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Radiation to Clavicle Nodes?

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dmwolf View Drop Down
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    Posted: Jan 05 2010 at 12:29am
I'm glad you decided against clavicle radiation.  If you don't absolutely need it (confirmed tumor in clavicular area node), avoiding it seems like an excellent idea.  A friend of mine had her clavicle irradiated and she has had neck pain ever since.  Those tissues stay tight forever, and tightness there leads to neck and back problems.  The breast area is no big deal in comparison.
-Denise
DX 2/08@43 stg II IDC; gr2,0 nodes. Neoadj chemo, first ACx2 (fail) then CarboTaxotereX6(better). Lump, Rads done 11/08; Clodronate. False alarm queen: PetCT lung & TM marker. NED. PBM w/recon 9/10.
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unklez View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote unklez Quote  Post ReplyReply Direct Link To This Post Posted: Jan 04 2010 at 11:45pm
Dear all,

Just a quick update - we decided to go with Sloan on this. Wife will be getting 16 fractions of radiation to the whole breast lying in prone (face down or as she call it the doggy style) position followed by 5 boosts to the tumor bed lying in supine (face up or missionary!).

We really liked the way the Sloan radiation oncologist reasoned it out with us on why clavicle radiation is not indicated for her. Regarding Canadian and Conventional fractions she totally left the choice to us but did tell us that Sloan is very much for Canadian fraction while MD Anderson and some other teaching hospitals are not so. What clinched the deal for us was that she said she would recommend this treatment plan for her own family members if needed.

Wife should be starting radiation near the end of January.

Wife Dx: Jul/09. Age: 37. Size: 3cm. BRCA: -ve. Lumpectomy: Aug/09. Micromet 1/9 node. Chemo Start: Sep/09. E5103. DD ACB-> DD Abraxane (Taxol reaction). Zometa (S0307). Canadian Fraction Rads.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Donna Z Quote  Post ReplyReply Direct Link To This Post Posted: Nov 12 2009 at 7:51am
unclez 

Gathering good data, feeling confident with your team then making a decision that makes the best sense for your individual situation is what we can do. I know I most appreciate having choices and discussion around the pros and cons of them. So does radiation start in Feb/10?? Or do you start while on chemo? Yes I would be interested on what you onc says about the question re premenopausal. There is alot they do not know about this tnbc. But at least we do have something to hit it with; that I appreciate.

Donna Z
Dx 03/09 TN, Stg 2a, gr 3, 1.7 cm Taxol X 12, FAC X 4, segmental mastec Sept 10/09,
1 pos/29, from Canada, Treatment MDAnderson, rads X 30 started Oct 29/09. Zometa start Nov 24/09
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Post Options Post Options   Thanks (0) Thanks(0)   Quote unklez Quote  Post ReplyReply Direct Link To This Post Posted: Nov 12 2009 at 1:39am
Thanks Donna Z. I think they say risk is higher for pre-menopausal mainly because there is (theoretically) longer remaining life for younger women. We shall ask the radiation oncologist at our next visit. As of now we are leaning towards NOT getting radiation to SCV and opting for Canadian Fraction.

Wife Dx: Jul/09. Age: 37. Size: 3cm. BRCA: -ve. Lumpectomy: Aug/09. Micromet 1/9 node. Chemo Start: Sep/09. E5103. DD ACB-> DD Abraxane (Taxol reaction). Zometa (S0307). Canadian Fraction Rads.
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Donna Z View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Donna Z Quote  Post ReplyReply Direct Link To This Post Posted: Nov 10 2009 at 7:08pm
unclez

MDA advised not to radiate supraclavicular. I had a complete level 1 & 2 axillary dissection and they felt with one positive node and none showing any chemo clearance that my risks were low. However he did say the risk was not zero it was 1 to 4%. They also said that risk is higher for recurrence period if premenopausal. They do not know what it is but they believe there is something hormonal that is driving tn because your risk for recurrence is higher when pre menopausal; just don't know why. So I am not radiating supraclavicular. I had a surgical menopause with ovaries out several years ago due to another gyne problem; not cancer. But I am in my early 50's so may have been there by now anyways. Also my tumour was on the very left side of the breast. It was so close to that positive lymph node that they did the lumpectomy through the axillary dissection incision. This may weigh in on the decision as well. Hope this helps in your decision. I was very ambivalent about the supraclavicular on what to do. But decided to go with their recommendations here. I know I am at risk for lymphedema and thought radiating supra would make that worse as well. However I do not have any data that says that as already getting the axilla radiated and the dissection puts me well into those risk factors. Can they give you a percentage of risk to help you decide?

