October 2010 rads

ranafazal

CT124

Feel pretty OK so far..take T at night so maybe the side effects aren't so noticeable, and infact, have been sleeping better of late.

Bopeep- you really are courageous...all the best with the chemo.I'd like to put up my pic too,but am tech-challenged so it's going to be difficult.

Joan- will write how the first rad goes on the 6th.Do write if you feel any SE from the hormone therapy.

Is anyone on this thread from Canada?I live in Toronto. 

1marmalade1

I live in Brampton - starting rads tomorrow, the 27th.  Did 6 rounds Tax & Herceptin, then left mastectomy (developed incision infection).  Am looking forward to starting AND ending rads!!!  Herceptin until next April.

There are lots of Canadian girls on these threads - I'm sure more will be joining us in Oct. rads soon.

ranafazal:  Which hospital are you dealing with?  I  had chemo and surgery at Brampton Civic, will be doing rads at Credit Valley in Mississauga.

Barbarjud

Just finished  4 AC's and 4 Taxol rounds.  Meeting with the radiation doc oct 13.  Waiting for the Energy Fairy to show up.

Roberta2

Cindykaw--I was a sleep for the port placement and removal at my request which my surgeon had no issues with.  Week out from the port removal and everything is good.

Regarding Tamoxifen, my oncologist will not start this until after rads are completed which should be around mid November.  I think I am going to ask for a month or so off and start it in January if the onc. does not have an issue with it.  I need a break really bad.

CT124

bopeep-you are right, we do need pics. will try to figure out how to make one appear. It sounds like u have found a good facility, so they prob have options we might not know about. There are so many new drugs and protocols in the pipeline. I plan to do genetic testing after all this and while I pray that she never has to go through the treatment process, I know that many more options will be available. I am glad that you are going to stay a part of this group. I am in CT, have 2 children ages 23 and 21 and a husb of 26yrs who wants a divorce so this journey has been complicated, however, this journey has made me stronger, and as long as it is not the 2 weeks after chemo, I can deal w anything.It sounds as those who have had last chemo recently are still having some SEs. Hopefully they get better before rads start. Anyone w an expander? I had BMX and am concerned ab lymphadema and tissue shrinkage w expanders. My PS put 250cc in each side a couple of weeks ago and had a little hand swelling-not sure if it was the expander compressing something-arm and hand felt really tight a couple days after expansion.

I look forward to hearing how you rads go. I will not be starting til middle of mo-will have sim next week and then will know treatment plan.

DesignerMom

Hi Everyone.  I had my last chemo Friday.  Whooo  hoo!  I can't believe I finished.  I had my rads simulation and tattoos last week and should start in about 3 - 4 weeks.  I have a question for all of you who have recently had your rads set ups.  I will be doing mine face down.  Some people say their breast hangs through a hole (thereby sheilding more of the body).  They also said they had a mold of their breast done.  My table seems to just have a square hole (a lot bigger than my breast).  They didn't do a mold either.  Just wondering what others have experienced.  I look forward to learning together and getting to know all of you as we saddle up on this new, wild Rads horse!

pomegranate

Hi Ladies,

I went through lumpectomy, SNB and rads in 04. NOW, my baby sister (she's the youngest at 51) was diagnosed with invasive cancer in breast (found on mammogram). She just had a lumpectomy and SNB last week. The surgeon is recommending rads done with a catheter, localized for2x a day for 2 weeks. This would be done if the margins are good size. She will get her path report and meet with surgeon next friday to discuss how rads would be done.



Has anyone else heard about this catheter type radiation? It's new to me--and I'd like to make sure my little sis gets just what she needs.



Evidently, when they did the MRI biopsy, they stated that the cancer was 1.4 centimeters, stage 1.



Any help with this would be great.

Thanks,

Pomegranate

CT124

designer mom

this is the first that I have heard of this-going in a week from Mon for my tats and tx plan.I had been on sept rads but was delayed w tx. there is a lot of good info there and u may want to ask that group if anyone did this-don't recall anyone mentioning it.

LtotheK

Roberta, I am so with you.  I feel like this barrage of treatments is making it so hard for my body to even find a new normal.

