Spring 2013 Rads

Cindy...I spent almost two hours on my count down calendar! I posted it on Facebook. I started a Pilates with stretchbands Dvd so I was sore this morning before treatment. It is so uncomfortable still how my arms are propped up! I had to make them stop. They suggested I take Motrin or something prior. Been lubing and free boobin as much as possible. Praying it helps! One more sleep and treatment in the morning then head home! I was in tears yesterday talking to my lil guy....he doesn't understand where Mommy is...breaks my heart! But tomorrow I will get home in time to pick him up from Preschool....can't wait!! Hope everyone has a great weekend. Congrats Betsy for being all done!!

Hi rasberry, that doesn't sound high to me. I'm gettting 50.4gy over 30 treatments (which I am told is standard) then more in 5 days of electron boost (I forget the dose of the boost tx) because the surgical margin closest to my skin was only 2mm. Just sounds like your regime is more accelerated since you getting all of it over 3 weeks.

Raspberry, welcome!  I am 49 1/2, also "young."  I got 60 grays, 2.0 each day X 30 days (5 of which were boost, same dose but smaller target).  My RO said that was pretty standard but maybe she's wrong!  She might have been a smidge extra aggressive because I had a dot of cancer in one node, and the beam was wider to take in the axillary region.  My skin held up fine and the fatigue never hit me that hard; some days I take naps and crab at people.  I used 99% aloe jelly during, 1% hydrocortisone + calendula cream after, and Aquaphor a few times on the nipple when it seemed a little flaky (I mean that literally, but it wasn't scary).  No free-boobing except to dry the aloe when I had time.  I did get kind of red, a bit tender, and pretty itchy, and I'm still a little itchy 4 weeks after stopping, but it's minor.  The tenderness peaked in about week 2 or 3 of 6, then eased.  Although it took a lot of time, I enjoyed rads in a weird way because I made it different every day.  In my case that meant a different person driving me each day, but other people do like CLYDAY and RMlulu/Cindy and make a calendar of treats and fun stuff.  Holding my arm over my head for mapping was the hardest part.  I had two different days of that because my center was new to deep inspiration breath hold, which they did for me, and they had lots of practical details to figure out.  After those mapping times, it was a matter of minutes including everything, and my arm didn't mind at all.  Just got itchy as soon as I knew I had to lie still!  I got good at sending my mind somewhere else in my body, away from the itching.  Held my breath 2 X 25 seconds or so during main rads (which was on the left and axillary, not the same for everyone), not during boost.

I'm quite interested that your surgeon said not to bother with Tamoxifen.  Have you met with an MO yet?  I'm meeting my new one on Thursday and I assume she'll say Tamoxifen + Lupron (ovarian suppression), but perhaps not?  Our diagnoses and age are similar except for my micrometastasis.  I'm more nervous about hormonal therapy than I was about rads.

Thank you all for your replies and warm welcomes! I really appreciate it  This is one place I can talk about it without boring people who are in a different headspace, as it can be in the real world.

Like you, RunFree I was more afraid of Tamoxifen than radiotherapy, because I fear depression more than cancer, so I was quite relieved when my surgeon said I didn't need to take it. I had no idea how bad clinical depression was until I got it and I never want it again. 

Runfree, you said you enjoyed rads in a curious way - I know what you mean, so far I have found a way to "enjoy" each step in the process so far, count my blessings and finding silver linings, which there are - for example, both boobs are the same size now as my surgeon took big margins from my larger breast that had the tumour, so that worked out nicely.

I also kind of enjoyed the processes of the operation, and found the nuclear medine scan interesting, even the hook wire on the morning of the op, watching them put the wire into the tumour on the screen. I hope I find rads as interesting, and the machine.

But having got off the Tamoxifen now I am wondering about radiotherapy? Yes, partly fear, but especially worrying about overtreatment. When I was first diagnosed they said "if you are going to get cancer, this is the one to get". I had no idea what they meant except that the biopsy was very much grade one, low mitotic count, mild neomorphism.

Post operation I read my histology thoroughly and found out I had tubular subtype of IDC, which is only 2% of cancers and not as well researched because numbers are smaller to get information from, but it appears it is about half as active as most grade 1 cancers. For example 30% of women having their sentinel lymph node removed will have something found in the node, but only 15% of women with tubular will have cancer in the lymph node. It rarely travels, but can kill, of course. Mine is absolutely typical right down to the description of the tumour and the fact that it was next to some cribriform in situ cancer, which brought up the actual area to 2cms in all (the tumour was 1.6). Its neomorphism had gone up a notch since the biopsy sample, so it was a 2 instead of 1 on the scale, but still put it all into the Grade 1 category, just. 

This may be the reason why I have, what now seems to be, a lighter dose of radiotherapy coming up, but it is at a rather high daily dosage at 3 grays. And that can have a worse outcome ten years down the line, according to some research.

But hearing what you are getting Runfree and comparing it to mine, seems to make a kind of sense, with your dot of bad stuff in the lymph node and my tumour being bigger, but a fairly slow cancer.

Thanks very much for all your advice and encouragement (Cindy - thanks for your upbeat intro ). I think I will feel much more comfortable when I find out why exactly I have been given this particular regime. I will pester the Radiation Oncologist some more about "why".

