LE forum. Almost all of us here are at risk so it would be a good idea to read what's there.

Best of luck.

Leah

Dx 11/3/2008, IDC, 1cm, Stage IV, Grade 3, 6/17 nodes, ER+/PR+, HER2-
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Aug 16, 2011 06:22AM Momma wrote:

NWMom, here's what I've been told about radiation. My daughter was diagnosed last Oct at age 27; stage 1, grade 3, no lymph node involvement, ER+/PR+ (she's doing very well). What her team told her was that they would recommend a MX and chemo, no radiation. The reason being that they are concerned with the long-term effects (20 to 25 years) may cause other cancers; not to mention some of the lasting side-effects such as bone density loss. Because of her young age they did not want her to have radiation. It's not as much an issue when you're older but the concern is receiving it at a young age. So I guess it's a personal choice. Everyone's case is different and everyone's comfort zone is different.

Good luck with everything.

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Aug 16, 2011 06:28AM , edited Aug 16, 2011 06:30AM by calamtykel

If you go with a lumpectomy, you will pretty much have to have radiation to zap any cells that are left.  Otherwise you may be in this same boat a couple of years from now.  They say that a lumpectomy plus rads = mastectomy as far as survival.  However, I was told that a lumpectomy had a 8-14% recurrence chance in the same side, while a mastectomy had a 3-5% chance recurrence.

I am one of those who was totally eligible for a lumpectomy and opted for a total mastectomy to avoid the radiation.  I did not want to put my body through more after chemo than I had to. And having four kids, going for radiation every day for 5 weeks seemed daunting.

It's a personal choice.  Also, if you have radiation, you can never have it there again, in that same side.  

It all depends on how important your breast is to you.  I understand - we're  young (I was 41 last yr on my diagnosis).  But for me, I'd already breastfed my four kids - having it off was not a big deal to me.  My breast surgeon argued with me, but I made my choice and have not regretted it for one single day.  But for other women, it would be extremely traumatic to have to have a mastectomy when they could have had a lumpectomy. 

Just be aware that if you have the lumpectomy, you will need to have radiation. Not to do so could have dire consequences. 

"But when he saw the wind, he was afraid and, beginning to sink, cried out, “Lord, save me!” Immediately Jesus reached out his hand and caught him. “You of little faith,” he said, “why did you doubt?” Matt. 14:28 Dx 6/12/2010, IDC, 1cm, Stage IIA, Grade 2, 2/12 nodes, ER+/PR+, HER2-
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Aug 16, 2011 06:39AM calamtykel wrote:

In answer to your other question, yes, a new breast cancer could be tested to see if it's a new primary tumor or a recurrance of the original. 

I agree with Leah - a mastectomy doesn't increase your risk of arm lymphedma - it's the removal of lymph nodes that does and your doctor may want to remove your sentinel node to test it for cancer, as that's pretty much standard for staging purposes.  I had a mastectomy on one side and a breast reduction on the other side.  The reduction side was as much, if not, more painful than the mastectomy side -so it seems that surgery is surgery and both require healing time.  I have seriously considered and still am, having the other one off to avoid the radiation of mammograms, and the trauma to that side.

"But when he saw the wind, he was afraid and, beginning to sink, cried out, “Lord, save me!” Immediately Jesus reached out his hand and caught him. “You of little faith,” he said, “why did you doubt?” Matt. 14:28 Dx 6/12/2010, IDC, 1cm, Stage IIA, Grade 2, 2/12 nodes, ER+/PR+, HER2-
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Aug 16, 2011 06:41AM Leah_S wrote:

I would like to add something to what Kalamtykel said about recurrence. The stats for local recurrence after lump that she quoted (8-14%) is for lump plus rads. Lump without rads has a local recurrence rate of approximately 30-35%. So the consequences of doing that could indeed be dire, especially since frequently a local recurrence of DCIS is IDC - in other words, it comes back invasive.

Best of luck. It's not an easy decision; none of this is.

Leah

Dx 11/3/2008, IDC, 1cm, Stage IV, Grade 3, 6/17 nodes, ER+/PR+, HER2-
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Aug 17, 2011 08:37AM Calico1 wrote:

Hi NW Mom, I'm so sorry you are going thru this too. You've gotten great advice already, but I thought I'd add my experience too. I was diagnosed with DCIS in May but had *two* tiny spots and the standard of care is Mastectomy when there's more than one spot. Had there been only one I still would have opted for Mastectomy over Lump+Rads and I'll echo what Calamtykel said. Even though the "survival" rate is statistically similar, my biggest concern being 40 was the recurrence rate, so Mx it was. If I opt to take Tamoxifen and the meds side effects don't outweigh the benefits, I'll further cut my recurrence risk. 

