Supraclavicular radiation -- anyone have that?

GMN- Canada- I had 22 axilla nodes removed as well as full mastectomy 1.9cm lump. Only the sentinel node was positive so we opted for chemo 6 months and NO rads. Well granted it is now 7 years later but I started w/hand and arm pain ( same side as BC) 3 months ago. On CT node near the collar bone was 1.6cm and biopsy positive plus a questionable 1cm new lung spot.

I just completed 6 weeks of RADS to that collar bone ( subclavicular ) area and re CT good for -gone!!) So if I had earlier RADs would it have stopped it? Will not second guess myself or my previous Onc. I am a non smoker and the lung spot is on opposite side to my previous BC so go figure. Not even know for sure if it is BC but Onc says he would treat the same w/hormone blockers.

Yes- RADS is very tiring 6 weeks of back and forth and for me thanks God no work schedule to get around. I had to get 45 minute each way volunteer rides in near a city a moved to only a year ago.. I HAVE been able to swallow for the whole 6 weeks and now 1 week after completion. RO said maybe swallowing issues after first week so go figure. I am having some burning and starting to peel a little only now. 7th week so feel lucky in a way that no more adverse effects. For me it beats chemo any day.

Dorian- you have an unusual situation w/the change of status. You went a long time between, may I ask what your return symptoms were. My HER was neutral +2 , which they call negative but I had thought this was positive finding so have had no Herceptin. Sometimes I think its all a guessing game for these MO. They keep trying new things in hopes of stalling it and maybe some new drug coming on the market down the road.

Hugs to both of you and hang in there. Lets support each other thru this damn thing. One think I will do for sure is to take time for family and do some fun things I have not been able to do these past several months. I have changed my diet a lot I might add which I think is a good thing. ( Not a Dr request)

Dorian - a very puzzling situation I am sure. Triple neg is a tough cookie. Lymphedema is a difficult thing to handle. When I first told my PC about my hand tingling pain and weakness, it was a little swollen and I suspected late onset lymphedema since my surgery 7 years ago. I had no idea that it was BC returned which was found in August. I already had ( have ) neuropathy in both feet since 2006 so have learned to live w/it. My pos lymph node is too close to major blood vessels to operate on. Past couple of days burning-peeling has been pretty bad but I am sure in another week things will be clearing . Funnily enough the NP told me to use only " Aquaphor" which is like thick Vaseline. I am trying a cream that also has some Hydrocortisone mix in it too- this seems to be effectice against the burning pain but all are tad messy. Soft cotton tee-s only thing I can wear and even that is painful. I see MO on Friday to discuss other options beside Tamoxifen. ( How have you tolerated it?) I had very bad nausea -stomach pains and bad emotional out bursts on it as well as neuropathy worse. I will pray that the RADS will zap those little buggers for you. Hand in and let me know how things are going .Hugs

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gmn - like you I had chemo prior to surgery & also had superclavical radiation. The reason that they recommend it even where they would not usually given that you only have one node showing cancer is because you had chemo pre-surgery. The chemo shrinks the tumor & hopefully kills of any cancer cells you might have in your toe or in armpit or in the node that you have superclavically, Since you had chemo pre-surgery they can not know how many would have had cancer during surgery. They generally won't do chemo first unless they are mighty sure that you have a lot of positive nodes -the reason being because they then have to do an ALND rather than an SNB. So IF the chemo had worked really, really super well, you wouldn't have any cancer in the node they took out. Since you did, they want to give an extra zap to the area under your arm, as well as the next place the cancer would have 'traveled to'. I have mild LE - don't know if it's from the ANLD, the rads or a combo thereof. Other than that, I had a bad 'sunburn' that lasted a week or so & the rads were tiring. I would do the same thing again, but I had a 9cm tumor & was and am bound and determined to do whatever I can to make sure this shit does not kill me. They are quite careful about not hitting your esophagus & the rads are much lighter weight than what they used to give people.

Do you know if I can have dental extractions after supraclavicular radiation ? 

Do you have any restrictions  regarding dental treatments after supraclavicular radiation (root canal , dental implants, etc.) ? 

