Summer 2013 Rads

GoWithTheFlow: I think it's normal. I had a lumpectomy not a MX, but rads seemed to work up the whole surgery area and I couldn't lay on my left side. Even in the beginning prior to the skin issues.

Sciencegal- Honestly I think I am the exception not the norm for skin issues. almost everyone else seems to get through fine with just some redness/pinkness and a little burning. I worried initially because my complexion is very fair and I have never been able to tan. I have always just burned and peeled, and then started the whole process over again. However, my RO said that has nothing to do with radiation and will not necessarily predict how your skin will react. He said either you will or you won't have issues and there is no way to really predict it in the beginning.

Goldycat123- Welcome! There are some great women on this board. I have really found it super helpful (even on days I just need to vent). I hope you do too!

IamNancy- Yeah!!! Your almost done!!!!

Well....not a super day for me. The first day or two after a certain area of skin breaks down is the worst, and I have two more breakdown spots today. After about 3-4 days I either get used to the pain from that spot or it stops hurting as much. When I saw my nurse practitioner yesterday she was really worried about skin breakdown in the tumor area since it looks kind of bad already, and had me start putting the mepilex dressing on it as a precaution to stop any rubbing. It already really hurts so she is probably right. If this happens I think they better break out the morphine!! I will start my boosts this afternoon. So they will leave most of my other problem areas alone so they can hopefully start healing, but might make the tumor area worse. Sigh............

I start Tamoxifen next Friday. Initially I was more worried about it than the rads because I had heard so many bad stories of SEs from tamoxifen. But now.......eh,not so much. Maybe like everything else, I am just tired of worrying at this point.

Off to treatment.......Sending everyone gentle hugs and good vibes for a healing weekend!

Hello ladies, I have not been on in a while but wanted to check in and see how you all are doing and give some updates.

I have 4 treatments left and did really great with skin things until end of week 5 when my skin finally gave in and now my breast looks like someone took a blow torch to it. Unlike some of you, I did my 8 Acuboost first and that is the area that now looks the worst. Dark red and itchy. The nipple is pretty disfigured at this point (that is where my lumpectomy incision was) and it is also contantly pert as this point- nice huh?) wearing tank tops and going braless at home and that helps a lot!!

I am continuing with the coconut oil and it is rather remarkable as I can see if healing if I keep slathered in it between treatments. I have used NOTHING else and all the nurses say my skin has done remarkable well.

I start Tamo early July and went to a great support group at my clinic that helped me to be less nervous about the SE's.

I recently went to a luncheon and was feeling kind of sick and tired of this whole process- I sat next to a woman my age who happened to be in a wheelchair. She was lovely. Later I learned that she had been attacked in her home by an aquiantance, almost raped and shot in the back while trying to escape. She is a vital and happy person who likes to enter wheelchaor marathons. I'm sharing this because it is easy to get mired in the treatment but there are so many people out there suffering EVEN more than us and ATTITUDE is everything. This really helped me to take a deep breath and keep going.

So keep the faith & cheer going and know that you are loved and supported!!

Just talked to surgeon who's spoken with two RO who both agreed I wouldn't need rad if BMX. Hurray! Pretty crazy to be happy about getting my boobs off but I sure am!!

Welcome newcomers. You will find a lot of support on this board as well as a place to vent!

I also have a lot of tightness. I guess it is normal but uncomfortable. I may need physical therapy again when this is all over.

I have had 27 bolus treatments, (intentionally directing the radiation at my skin) out of 30 and my doctor knew from the beginning that I would have skin breakdown. She is actually happy it took until this week to develop in a major way. Most of you newcomers will not have bolus or at least not every day so please do not be afraid, ok? I have found emu oil to be very soothing and my doctor thinks it helped me make it this far without a radiation vacation. She was pretty sure I would need one. Now I am using Medihoney, the emu oil, a special dressing, and a prescription from my RO. Now that my skin is compromised, the usual creams/gels burn like crazy. I learned not to use aloe on my broken skin the hard way. Big OUCH!

Heart--I share your pain. It is truly horrible, isn't it? My RO gave me a dressing yesterday in addition to my prescription, and I can also tolerate emu oil and medihoney. I am hoping the medihoney shortens the duration of healing. There have been some good reports that it helps with wound healing. It is awfully sticky, though. Percocet has become my friend, especially at night. Don't you wish we could just fast forward to the time when we will be out of this and healed?! Every time I feel sorry for myself, though, I think of the man I see every day who is getting radiation to his esophagus and has horrible sores in his throat. He just had a feeding tube put in and will get it out after he is healed. His cancer is gone but his throat is a mess! Very painful! 

I plan to lay low this weekend. My RO is hoping for some improvement by the end of next week. This darn radiation continues to work even after our last treatment so healing can take some time. We will get there, though, right?!!!

Gentle hugs,

Linda 27/30 (Idesim 9/10ths done!!!!!)

For those who have bolus daily, how many zaps each day and how many with bolus?  I have two different bolus, and I am zapped twice with each daily.  That concerns me a bit since I'm just at day 5.  I have 6 total zaps but two are naked zaps.

