Team ILC Warriors

lemon68 · March 2013

Thank you everyone, yesterday was a great day for me. RO called today wondering why I hadnt called him.. Still waiting on BRCA results from MO, silly as they are right across the hall from each other. He is hoping the results will be in this week and if so rads for me on Monday. I have had no anxiety about the rads I feel pretty calm about it, not sure if thats a good sign or not. With what I have seen others go though with rads and those of you with the chemo, I am choosing to be a Rad Warrior. It does feel good to almost be getting the show on the road.

Kestrelgurl- midway though TE !! That is great news, your half way there. Are you having any pain? Are you happy so far? I am sure you look beautiful.

Joellelee - 3-5% doesnt seem to good. I will ask about mine but since no chemo and lumpectomy only I would image its higher.

Choochoobella- Thank you!! My back does bother me but it doesnt hold me back from doing things. I have pain killers to take if it gets bad. They asked me if I was in an accident to have this issue, I feel down the steps. Landed on my cushy butt! I think I sit far too much. I work at home and sit at a computer all day. I am sure some excerise would really help, I am lazy in the winter but need to get up and get out!! Wish I had someone to drag my butt out the door. Thought I might get involved with yoga or one of the groups at the Cancer Center that they offer.

xoxo

kestrelgurl · March 2013

Lemon,

To let you know, I have had two surgeries on my lumbar spine; a microdiscectomy in 2008 and a fusion in2010. My surgeon is amazing and I have little to know residual issues. So there is hope.

I do have some chest and back pain feom the TE's. I have very small expanders (250cc) and got another 50 today.....only 75 to go!! I do have a thread on the picture forum and will update with new photos tomorrow.

So far, all is going well and PS is very confident in a good post-rads result.

The scariest part of rads for me was actually being "strapped" into the rack while the robot whirred over me. I think they did 5 fields and I wasn't prepared the first time for all the movement. Then later I worried that the sequence changed but the techs said no. They used a bolus about every 3rd time to protect my boney chest.

lemon68 · March 2013

Thank you for sharing that kestregurl I am really hoping my back never comes to that. They want me to do PT but I cant do PT and rads at the same time. Priorities... I will need to go and look for you on the picture forum. You are lucky to be tiny, I am assuming also athletic?

So funny my husband just said to me "they would have to strap me down to give me radiation" and I said, they dont strap you down..lol Crazy that you just posted they DO, I will have to go and tell him. He is more nervous than me. Just told my parents we werent doing Easter this year as I wouldnt be up to it.... who knows how I will be? I am pretty tough. I think the hardest thing for me is to listen to my body and if I need rest/sleep to do it. I tend to be a horrible patient and need to learn to put me first.

xo

suzieq60 · March 2013

Lemon - for breast rads they do not strap you down, you just have to lie still.

For anyone worried about the risks, they aim away from the heart. I've had rads on both sides and have suffered no long term trouble at all. I think it is worth the risk, if any.

claireinaz · March 2013

Dear ladies,

I got the call from my gyno yesterday who confirmed I'm indeed in meno (yay--less estrogen driving the cancer car) and my CA 125 test levels were, to quote " really, really low". So good news.

Re rads, I was glad to get them after talking to my RO. MD Anderson in Phx recommended him and since he was closer to my home than Phoenix, I felt confident. I wasn't strapped down at all! They just rubber-banded my feet kind of loosely to keep my legs together. I had a total of 33 tx. I used the rx cream they gave me for free at the facility, along with Vit E oil (I punctured capsules and squeezed it out) and aside from a tiny bit of peeling, a bit of itching, and a sunburn look on my upper right torso and upper right back (where the scatter rads did their thing) I came through just fine. I imagine most women do.

The worst part was driving to rads every day since the facility I chose to use was 45" one way, but it was a beautiful drive, and I never had weather issues. My husband and dog would go with me a lot and we'd hike afterward. I didn't notice any real fatigue but I do remember that towards the end when I'd get home I'd curl up on the bed and sleep for an hour at least--but wake up feeling great.

Claire

AmyfromMI · March 2013

Great news Claire! Thanks for the insight on your rads experience. I start on Monday although that's just consult, sim and tattoos. I imagine I'll be starting later in the week.

I hope everyone is having a great day! 😊

kestrelgurl · March 2013

To clarify, I was never strapped down during treatments, but the process of getting in the position and having my feet tied together was a bit unsettling at first.

Everything I hear about chemo treatments is that they take place in a warm, friendly and nurturing environment.......pretty much the polar opposite of the sterile, mechanical radiation experience. Although the staff was very nice, it's hard to negate the coldness of radiation.