I'm reading the radiation treatment options, and everything you all describe here falls well within the parameters of the latest methodologies. Mine is really straight forward, and probably old fashioned by comparison:  on my back, six LOOOONG weeks of daily treatment.  They are working towards the shorter treatments, and better delivery (like lying on the stomach), but everyone's got their opinion.  I'm at an NCI designated hospital.  Other hospitals do the catheter treatment here in town.  My feeling was, it's already a pain in the rear, shorter treatment wasn't really so big a deal to me as having to switch doctors.  Lower toxicity was my biggest concern, and having done somewhat thorough reading, I realized that I simply don't have the time to get multiple opinions and weigh all the delivery methods here in town.  So...I'm moving forward with what sounds like "gold standard".  They offer different delivery methods at my hospital, depending on needs for the heart.

ranafazal

 Hi Marm..am getting the rads at Sunnybrook Medical Centre.

Never even knew there was this catheter treatment..like MHP70, am doing it the old-fashioned way, on my back, right hand up, for 33 sessions.Will be asking the onc. about it though about the facing down position as it seems to reduce toxicity.

Did anyone have a sort of a heavy ache in and around the breast after the CTscan and tattoos?

Please keep us posted on this and Pomegranate,please convey my good wishes to your sis.

1marmalade1

Just got back from my 1st rads - From arrival time, meeting with rad onc for final go-ahead, and set up and treatment...in and out in exactly ONE HOUR!!!!  One of the techs said it had to be a record LOL.

Techs confirmed I am set for 25 tx - no boosts  (btw ranafazal, on my back, left hand up!)

AICa

I'm in the Sept. group but will continue treatment into November (28+8). I had BC in my left breast 21 years ago and now have a different BC in the right breast. I had chemo and radiation at the same time back then; and chemo continued for 6 mos. You bet I was exhausted. I had no aftereffects to my heart or lungs. I have fair skin and had significant sunburn and some blistering; staff didn't offer any skin care suggestions back then. Now, I'm putting on aloe 4x daily; it's supposed to heal radiation burns per articles on line; and there's a recipe for saltwater compresses in the Sept. group.

Last week, my Rad Onc explained that the cat scan is to show the location of the heart, lungs, breast tissue, etc. My treatment is at an angle - two bursts from a low angle up across the chest; then the machine moves and exposes me at a downward angle, high to low. I've finished 5 of 36.

I thought this would be easy compared to last time; but I'm finding it very difficult emotionally. It brings back bad memories, reminders of the great risk to me and my daughters, and thoughts about missing my Mother, who died of BC, and my sister, who died of ovarian cancer.

Day at a time...

LtotheK

AICa, I'm so sorry to hear you are having a hard time.  Honestly, I can only imagine.  I am thrilled to be alive, thrilled to have had access to top-class medical care, thrilled to have a rich life that helped me get back on my feet fast.  But I can't escape the "monkey on the back" feelng, knowing that BC is two-fold:  the cancer they try to cure when you get it, and a body that is fundamentally built to create it in the first place.  I got off easy:  four TC, small tumor, stage 1.  As I've said on other boards, I have a new respect for women, and that's an understatement. To be facing this again makes me feel so much for you. 

One thing that really t-ed me off about my medical team is that the oncology part of this didn't push me to get the outside help I think I really need:  naturopathic, PT, psychotherapy.  I sought the first two on my own, now I feel it is high time to attend to the latter.  Honestly, I feel like a factory reject these days.

See if you can get some of the other ancillary parts of this attended to to feel more in control.  And at least know that we do deeply feel your pain.

CT124

AICa-sorry to hear that you are dealing with this again personally and  with other family members. I agree w MHP70. The MDs are focused on treating the cancer, but there are so many other areas avalable also. I have started working w a therapist, support group, and looking at naturopathic options as well as some meditation, gentle yoga/stretching classes for BC pts. had a little hand swelling-possibly from expansion or poss early lymphadema, but showed Onc who wasn't terribly concerned-was more concerned w wbc but for me both were a problem. I will start rads in ab 2 weeks and am worried because so many people have said that it is so much easier than chemo etc. I don't think anything about this journey has been easy and if we are not our own advocates who will be. I think we need to find the right combination of resources that helps us get through this. The women on these discussion boards have also been a great source of information and support, This is one place where we can go where everyone, although we experiences very different responses to treatment, understands what we are going through. Thank you all for sharing.

designer mom-there is an older discussion board that talks about face down radiation. was very interested after you mentioned it and will ask my ONC ab it. I need L side rads and it looks as though this protects lung and heart tissue more. Unfortunately, it looks as though the closest place doing it for me would be NYU.

fayebu

Hi

I went for my Cat scan last week. I will have my dry run and get my tatoos  on Friday. my radiation treatments will start Oct 4. I will be getting radiation on my left breast and I will be on my stomach. My radiation doctor recommended this position stating it is safer for the heart and lungs .