My RO did say halfway through we would change my fields around so I didn't get too much radiation in one area.

Idesim--My best friend lives in Boston. Her apartment is on the marathon route, about five miles from the end. She and her husband were watching on Patriots Day, as many, many people were. The bombings were so traumatic for all Americans but especially for you Bostonians. Such a lovely city and a grand celebration - - violated like that! And the injured children really break our hearts. I go to an adult cancer center, MD Anderson in AZ, and I don't see any kids' centers in passing either. Suffering children really put things into perspective.



GoWithTheFlow - - I had two fairly long (to me anyway) bolus treatments each day. No treatment was without bolus. There are different thickness bolus also. You could ask about the total "grays" that you are getting. I think that is the correct terminology. I hope your RO is receptive to questions. We sometimes need the piece of mind that comes with answers or at least need to know the path we are on and why. I hope you have some joy this weekend. This cancer journey is so complicated, isn't it?

Gentle hugs

Linda 27/30

Krista8758, for DCIS I would think bi mast is overly agressive. The rate of recurrence for lumpectomy & radiation vs mastectomy is about the same. But you have to do what you're most comfortable with.

There's some good info about proven lifestyle changes that reduce risk of recurrence also, like reducing or eliminating alcohol consumption, exercising more, maintaining healty weight, and taking vitamin d3 supplements and low dose aspirin.

Goldycat~~I just had my first radiation appointment today. What an awesome team!

They did the ct scan, tattoos, and talked me through the entire process. The RO told me the fatigue from rads is more of a groggy feeling. Not so much like the bone weary tiredness we had from chemo.



I start on July 1, so I still have several days to regain more strength.



I'm looking forward to starting this last leg of the BC journey. Of course, I will still take arimidex for at least 5 years, but that's ok.



Paula

GoWithTheFlow--

Radiating up to the collarbone further increases the odds for lymphadema so I think one question to ask is about your node status pre and post chemo/surgery. The nodes drain into successive areas so it is important to know how far the malignancy may have gone when determining radiation. If there is any indication that those nodes up high could have been/or still are positive, then they radiate there. My RO did not radiate that high on me because the indication was that those nodes had never been positive. At least one node further down had been positive before chemo so my underarm is getting hit. It all gets very complicated and it is ok to not always want all the information. It can feel overwhelming. And while there always has to be some trust in our medical team, they do need to answer any questions we have because it is our body so ultimately the treatment decisions are ours.

Cricketsandfrogs--I teach flute so I understand your concern for wind. My breathing has held up well through chest radiation, 27/30 done, but my RO said pleurisy can be a complication, usually two or more months in the future. Any pain breathing and I will call immediately. It is treatable. I hope your lungs fare well throughout treatment!

Linda 27/30

cricketsand frogs, you need to sit down with your RO and ask about potential lung damage.  Mine had no problem telling me that the very top, a small percentage, of my right lung will have some damage that should not noticeably affect me.  I also asked about my heart, and he said that my heart is "a zip code away from the beam."  Whew!

Everybody is different as to where the focus of the radiation is.  You have a very valid concern; ask your doctor.

Carol

Lin, I know they biopsied two nodes when I first went to the BS.  Both were positive.  Chemo killed everything, nothing showed up in pathology after my surgery.  they removed 6 nodes and nothing was found.  I know my tumor was large, not sure of the size.  Will check on that monday.  It was also very aggressive and painful (pulling nerves under my arm because it grew so fast) and I"m triple negative.

My MO said they are radiation such a big area because there was so much cancer in me when I first was seen.  I know that my surgeon and both oncologists all agreed I needed radation and they've given me very good care so far.  

But I will talk to the RO this week

cmbernardi - so glad for you that you haven't had the fatigue or skin problems.. I will be on one of the same meds as you -anastrozole..scares me as the side effects look dangerous...but why borrow trouble worrying about it, I guess.

Hi Ladies,

Please I need some advise. I am stage IIB with 3 positive nodes.  Had right breast mastectomy in Feb, started chemo mid March and my last chemo will be this end of July.  My BS said I don't need radiation, but saw RO this week, will need 6.5 weeks of radiation to start in Sept.  I was hoping no radiation so I can live my life again. I am deciding to go with radiation or not ? any thought will be appreciated. 

sciencegal -- thanks !!

I'll do whatever it takes.  I am scare to start radiation after reading all those skin S/E that some of you had to endure.  Especially I'll be working during the tx.  I wonder how you girls deal with working and S/E ??  any tips ??

thanks!! 

I was scared too and so many girls on this thread are having such awful problems, i wondered if it was everyone?



I started a post, "did anyone come through rads wth their skin okay"? and lots of people wrote in that yes they did, just minor pinking, etc. I will bump that post up for you.



It helped me to get some balance, to see that it might be ok or at least not horrible.



I sure hope we both can go through without such bad problems as some of the women on this thread are having. My heart goes out to you who are suffering. At least, if that does happen to me i will know what to expect.



Healing wishes.