Does that make sense?

jojo68 · March 2013

Hi Lemon! The 3-5% benefit my radiologist mentioned to me was not just for my breast cancer, but for all breast cancers! He is a world renowned radiologist. He wasn't trying to steer me away, he was giving me his honest opinion. He still thinks rads are worth it, not me...not for a measly 5% tops. He also said that even if they steer away from the heart, there still can be quite a bit of residuals on the heart! Also, of course, lung and thyroid damage. Have you researched the risks vs.benefit?

kar123 · March 2013

Radiation can reduce recurrence by 70%. As with anything there are risks and complications. They are usually pretty low. They have come a long way from the heart damaging days of the past. This info is not from my RO it is found here on this website in the Radiation Therapy link. You need to make your own decisions. When doing research on this subject, make sure you are really vetting the websites you use. Websites Like Breastcancer.org with ".org" are usually reputable. The American Cancer Society website, Livestrong (regardless of your feeling for Lance) are also very good websites for gleaning info on treatments. One persons experience may not be your own and even if your diagnosis is excactly the same on paper as someone elses...yours is still uniquely yours.

Lily55 · March 2013

I just found the website breastcancerchoices.org and it supports what joellelee says - i now have heart prob symptoms and need to follow that up - i think statistics are skewed everywhere.........feeling ver y flat now.....

suzieq60 · March 2013

I just went and checked out that website Lily - looks really dodgy to me. No information about the people who run it and this disclaimer:

"The editors of this site are not medically-trained.
Please consult your licensed health care practitioner before implementing any health strategy"

kar123 · March 2013

A 3-5% benefit from radiation vs 70%? I did not find that on the site you mentioned. As I stated, radiation is not risk free, the risks, however, are relatively low. I just think we need to be careful when poo-pooing others choice of treatment. Just like no one here is saying everyone must go with chemo or radiation, we are just giving our experiences. I saw a comment earlier in the thread saying that chemo was "toxic, it was not effective, and it damages your immune system so that if cancer came back it could not fight it" (My immune system came back fine BTW fought off all but one of the stomach bugs and colds that my kids brought home this year and didn't have nary a sniffle for 2 years after chemo). When chemo/radiation is the choice someone else made for their treatment we need to be careful of how statements like that could make someone feel.

Lily55 · March 2013

The sources and studies quoted on that site are genuine and serious though - i had rads and am not crítical of anyone other than that we are not given all the info and comparable statistics

lemon68 · March 2013

Okay, I misunderstood so I wont be strapped down good!!

I actually like to hear the good the bad and the ugly. And all experiences and feeling towards all treatments. I know we are all very different yet we share a common bond with each other no one knows accept those that have been though it. Exactely why its so important to have each other.

Before I was DX If you would have asked me I would have said chemo was a toxic poison that I would never let run though my veins, I beleived chemo killed not the cancer. Now with education I know that chemo is dangerous and can kill, I also know that it saves lives everyday and if I needed it I would get it also. Risk vs benefit, I had no idea and had never had it cross my life so intimately.

I have my questions for the RO concerning Risk vs benefit for me. He did tell me my thyroid and 10-12% of my R lung would get splatter, in addition to about 2 ribs. Scary? Yes but I have a isolated tumor cell hanging around and I am in the thinking if theres one there are more, if there is anything there I want it gone. I dont want to do this again in a couple years. No oncotype test for me so rads is my only option and the dreaded tamoxifen. My decision for that is undecided. So, today I called MO for brca results, nurse called Myraid and they said they have completed my test! Should be faxed to MO tomorrow.. I am not nervous I just want to get the show on the road already. Either straight to rads or straight to PS for DIEP.

Claire- what GREAT news for you today!!!

Kestrelgurl- I did go and see and your beautiful just as I knew you would be. You are in great shape. Your PS is doing a wonderful job. I am shocked you had rads, cant even tell.

Rdrunner · March 2013

Lily those studies are also 12/13 years old. I also respectfully disagree re the risk benefit comment for all breast cancer. One has to remember there are so many variables to take into consideration. Its not black and white and one also has to consider the context. Of course there is risk with any cancer treatment, but with technolgy those risk are being minimize constantly. heart disease it the number one killer of none cancer patient also

suzieq60 · March 2013

My risk of recurrence was 23% without chemo - having chemo halved that. Now I was node negative, but HER2 is so nasty the risk of recurrence far outweighed any side effects one might have. I'm 3 years out from chemo and absolutely fine. Anyone with positive nodes who refuses rads and chemo is just asking for trouble IMHO.

Momine · March 2013

Suzie, the site is run by and put together by the quack who is convinced that you can cure cancer with iodine. it is designed to dissaude people from standard treatment and choose his treatment instead.