What is an MO? a medical oncologist? is this also a kind of doctor? what role do they play in treatment?

My main problem is right now, a month on, my lymph node incision has only just healed over as it was infected and oozing up until a couple of days ago and now it looks settled down but has a really painful tender, very tight, hard lump around and adjacent to the incision site, as well as a strongly corded vein leaving that area running down the side. I feel like its all blocked up, or else the hard bit is indeed some more gunk trying to get out. Not sure what to do. Nurse said anti-biotics, my GP said hot salt water soaks - which got it to heal over but now something is trapped under the healed bit . . . our bodies can just get rid of stuff like that without it being lanced? 

They won't give me radiotherapy if I am not completely healed. 

Raspberry, that cordlike thing is most likely cording, a pretty frequent result of sentinal node, or, I guess, any, surgery.  Apparently, it is a blocked lymph vessel and a lymphedema therapist (specially trained physical therapist) can teach you how to treat it.  Gently stretches and specific massage techniques are the mainstay. You really want to ask your BS or MO or RO or PCP for a referral.

I believe the theory is that these things go away by themselves.  Mine went away just a couple of weeks ago, after a lot of coming and going, and, I suppose, might still return from time to time if I overdo.  My surgery was January 7, so, even with guidance and treatment, that's a long time to have limited motion and compromised lymph flow.

Where I had my surgery, the lymphedema ladies are trying to educate the breast surgeons that every patient should have a post surgical meeting with one of them.  Apparently, all the surgeons except mine are pretty compliant.  Figures!  It took me a while to get there, but, boy, am I glad I went--so much information these ladies have!

Thanks for the welcome and the tips RMlulu. I will definately ask for the pictures. I had such an ordeal over chemo/no chemo that when it was finally was resolved I just sort of went to radiation rather spent. Glad to be gathering information on this part of treatment.

Kkuziel... Thanks. I had a positive node..just over a micromet.. Many different opinions .. Yes and No on chemo. But went to Dana Farber and got a no so went with that. Now my MO said they never do chemo after radiation but yours was looking at that. It STILL amazes me how all over the board treatment options are!! And my MO is MGH...different from DF. Crazy. It does make it tough mentally to get yourself to a healthy, healing place.



Glad you feel good about your decision and thanks for the info on rads. Think I will be fine with it .

Lenn13ka, I was told same thing, if you need chemo you always do that first. That's why I was so blown away by his reversal in May. Did lots of research on both genetic test I had done as well as the studies about the "chemo window" and decided to go with the first test and his initial recommendation. All this info and decision making can be overwhelming. No wonder people become numb with fear on a cancer diagnoses.

i have not been on awhile glad to reconnnect have 8 more boosts to gofeel like the nipple is going to fall off all i can where is silk i spend most of the time in the dome freeboobing just got a huge tub of silvadene boy is that helping. how do u get it on your back?RMlulu where in tx are u? well i.m on the down word slope now thanks to everyone

love and light chris

You are almost there, yay! I found the boosts to be super easy. They gave me Silvadine too when the skin got raw and it was oh so soothing! It heals up quick.



At one point my RO asked if I wanted a prescription for something for the itching - guessing that's the 2.5% cortisone? I said no because I was doing ok with the OTC cortisone cream and emu oil. He also said if it's keeping you awake, try some Benadryl at bedtime. It's an antihistamine so helps with itching, plus it tends to make you sleepy so you can sleep through it.



One caveat though, depending on how far out from rads you are, you may have started on tamoxifen by now, and if you're taking that, then don't take Benadryl. But for those still in treatment, passing it on, maybe it will help.

Runfree16..... I never really got itchy so I can't really advise you there. The one time I was rashy and itchy under my boob, it quickly changed to just peeling skin and the itching stopped. Saw my MO yesterday when I went in for my Herceptin and she told me my skin looks better than expected and I'm way ahead of where I should be as far as healing goes, especially where the eight boosts were. Great news!

As far as fatigue goes, she told me to expect maybe three months of tiredness before I really felt normal again! Wow! I can't predict my fatigue. I never know when it will hit, but when it does, it does!!! I still don't understand why rads zapp you so much.

hi all,



I'm a week and a half out from my last boost...... YEAH HAPPY HAPPY DANCE!!



Based on what I've heard from all of you my boob did really well.... I might even have to start forgiving it for getting cancer in the first place. I got a red strip along the top and a red strip under the boob (which are now pale brown) from the whole breast zaps... and my scar got deep red during the boosts and is now a pale pink after peeling a few times.



I don't know about you guys but I was scared to death during the first boost. I wasn't expecting all of the changes in how the procedure went.... they marked the area all around the scar with a sharpie (which both hurt and itched) and then put these big metal rings on the rads machine..... which was pointed straight down at the middle of my chest..... and then when they lowered the machine part of the metal frame ended up touching my skin....... YIKES....... I was really worried about damage to my chest and heart.... I asked the techs and they said my boosts were different types of rays that only went into the surface of the skin (which my doctor confirmed in my next appt)... but can't they tell you this stuff in advance not when you're half naked on a table....



oh well I'm just venting..... but it's over now