Supraclavicular radiation -- anyone have that?

I had two out of 27 lymph nodes positive for macrometastases. I chose to go with regional node irradiation (included supraclavicular radiation) after being referred to the results of this study linked here -



http://oncolink.org/conferences/article.cfm?c=3&s=67&ss=348&id=2148



It is a hard decision to make, I did get a second opinion to help me out. I completed radiation mid-March 2013 and, to my knowledge, it has not had a negative impact on thyroid or esophagus.



Take care

I finished supraclav radiation in Jan of this year. I too was very worried. I got through it fine with no issues. That area 'burned' a little more than my breast. My thyroid already started with problems well over a year ago (I actually suspect several years ago). I understood and accepted the need for radiating the supraclav. If not, I'd Have gone for the second opinion.

I got supraclavical rads and had no issues with that area. The area under the arms for nodes was much harder.

I have been hypothyroid for fifteen years, i had rads to supraclavicular and now need LESS thyroxine for first time ever! I burned a lot more there but had no other effects although i do think my taste buds have changed......but that ould be hormones. The effect on axilla area was worse and i swell there and it is very tight....

Hi all, I am interested in how you were presented with the choice to do the supraclavicular rads or not? I just found out that I am being irradiated from below the breast to half of the way up the neck, after I have done four treatments.
I had a very aggressive 9cm tumor and will do anything to live, so I would have said yes, but it is just odd that no one had informed me.



Just wondering when you were asked about it?



Thanks!

Selenawolf, thank you! I am so nervous about this. Starting fri. and although my RO tried to assure me that SE are rare, I can't help worrying about thyroid, esophagus, heart, lung, lymphedema and ribs! I had clear nodes, but apparently because my tumour was "so large " (?) 3.3 cm my RO wants to be agressive. I was also blessed with PCR, so I guess I shouldn't back down now, I know triple negative is aggressive -I just have to accept being more aggressive!

This may be what I must face in the very near future. I had a radical mastectomy and 6 lymph nodes removed 6 years ago. (Stage 2b)i had 8 rounds of triple therapy chemo over 6 months but  no radiation as only one node positive.

Today I found out my MRI is positive for a nodule in the axillary area and also the supraclavicular area. ( I have been having hand arm pain,numbness ,swelling and weaknes for month) I am to see an oncologist. So now I wished I had gone w/radiation back then. I did not do well w/chemo and only took hormone blockers for 18 months d/t side effects. I though at 5 years I could celebrate. Now I am drawn back in to that quamire of confusion and fear. These SE you mentioned worry me but not as much as more chemo does.

I should qualify my statement.  I have experienced very few and minor problems.

During radiation treatment, I got very fatigued and, of course, my skin burnt, but it was not unsimilar to a sunburn: itchy, prickly and red.  I didn't have any trouble with peeling or weeping; I used the Glaxo base cream my RO recommended religiously.  What I have noticed is that, although my skin healed well, it's still a little more reactive than the skin that hasn't been irradiated; it burns in the sun quicker, it reacts to certain skin products that I never had problems with before, it takes a bit longer to heal if I get - for example - an insect bite. 

Today, I am as active as I was before treatment: I walk; I cycle 20-30 miles per week; I play baseball; and garden.  I have noticed no issues as yet with my heart, lungs or lymphadema.

"... good girls never made history ..."

I was not consulted on supraclavicular radiation at my treatment center. I am getting it and found out when I complained of sudden, significant difficulty and pain with swallowing. I have 17 of 33 treatments to go. I have fatigue (do-able so far), some skin irritation (very minor) and this just came up. I think this will be the biggest issue unless the fatigue gets much worse. I don't like eating just soft foods. I want my steak!

I had 3 positive nodes on my SNB, had ALND with all negative nodes but have triple negative disease so they are being very aggressive with  my treatment. They recommend a numbing medication to swallow before each meal and treating symptomatically. They will, if I insist, give me a treatment holiday. I do not want to drag this out any longer! I have already been in treatment since Jan. 3. Enough is enough! I want to be finished with this!!!! Unless I can't eat I will continue and finish on time.

So sad that we even have to struggle over these decisions but we ladies should come to a plan that is the right one for us. Everyone is a little different.  I could care less what research they may want to do at this point. I am to start radiation a the end of the week. Not sure how extensive. I know part will be a similar area to yours. All I can tell you is that I had Stage 2b w/one pos sentinal lymph node. I had 6 months of chemo ( it has pretty halted my nursing career after a year) I did not get radiation Tx,  though it was suggested then they agreed not necessry since just one node. Now its back . In retrospect I wish I had gone w/rads first instead of chemo as I may have been able to continue working longer. I would gladly never eat a steak again ( we eat too much meat anyway) as long as I could eat and taste something. Stopping my arm and shoulder pain is top of the list right now so we will see. Hang in there my thoughts are with you and I sure will be asking plenty of questions when I see the Rad Onc.

I just had #14 of 33 treatments that includes the supra clavicular area. I had a positive node with a 4mm macromet. It's probably too soon to know yet what long term side effects will come from it but wouldn't feel comfortable not doing all that I could. I think about that positive node all the time and pray to God that between the chemo and radiation that I and my family will never have to go through this again. I outweighed which risks I was more willing to take. I want to get rid of all of the cancer.

Hi grammy, Gosh I am so sorry you are going through this.



Please dont be too worried about a younger doctor- they are more up-to-date on the new studies and statisitcs, and clincial trials, than a lot of the older doctors. I work at a medical school and the new fresh energetic doctors are really good almost all of the time these days. The schools are so competitive that they have to work super hard and be really good to get through.



I am sure wishing you the very best.



hugs

Linda2012 please keep us updated on how you are doing.My daughter in law gave me her"Bullet" blender yesterday which she had never used. I had sloughing of tissue on the roof of my mouth 6 years ago when I first had chemo, I know this may be similar or worse so I want to be prepared. Stock up the fridge w/something easy to get down. I have a rough time even taking large pills so it may be babyfood time..ha..

Dorian - I see you noted your hormone status as changed between original Dx and this new one. Kinda makes me wonder if they should have treated you with Herceptin earlier. Mine is same ER Pos. Repeat Rads may depend a little on your age as far as long term effects. I am 65 now and did not get rads first time around. My repeat chest CT already shows damage to the upper tip of right lung where RADS done. I am also a non smoker no cough. I would for sure mention that to your Onc and maybe a MRI to be sure no mets.Good news is that my node hasben zapped and no others seen.