DesignerMom

fayebu-Your plan sounds exactly like mine, left breast, face down.  Quick question, did they do a mold of your breast?  Mine didn't.  Is there a hole in the table?  Mine just seemed to have a rather large square cut out.  I'm just wondering how they can "shield" with that large, open space?

fayebu

No, they did not make a mold of my breast.  There was a large square cut out and my left breast and side was was angling downward and my my right side was higher . I hope that makes sense 

DesignerMom

fayebu-  Same experience with me.  Thanks for confirming your experience.  I guess it's "normal"....as normal as any of this is!

I just watched Dr. Oz (droz.com 9/28).  Very interesting and relevant to us.  He had a doctor who specializes in thyroid cancer and also the former head of the Amer. Cancer Soc. (who is a BC survivor).  It seems that thyroid cancer is the fastest growing cancer among women.  Dr. Oz recommends asking for a thyroid shield when you have dental x-rays or mammos (not just the lead apron, a shield that covers your neck).  They said if you had 5 dental x-rays in a year, you were 4 X as likey to get thyroid cancer.  The BC survivor (who had rads) says now that she has had so much radiation, she always asks "why is this x-ray needed"?  If it is just routine, she declines, says she doesn't want any additional rads that could cause cancer.  I hope this doesn't stress anyone. I am going to ask if I can have a thyroid shield during my BC rads.  Unfortunately, it is up to US to protect ourselves.  My doctors just do whatever they have always done.

AICa

I have a therapist, and she has helped a lot by encouraging me to speak to the people who are treating me. I went to my appts. last week with notes in hand. The rad techs (women) and nurse were wonderful. The nurse said that I am in control of my treatments. We all know that's not really true, but she validated my feelings and is helping with issues that concern me and that can be negotiated. 

The male Dr. was not empathetic - told me I'd get used to it.

mamaof3bugs

Hello ladies.  I need to apologize for starting this thread and then not posting at all...it's been a crazy couple of weeks.  Today I had my first radiation and I cried.  The treatment itself of course was no big deal, it was the fact that once I am done with these 35 treatments I am done.  No pills for me, I am a triple negative so this is it.  I feel like I have been fighting this disease for the past 9 months with such intensity, how in the heck am I supposed to just walk away and be okay with that?  Anyway to say the least it is bittersweet, on one hand I cannot wait to be done with this nightmare but on the other I worry that I haven't done enough.  I guess only time will tell.  xoxo, Angi

mamaof3bugs

Oh and I forgot to add that my rad onc prescribed Radia Gel x4 daily to prevent and manage any burning I may get.  I was told to use cetaphil for any driness. 

fayebu

Wow that is interesting. When I went for my CAT scan , they found  nodules on my thyroid  which was confirmed with a ultrasound. Last week I went for a thyroid biopsy. I have no received  the results yet  but both doctors( radiation and oncologist)  told me not  to worry . They said a high percentages  of them are benign. I have heard that before !  I am definitely  going to bring it up again  when I see my radiation doctor.. Thanks for the  info DesignerMom

BocaCiegaBabe

The thyroid cancer thing with women and why it's happening is certainly a huge question mark!  Hopefully they eventually find the reason for the increase, but I wonder about radiation being the culprit, although it probably doesn't help.  Still...I know of 4 people (all women) diagnosed with thyroid cancer and all but one (Including my daughter) was diagnosed in their early to mid 30's prior to ever getting mammograms, and in my DD's case, not much in the line of dental x-rays either.   The 4th woman was early 70's, but it seems to be more a disease of younger women.  fayebu...I'm wishing you well on your biopsy!  The odds of it being benign are something like 95%, but if not, the good of this is that it is one of the most curable forms of cancer, and most easily treated.

joan888

Count me in too.  I am 4 weeks past my last chemo treatment and had my CT and planning session this week with my RO.  I go back next Tuesday for the dry run and start a round of 28treatments on Oct 6th.  My RO supplies Special Care Cream from Bard for free (yea, right) and have started using it to see if I can just get my skin in shape prior to starting treatments.

I have never heard of the face down treatments.  Interesting.  I am getting rads to my right side so maybe this is not an option for me.  I do know of someone who had heart damage from radiation so I am going to ask about it.