 As far as surgery, I opted just to do the DCIS side and keep my "good" one. The PS gave me a nice reduction/lift on the good side and it looks 20 yrs old again and pretty darn cute! Ha! ;) I did the tissue expander on the Mx side. I am only 3 weeks out from surgery and am doing GREAT-everything has been textbook and my recovery and healing have been swift and relatively easy.  It really was just a blip on the radar of my year, even though back in May at Dx, I thought it was the end of my world... 

 Good luck to you. The time between diagnosis and finding your team of doctors was the WORST, most anxiety filled time. Once I had a "plan" and a surgery date, it started to improve. And right after surgery, I cannot explain the emotional weight that was lifted from me. Focus on putting together a team of terrific docs that you have trust in and click well with. Dont be afraid to meet with as many as it takes. Michele

Dx 5/26/2011, DCIS, Stage 0, Grade 2, 0/1 nodes, ER+/PR+
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Aug 17, 2011 11:00AM Psal70 wrote:

NWMom, I am sorry you have to go through this but believe me you will get through it.

IF your team recommends radiation then do it and yes teh benefit outweighs what might ot might not happen in the future. I had a MX, chemo and radiation and I said yes to all the treatments they offered me, eventhough my PS said that radiation will damage my skin and the reconstruction results would probably fail but at the end it all worked out for me.

Good luck with your decision

Dx 8/4/2009, IDC, Stage II, HER2+
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Aug 17, 2011 10:41PM CTMOM1234 wrote:

I was given the option to have either a lumpectomy+ rads or mastectomy and there has not been 1 single day that I've wished I'd chosen a mastectomy over the lump+rad. path I took. I'm also in my 40s and found rads to be much easier physically than I'd mentally worried about.

 I'm a year + out and everything looks and feels pretty much the same as before this whole horrible journey began. Full sensation, wearing the same bra, all me and all natural. These decisions are not easy and quite personal. Good luck and may you find inner peace with whatever you do. 

When I grow up I want to be an old woman. Jan'10 lump.for grade 2 DCIS;SURPRISE1.75mm grade 2 idc in path report,stage 1a; Jan'10 snb 0/3 nodes; Mar-Apr'10 rads: 25 full+5 boosts prone position, stickers/no tats; May'10 declined tamox. Doing fine. Dx 11/1/2009, ER+/PR+
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Aug 18, 2011 01:27PM Moderators wrote:

NWMom - there may be some useful information for you in Breastcancer.org's Radiation Therapy section. There's info there on how radiation works, when radiation is appropriate, and what to expect.

Hope this helps!

--The Mods

To send a Private Message to the Mods: community.breastcancer.org/mem...
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Aug 21, 2011 07:26PM SJW1 wrote:

NWMom,
When I was diagnosed with DCIS in 2007, I chose to omit radiation after my lumpectomy, because it can only be used once. This was after consulting with Dr. Michael Lagios, a world renowned DCIS expert and pathologist, who has a consulting service that anyone can use.

He calculated my risk of recurrence without radiation as only 4 percent based on the Van Nuys Prognostic Index. Knowing that helped me decide that the risks of radiation were not worth the 50 percent reduction in recurrence it typically gives.

Please feel free to send me a private message if you have any questions or check my website at:

sites.google.com/site/dciswith...

Best,
Sandie

Dx 6/22/2007, DCIS, <1cm, Stage 0, Grade 1, 0/0 nodes, ER+/PR+
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Aug 22, 2011 05:08PM cycle-path wrote:

Mods, why doesn't the section you indicated include information about IORT? 

It may be somewhat rare here in the US, but in Europe it's the standard of care for many situations. It should be included. 

I am an Uppity Woman. Don't like my posts? Put me on IGNORE. Dx 12/10/2010, DCIS, 1cm, Stage 0, Grade 2, 0/2 nodes, ER+/PR+
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Aug 24, 2011 08:32AM Moderators wrote:

cycle-path, you'll find an article about IORT (intraoperative radiation therapy) in the External Radiation section linked from Types of Radiation in the Radiation Therapy area of the main Breastcancer.org site.

IORT is also discussed in a research article about a January 2011 report from the San Antonio Breast Cancer Symposium: SABCS 'Sandwich' Therapy Touted for Early Breast Cancer (see the Breastcancer.org Says sidebar).