Donna
Dx 03/09 TN, Stg 2a, gr 3, 1.7 cm Taxol X 12, FAC X 4, segmental mastec Sept 10/09,
1 pos/29, from Canada, Treatment MDAnderson, rads X 30 started Oct 29/09. Zometa start Nov 24/09
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Post Options Post Options   Thanks (0) Thanks(0)   Quote krisa Quote  Post ReplyReply Direct Link To This Post Posted: Nov 10 2009 at 6:27pm
unke,
you might contact two members on this site, who had the Canadian (shorter) version of radiation:  SuzanneK, and Renee...
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Post Options Post Options   Thanks (0) Thanks(0)   Quote unklezwifeonty Quote  Post ReplyReply Direct Link To This Post Posted: Nov 10 2009 at 6:21pm
Donna,
I'm reading your post again. Question: Did MDA advise you not to get SCV nodes radiated? Did you get them to radiate the area anyway?




Edited by unklezwifeonty - Nov 10 2009 at 6:23pm
Dx: Jul/09. Age: 37. Grade: High. Size: 3cm. BRCA: -ve. Lumpectomy: Aug/09. Micromet 1/9 node. Chemo Start: Sep/09. Kicked from E5103 due to Taxol reaction. Now on AC->Abraxane. Zometa (S0307).
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Post Options Post Options   Thanks (0) Thanks(0)   Quote unklez Quote  Post ReplyReply Direct Link To This Post Posted: Nov 10 2009 at 2:50pm
Thank you Mainy, Denise, Donna for offering patient insights. You can only get this info here. Kudos to TNBC Foundation and its members.

Yeah, we will make an appointment with the Sloan radiation oncologist to complete the circle.

The initial drivers to do the Canadian fraction were to save cost, treat more women using the available radiation facilities, offer a convenient alternative to women who today simply choose Mastectomy to avoid long radiation treatment. Whatever the initial motivations, now it is available and we want to make an informed decision that we are comfortable with.

Donna, you made a decision that you felt comfortable with even though you had to come to USA to get that treatment at your own expense.

Whelan does not add the boost but docs at Sloan do because they believe it adds value even after Canadian Fraction. Now there is 12 years of data from the Whelan study after the treatment and it shows equivalent results in the 2 study arms (Standard vs. Canadian Fraction). Not sure but I believe Canadians still use the standard radiation if >4 nodes?

Both the docs we met recommended against radiating the axilla region. According to them, that would significantly increase the risk of lymphedema and there is no expected benefit for DW.


Wife Dx: Jul/09. Age: 37. Size: 3cm. BRCA: -ve. Lumpectomy: Aug/09. Micromet 1/9 node. Chemo Start: Sep/09. E5103. DD ACB-> DD Abraxane (Taxol reaction). Zometa (S0307). Canadian Fraction Rads.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Donna Z Quote  Post ReplyReply Direct Link To This Post Posted: Nov 10 2009 at 1:57pm
Hello unklez

I have looked at some of the research done on the shortened Canadian version of radiation. One study that I was given in Canada that really spurred their decision to go to this protocol was the Whelan study. It was done on 1234 women half of whom got the shorter version. They also got no boosts. Only 11% of the women in the study even had chemo and they were all node negative. So I felt quite strongly that I was not in this risk category and triple negative on top of it. Much of what this study says is open to critique. For instance they say that boosts were not given to the lumpectomy site because the efficacy of boosts was not available. They also postulate that boosts would be of relatively small benefit. Much of the literature I have read indicates that boosts are recommended. However the research is not there yet on this hypofrac. schedule and boosts. I was told if I insisted on boosts that I would have to be responsible for significant side effects. This was likely told to me because they said I could have the 42.5 gray over 16 days, no boosts and that was it. I think for lower risk women maybe with node neg. and hormone + this may be a good choice. From looking at the demographics of the women in the study one could surmise this. However I was also told this study had other biases. The final concluding sentence in Whelan's study is: "The shorter schedule will permit more efficient use of resources, in that up to 50% more women can be treated with existing equipment and personnel." I think overall if more women will be treated because of cost and time (women's time as well) that this is overall a good thing. However I also strongly feel an individualized plan with us higher risk tnbc node positive should be explored thoroughly. All that I am saying is strictly my personal thoughts and experiences and each person has to weigh all of the pros and cons and do what is right for that individual. As far a supraclavicular with one positive node here at MDAnderson they said to weigh those side effects. I had 29 nodes removed with one positive and the rest showed no evidence of previous fibrosis from having been cleared with chemo so they said no they do not recommend supraclavicular radiation. They said they are about 85% accurate is saying that all my nodes were negative to start with(except that one of course). They are not 100% accurate yet post chemo. I was really on the fence about this one. And I can only say to get second opinions and go with what you feel most comfortable with. The biggest thing for me was I knew I could only have radiation once to this breast and I did not want to live with doubt and wondering. Who knows maybe in ten years there will be enough research and long term results that tell us which protocol is best for which women and their risk factors. I hope this helps. There are also some other studies on the hypofractionated protocol but what I searched for was critiques on those studies and mostly it said there is potential but not enough studies or long term results on a wide enough variety of women. I am somewhat biased because for me I made the decision to go with the standard radiation and had to come to the US for that choice. I did not have a choice in Canada.