I will begin chemo and radiation after chemo. I have periodontal disease and probably I will need to extract some teeth in near future. I had ALND (1 node positive, 9 with micromet and vascular invasion).  Maybe I will need supraclavicular radiation. I am researching  before my medical appointement.

I found some information about dental extractions about head and neck cancer telling that you should avoid dental extractions after radiation in the neck area, but I do not know if supraclavicular radiation for breast cancer needs the same oral care. 

robsp - two days before I was diagnosed with BC, I was told that I would need periodontal surgery. I did chemo, then breast surgery, then rads (w/supraclavical), and started the periodontal surgeries about 7 months after the rads ended. I have had no problems. y oncologist (who I know very well & is very good) told me that it would be a good idea to wait a bit after all the major treatments were done. My periodontist's mom had BC & he didn't think there was anything wrong at all with having surgery after rads.  

My mother's situation is a little different as she only had radiation to the supraclavicular nodes because her cancer had already spread there several years after her initial dx. She had no symptoms from the radiation whatsoever. She was given a prescription for a special drink to help with any esophageal symptoms if they came up but ended up not needing any.

Dorian- Yeo my n

 node shrunk very small amount. so RO does not expect any .more shrinking. No more rads. insigbt after 6 weeks last Sept.Feeling good so carrying on as normal. Its all.much of the unknown anyway

 Stop and smel l the rain or  roses for a whilkm i

Debic- hope you get some more responses as I am afraid my experience was  not very positive. It has not  stopped my progression , and has ( as expected ) caused some new damage to that right side upper lobe lung. The actual RADS was tolerable and I cannot even see any shading of the area involved.

Everyone is different depending on what your status and stage are. In my case there are two new spots on the opposite lung. I am awaiting new scans of bone snd abdomen. Hugs to you.

I just started radiation and am getting the supraclavicular radiation.  The doctor recommended it and I want to do what I can to stop the cancer.  So far so good but I've only had 4 treatments.

yes i did, I was told very strongly not to use any creams at all during rads, not even aloe gel, and noperfumed shower   gels just simple soap. I found this hard to believe and used some aloe on one patch once as a test, they were right I burned there but nowhere else! So I followed their recommendations to the ketter.  After rads finished i used lots of moisturiser including a homeopathic cream called SEVEN cream ( google it) and now 18 months on there is no sign of damage in that area but i am still very tight and tanned around scar area . 

Hi gmncanada, I competed radiation to breast and surrounding lymph nodes including clavicular a month ago. So far no issues. I had 28 treatments, each consisting of whole breast radiation and radiation to surrounding lymph nodes. By the end the clavicular area got pretty red - like everything else - but there was no peeling or open wounds. Everything came back to normal within 2-3 weeks after the last session. 

One of main problems was what to wear to work so that the neck is covered. I wore buttoned down shirts and colorful scarves to cover the area and hide stains from Aquaphor that are unavoidable.

Stage 3, 26/29 aux nodes positive and found clavicle nodes positive too. AC wiped out cancer under clavicle so hopefully radiation will make sure. I would rather face rad complications than have recurrences.  Positive, positive thoughts.  

Debic, I had radiation to my supraclavicular nodes 16 years ago without any problems and so glad I did.  When I was initially diagnosed with BC I was given one very good piece of advice: to take as much of the drugs/treatment that is possible.  I did end up asking my onc for more of the 'red' drug (Adriamycin), and he agreed after revamping his calculations!  Tamoxifin was no good for me and I was ER Neg so nothing else was (is) available for me.  Be strong and follow good advice!

My radiologist at Mayo, best in the world, recommends similar radiation. The difference being they use a proton beam which is better controlled as to pinpointing the area and then stopping the beam before it penetrates beyond the target area (i.e. into the thyroid, esophagus). My cancer involved most or all of the axillary lymph nodes even though it is Luminal A. I was arrogant thinking that being a survivor of endometrial cancer was enough in one lifetime, that no new cancer would pop up. So the 3.1 cm, grade 1, ER+ PR+, HER2- tumor got a huge head start. Thus I resume the dance with different music and more serious consequence. I will comply with the standard of care simply because people a lot smarter than me (which would include every woman who had regular mammograms :-) ) developed it. I'm done trusting my wishfulness .... best regards whatever you choose.