-The Mods

To send a Private Message to the Mods: community.breastcancer.org/mem...
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Aug 24, 2011 01:02PM , edited Aug 24, 2011 01:17PM by cycle-path

Mods, I know there is IORT info on the site, but why not talk about it (or at least link to it) on the Internal Radiation page, for example? It seems a little silly to make it part of the External Radiation section, doesn't it?

Further: some of the info on the IORT page is incorrect.

"all the doctors and nurses must leave the room while intraoperative radiation is delivered." Not true, because some IORT is delivered via X-ray and personnel need only be shielded as for a normal X-ray.

"Using intraoperative radiation for internal radiation is very new. Only small studies with short follow-ups have been done so far." Not true -- IORT has been available since 1918.

"Intraoperative internal radiation hasn't been compared to the standard of care: whole-breast radiation after lumpectomy." Untrue.  

"It's very expensive to have a radiation machine and proper shielding in an operating room. Most radiation therapy departments are far away from the operating rooms, so the equipment can't be shared or moved." While it's true that it's expensive to have this, it's also not necessary because some IORT machines use Xray only and no shielding is required in the OR. Also, some IORT machines are highly portable.

The article is out of date and appears to have been written by a MO who is opposed to the use of IORT (probably for personal financial reasons). An updated and much less biased article should be provided, but either way there should be links! 

I am an Uppity Woman. Don't like my posts? Put me on IGNORE. Dx 12/10/2010, DCIS, 1cm, Stage 0, Grade 2, 0/2 nodes, ER+/PR+
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Aug 24, 2011 01:18PM edwards750 wrote:

My BS told me the same thing about 30% because I too thought about NOT doing the radiation therapy. Then I thought okay that is pretty high stats so I went through the 33 treatments and never looked back. We are all different - no one size fits all so you need to do what you think is best. Your dr may not like your decision but after all it is your life. My BS was quite adamant that I do the therapy. My BS is Stage 2 and my oncotype score came back 11 as a non aggressive cancer. No guarantees but I just thought you should throw everything you can at this disease. Again it is your life, your choice just be sure once you make it that you dont second guess yourself. diane

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Sep 12, 2011 01:24PM pil wrote:

What if you have had a lumpectomy on the LEFT breast where rads can damage the heart and lung area?  

This is my concern because I have a floppy mitral valve.

Thank you

Diagnosis: Diagnosis: 5/2/2011, 1-1.9cm-Papillary Carcinoma - Grade 1 - 5/25/11 Lumpectomy, removed 6 nodes. Clear Margins 5 Years of Aromasin therapy. Dx 5/2/2011, 1cm, Stage I, Grade 1, 0/6 nodes, ER+/PR+, HER2-
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Sep 12, 2011 05:14PM msphil wrote:

hello sweetie, I too was 43 when diagnosed and felt all those feelings you are going thru, BUT sweetie, it will be alright take it from me a long time breast cancer survivor(Praise the LORD), I went thru some stiffness and some minor side effects But it is nothing compared to celebrating long term survival, so take it from me and whatever it takes to give you 17 yrs Survival or longer do it and you will look back on these days from the other side , God Bless and keeep HOPE and stay POSITIVE it is better for your health.  msphil(idc,stage 2. Lmast,chemo and Radiation(7 weeks, 5days a week for about 45 minutes)tamoxifen for 5 yrs and LOOK(I,m Still Here).

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Sep 12, 2011 05:20PM MarieKelly wrote:

Pil, I understand your concern.  I had the same type of concerns and also have a mitral valve problem (though not valve prolapse) and had a left breast cancer. There are many different types of breast cancer and not all of them necessarily need to be treated with everything recommended under the standard of care. For some, such as small, and grade 1 resected with wide, clear margins, the overall local recurrence rate is relatively low even with nothing more done than just the surgery.  

I had just turned 49 at diagnosis (and 8 months into menopause at the time) and refused everything but surgical intervention. It's been 7 and a half years cancer free for me thus far. I have very non-dense breast tissue so I can depend on a yearly mammograms to catch anything that might get started. I personally would never allow radiation prophylactically (just in case) but wouldn't hesitate, despite concerns about future radiation induced disease,  if I had a tumor that couldn't be controlled any other way.  

You obviously are somewhat more concerned about radiation than most seem to be. Smart lady. Educate yourself very well as to what your PERSONAL recurrence risk is and then make the decision that you're most comfortable with.  Best wishes to you.

Ki-67 5%. Wide margin lumpectomy and biopsy track removal. Refused radiation and hormonal therapy. Dx 2/22/2004, IDC, <1cm, Stage IA, Grade 1, 0/1 nodes, ER+/PR+, HER2-