Donna 
Dx 03/09 TN, Stg 2a, gr 3, 1.7 cm Taxol X 12, FAC X 4, segmental mastec Sept 10/09,
1 pos/29, from Canada, Treatment MDAnderson, rads X 30 started Oct 29/09. Zometa start Nov 24/09
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Post Options Post Options   Thanks (0) Thanks(0)   Quote mainsailset Quote  Post ReplyReply Direct Link To This Post Posted: Nov 10 2009 at 1:31pm
Unklez, yeah I thought you saw he Sloan folks first, I'd still complete the circle and go back to them with the thoughts of the 2nd opinion. In a way you're giving them a chance to defend their position which is only fair, otherwise, they may look lesser informed (which of course they're not)
 
The red pears were the only thing I could end up eating, keep the skins on and and they are available all through the winter months. Hopefully they would be something that would work well. Just a thought
dx 7/08 TN 14x6.5x5.5 cm tumor

3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear
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Post Options Post Options   Thanks (0) Thanks(0)   Quote dmwolf Quote  Post ReplyReply Direct Link To This Post Posted: Nov 10 2009 at 12:43pm
Unklez, if it were me, I wouldn't do the supraclavicular radiation without either a whole lot of nodal involvement (many nodes, large tumors) or evidence that the supraclavicular region is/was involved.  The thing about radiation in that area is that it affects your neck and shoulder, making the muscles tense and hard (forever).  A friend who had radiation there has had neck trouble ever since.  Since a single microtumor doesn't even really count toward recurrence probability, I wouldn't subject my body to the extra radiation.  However, I would probably irradiate the local area under the arm where the microtumor was, just in case.  This increases the risk of lymphadema, but I would probably do it anyways to be safe(r).

-Denise
DX 2/08@43 stg II IDC; gr2,0 nodes. Neoadj chemo, first ACx2 (fail) then CarboTaxotereX6(better). Lump, Rads done 11/08; Clodronate. False alarm queen: PetCT lung & TM marker. NED. PBM w/recon 9/10.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote unklez Quote  Post ReplyReply Direct Link To This Post Posted: Nov 10 2009 at 11:50am
Dear Mainy,

We met the Sloan doc before the update came out :-) I am guessing that the Sloan docs knew about of the impending change from consider to strongly consider.

Cost and convenience - patients as well as doctors - is the reason behind Canadian Fraction. The Sloan doc left that decision to us saying the outcomes and risks are identical.

Remind me what the red pears do please....



Wife Dx: Jul/09. Age: 37. Size: 3cm. BRCA: -ve. Lumpectomy: Aug/09. Micromet 1/9 node. Chemo Start: Sep/09. E5103. DD ACB-> DD Abraxane (Taxol reaction). Zometa (S0307). Canadian Fraction Rads.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote mainsailset Quote  Post ReplyReply Direct Link To This Post Posted: Nov 10 2009 at 11:23am
What did the Sloan doc say when you told him about the updated NCCN clinical practice guidelines? And perhaps some of the Canadian women members will come on board to tell you what they think of the Canadian Fraction (and I'm betting they won't be supportive as one of the reasons for considering it is cost, not that it gives a better outcome)
Glad that she's hanging in there. Don't forget the red pears! Best, M
dx 7/08 TN 14x6.5x5.5 cm tumor

3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear
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Post Options Post Options   Thanks (0) Thanks(0)   Quote unklez Quote  Post ReplyReply Direct Link To This Post Posted: Nov 10 2009 at 10:42am
We have opinions from 2 radiation oncologists.

One is at Sloan, rated well by patients, and says DW does not need radiation to clavicular nodes. Apparently not a single doctor at their board meeting recommended this for DW. This means radiation will be given face down, which means less exposure to lung and heart and we have the choice of getting either shorter, 19 day Canadian Fraction treatment (+5 day boost) OR 28 day Standard treatment (+5 day boost).

Second is at a community hospital, is in Castle Connolly for 11 years, says DH needs radiation to clavicular nodes. He cites the recently updated NCCN clinical practice guidelines which say "strongly consider" with 1-3  involved axillary nodes. (2009 guidelines said "consider", so it is a change in the last 1 year). This means radiation will be given face up which means even more exposure to lung and heart and we do not have the choice of Canadian Fraction.

Just wondering what folks would choose in this situation?

I am of the opinion that any possible micromets in the clavicular region should have been cleaned up by chemo. DW is undecided at the moment.

In other news, she received AC #4 yesterday. Other than port issues, nothing significant to report. Hopefully she won't experience significant side effects with this cycle.



Wife Dx: Jul/09. Age: 37. Size: 3cm. BRCA: -ve. Lumpectomy: Aug/09. Micromet 1/9 node. Chemo Start: Sep/09. E5103. DD ACB-> DD Abraxane (Taxol reaction). Zometa (S0307). Canadian Fraction Rads.
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