Fall 2013 Rads

PRB...I asked the lead blanket question. I was told that the equipment is designed to deliver to a very specific field and that a lead blanket would cause any strays to "scatter" all over the room. I knew going into lumectomy surgery I would "have" to have rads so I've been accepting of most of the answers. Continue to ask questions til your satisfied.

HI folks

PRB- I did 16 total but I don't know the fractionated or the total grays-no boosts. I will ask on the dose- I was not offered a longer protocol at all and was told this was a shorter "Canadian" protocol. I would say your lymphedema is more related to the large number of nodes you had removed versus the lumpectomy. When you say you read an article that says radiation does not improve survival but does reduce recurrence, all I can say is the longer you stay with no evidence of disease the longer you are alive with no evidence of disease. There are no magic answers prb- you don't have to do anything you don't want to do and doing nothing is a decision in and of itself.

For what its worth I think you will feel more relieved when you decide since you are clearly agonizing over this. I also think if I was taking care of you ( not a doc but am a nurse) and you were this ambivalent about rads I am not sure I would support proceeding because of where your current mindset is. A positive outlook is critical to completing any kind of treatment.

I am 2 weeks out from radiation and am 52 years old and finished first week on tamoxifen- other than my itchy rash which incidentally showed up last 2 days of rads I am not having any residual issues. The radiated breast is smaller and I have some retraction at the lower scar line- but it was noticeably smaller immediately post-op.

For those worrying about flying- I just flew from San Francisco to the East Coast and wore a compression tank top more as a preventative measure than because I have any symptoms of lymphedema (I had 3 nodes removed). I always get swelling of upper and lower extremities when I fly and this time was no different. I drank fluids got up several times and made sure not to carry my luggage with my operative side arm- thats the hardest thing to remember for me. I am not saying don't worry but don't stop doing what you want to do- proceed with caution.

Thanks wyo! Considering flying and have been worried.

Good luck to everyone this week and happy dances to those finishing!

Have anyone heard of or tried Graviola?

lisasp if you are going to fly you should wear a sleeve. I only had 2nodes removed. My Lymphodema physical therapist suggested this as a preventative even though we are at low risk. It may not ever be a problem but it can be even years down the road. Check with your insurance and see if you can see a LPT for evaluation and consultation. I learned a lot from just 2 visits and was properly trained on lymph massage if I ever see signs of swelling.

So glad to see so many finishing their treatments.

Happy healing and best wishes for your futures.

I have not had much fatigue throughout this, but after I finished my boosts last Thursday, I got hit with it big time. Has anybody else experienced this? I hope that will be short lived.

I am just starting to research the flying correlation- I have flown short flights a few times but during this last flight from SFO to Miami I wore a compression tank top- it was extremely helpful for the torso but I have read up on this and sleeves are a must for diagnosed Lymphedema and highly recommended for high risk which we are- radiation increases the risk factors inherent in having lymph nodes removed and the system disrupted during surgery. 'check stepup-speakout.org

I did not have huge fatigue issues during or after so can't speak to that.

I am flying this weekend and when I saw my MO last week he recommended that I wrap my arm with an ace bandage from the wrist to the armpit. Not sure how I feel about this since I don't really know what I'm doing and how tight to wrap it. What do you all think?

oh no! I will be flying halfways across the country on New Years and the thought of lymphadema or wearing a sleeve never crossed my mind. Now I am freaking out about it! I had snb nodes on both sides removed and finished rads 2 weeks ago. I never thought I would have to worry about flying.

Regarding lymphedema, my BS told me I didn't have to worry about getting blood pressure taken on my arms, even though I have read on these sites and others that you shouldn't allow anyone to do so. (But in my case, I guess they'd have to take it on my leg?) Anyway, I threw caution to the wind and I have had my blood pressure taken on my arms several times since surgery, luckily, so far so good. But what to do about when getting blood drawn? The other week, after my MO appt, they needed to draw some blood, but it was the end of the day and the girls who usually draw the blood had gone, so a chemo nurse came in. She had trouble finding a vein (they all have trouble, since I guess I have small veins). So, first she tied this rubber band-type thing around one arm and tried various things to get the vein to stand out, that didn't work so she tied it around the other arm for what seemed like an eternity till she finally got the vein. I am still worried about it!

Seeking advice from you gals that have been through rads. I'm just getting started - 2nd today. I'm having rads on my right side and I had mastectomy with no reconstruction. I mostly sleep on my right side. I'm assuming when I start having having skin problems I may have problems sleeping on my right side. Did you guys have sleep problems? What did you do?

L2- don't panic- you had bi-lateral surgery so want to ensure you take good care of yourself and you will I am sure.  I flew from San Francisco to Miami a week ago pretty long flight and I made sure I drank lots of fluids and got up and moved around quite a bit. I made sure I had an aisle seat so I could get up easier and was not "cramped" into a row. I got a great compression tank top that I wore more as a preventative thing and it was terrific for my torso.  I have not figured out the arm and hand thing and will check with my surgeon because I fly a lot both short and long hauls.The thing about flying is the pressurization of the cabin so just make sure you are mobile and hydrated.  I fly back to San Fran saturday so will let you know how that flight went.

As far as the blood draws- I would request they use a warm compress or have you keep your extremity dependent and flex your hand to get the blood vessels more engorged/visible.  If they have to use an occlusive thing tell them to use the type of tourniquet that is not a skinny rubber thing but a wider thing that has a larger surface area.  I can't imagine you are the first person they have had with issues bilaterally so they should have a protocol for dealing with it. 

LisaSp, congrats on being done, I envy your hair growth. When did you notice hair? I'm 8 weeks out from chemo and nothing. In fact I'm sure in the last month I have lost more eyelashs and my eyebrows are almost nonexistent. I was happy that I had not lost them before and thought I was going to make it without losing too much of them, seems odd losing them now. 

I'm on day 21 today. Getting pretty pink, just tender. Not too sore as long as I don't run into anything....

Congrats to all who have finished recently. May your holidays be merry!

speaking of tourniquets - a blood pressure cuff makes a great tourniquet.   My dad was a doctor... when a nurse would come to him saying she couldn't find a vein, he would go, use a cuff, and always found one.

wyo and Mrs. P.,

Thank you for the advice and the much-needed reassurance. 

I am feeling less worried and better already. 

Thanks batcatlady, especially for the link to the lymphedema and flying study. I flew after surgery as well without a sleeve before I realized I might need one. No problems, one hour flight. Of course, that was pre-chemo, pre-rads.

My feeling is as my flight is only 90 min. in Feb. I should be fine without the sleeve, hydrating, moving and stretching regularly, and avoiding lifting with the left arm. I am due to see my BS, RO and MO before my trip so I will ask their opinion as well.