Nancy... I had the very tired, heavy leg thing with chemo also.  It actually was worst during my third week after the last chemo.  That was troubling, but this week, I am feeling sooo much better overall.  I am a cycler and managed to ride six miles this morning.  Something I had not been able to do in a while.  Hopefully, I can build that up each day.

Looking forward to this group.  One that we would all rather not be joining, but here we are!

Joan

hmh23

Count me in on this group too!  I had my first consultation today with my RO.  I will have my CT Scan on Tuesday and then simulation sometime after that.  NOt very happy that my rads will last 6 weeks,  5 plus one week of boost. 

I was hoping that it would be only 4 or 5 weeks and for some reason being told it would be 6 has hit me hard.  I've managed to be pretty strong over the past 9 months since diagnosis and I just wasn't expecting 6 MORE weeks.  So here I am looking forward to gaining strength and encouragement from this group.

Heather

QCA

Hi everyone.  I'd like to join this October group also.  I had lumpectomy 8-18 and re-excision 9-1.  No chemo because my oncotype-dx score was 11, so it's on to radiation.  Today I had the simulation and CT scan, and got marked in several places (no tattoos yet and wouldn't you know I forgot to ask).  I am scheduled for about an hour long appointment, including the first treatment for October 5 and figure I'll be finished November 12, allowing for the Veterans Day holday.  I'm having 33.  In November I'll go back to oncologist and be prescribed arimidex or femara. 

My radiation will be on my back (on left breast) and I'm told that a small portion of the lung will be exposed, so trying not to be overly worried about that right now.  

I was very worried about having to lie on my back because I have severe sleep apnea (use a bi-pap machine) and my airway closes when on my back, but with the headrest and the short time of exposure it'll be okay.  

I wish all of us well as we begin the next part of this journey we didn't want to take!

Roberta2

Dow anyone know the answer?

 Example:

If you have right breast rads, is this harder on the heart than the lungs?

If you have left breast rads, is this harder on the lungs than the heart?

Or does it really matter?  I am thinking they both will be affected to some degree but was just wondering if it made a difference of which breast it is.

JFV

Hi all-  My rads onc said to me that chest radiation would slightly increase my chances of heart damage.  She also said that they have smartened up when it comes to rads and no longer radiate you straight on like they did years ago.  They come in at a sideways angle and that has greatly reduced the amount of damage done to the heart and lungs.

quiche

Hi All, Just checking in. I took a few days of R&R before heading into the world of rads. Met with my med onc yesterday and meeting with my rad onc today hoping to get started next week. Thanks to everyone for all the info. I'm armed with questions and will let you know how it goes.

I'm 2 weeks out of chemo and still feeling some of the effects. I was relieved to hear a couple of you mention the 1000 lb leg syndrome. I am so feeling that, feels like my arms and legs are full of lead. I was afraid it was just me. It's somewhat comforting to know it's a fairly common symptom and will eventually end.

I will be taking Famara and my onc said I should start taking it right away. I've been reading conflicting info on that. Some recommend waiting until after rads to start the hormone treatment. Wondering if anyone has a particular opinion or info on that. I tend to trust the info from this site over the docs many times.

I will also start seeing a lymphedema specialist. My right arm has been swollen to some degree for the past 5 weeks. Hoping that's another chemo thing, but better safe than sorry. I'm at high risk for lymphedema and it will be something forever at the back of my mind. Glad to be on top of it. I hear the earlier you catch it the easier it is to control.

Thinking good thoughts for everyone every day and thankful to have you all as part of my medical team :-)

Hugs,

Lorraine

bopeep

Quiche,

Glad you're taking femara, I think it's the best of the 3 AIs with the least side effects.  When I started it 4 years ago my SEs were minimal, just the hot flashes and a little aching in my ankles at night.  After a few years I started having some serious bone loss and pain, so be proactive about getting your bone supplements and Vitamin D.   I finally went off femara and I think that is what triggered my recurrence; looking back if I had taken just a two-week break I would have been fine, because later on when I restarted it again I had no SEs at all.

A good massage can solve the lymphedema problem...I never went to a specialist.  One night when I was on the telephone my husband grabbed my arm and started a massage, he seemed to put his heart and soul into  it.  When he was done my arm felt fine and I never had another symptom. 

BTW, I'm outta here for a while and back to chemo, but I'll be checkin on ya!!

XXXXOOO

Bo