Momine · March 2013

According to cancermath, in my particular case, with no therapy I would have a 56% chance of dying within the next 15 years. With just chemo, my mortality risk over 15 years drops to 26%, less than half in other words. With the addition of the AI, the rate drops to 18%. The calculator does not have a section for rads (oddly).

None of this is any guarantee obviously, but I will take the odds of 18% over 56% any day.

suzieq60 · March 2013

I agree Momine.

Lily55 · March 2013

I wonder why cancer math does not include rads - other prognostic indicators don´t include it either.....

I guess in Suzie´s categorisation I am one asking for trouble as I had positive nodes and refused chemo for a huge number of reasons, I am not advocating for this site btw just saying that statistics are mis-used in cancer treatment planning

Momine · March 2013

Lily, I really don't know why rads are left out of these calculators. It may be because surgery and rads are taken for granted, whereas with the chemo and hormone treatment there are several different choices.

Statistics can be both confusing and misleading. However, I really don't believe that most cancer docs will misstate facts. My own docs at least will gladly tell me when they think a treatment is not going to give me enough bang for my SE buck, for example. There is also a difference between overall stats for all cancer patients or even all BC patients and then stats for a specific constellation of tumor characteristics. Certainly any time someone gives you stats, it is important to ask exactly what the stats represent and how they are calculated.

kestrelgurl · March 2013

Lemon, thanks for checking out my pictures AND for your very kind words. I originally thought I would skip recon, but after living flat (w/o prosthesis) for 16 months, I changed my mind. Nice to have the option after rads.

My rad side does look good, but hurts a lot more. However a quick peek in the mirror at my new girls is usually enough to quell the pain.

I have been on tamox for over a year with few side effects. Some fatigue and joint pain.....certainly tolerable. Don't be afraid of it......you may have even less.

Rads was never optional for me, my tumor was right on the chest wall. I don't worry about side effects.....I did what I had to do and that is that.

Gonna ride my bike today.....that means it's a great day!

Lily55 · March 2013

Kestrelgurl - hope you don´t mind me asking but did you have to have expanders put in first before recon? Or did you go in flat and come out with girls in one operation?

kestrelgurl · March 2013

Lily, ask away!

I did not have the option of having TE's put in at BMX. Not sure why, it was just never offered. I did not plan on reconstructing at the time, so I never really asked.

I finished rads 12/28/11 and went flat until 3 weeks ago. I had gotten a PS referral from my RO and went in expecting to hear that a flap surgery was my only option and I had no interest in that. However, PS suggested some pre-TE fat transfers to help mitigate some of the rad damage. Then I could do TE to implants. We did 2 fat transfers spaced 3 months apart and then I had the TE's put in on 2/11/13.

Expansion is going well and I hope for exchange in mid-summer.

It has been a long process and patience is not one of my attributes, but I think I will make it.

I have pictures posted on the picture forum that document my progress.

Momine · March 2013

Kestrel, how can someone see the pics? Not just yours, but in general.

kestrelgurl · March 2013

You need to send a PM to nowheregirl and ask for access. It is a double password protected forum for privacy. A bit of a pain to get there, but worth it if you are exploring recon.

Momine · March 2013

kestrel, thanks. I doubt I will want recon, but would be interested in seeing what real people look like after and not just the ones the plastic surgeons pick to show off.

jojo68 · March 2013

breastcancerchoices.org is not run by a quack at all...Please do your research! NOT, just trusting what the billion dollar cancer industry tells you! Dr. Brownstein is a very well respected doctor who has proven over time how we are all deficient in iodine. Another very well respected physician is Dr. Nicholas Gonzalez who also has cured many breast cancers. Please follow the money trail! Dr. Gonzalez even covers some of the medical cost for his treatments if patients cannot afford it...does the American Cancer Society do that? I think not. I do research on both sides...not just trusting the ACI and this website we are on....cross refernece everything! I am not poo pooing anyones decision for treatment...I am trying to keep an open mind and offer other options I have learned from my zillions of hours of research. We all to just go with our gut, it's all we have. If some of you feel 'standard of care' is best for you, then that's what is best for you! Just not for me...we are all different and must make our own best decisions based on our heart. I ran across an American Cancer Society article last year that said chemo was dangerous and not that effective...I will try and find it...couldn't believe they actually admitted that! also, Livestrong said that as well...xxoo

I also very much recommend the following yahoo groups...Breastcancerthinktank,cancercured,iodinegroup...I have learned so much from people there who have cured their cancers...remission for long periods of time...some with chemo, some without etc...much to learn on BOTH sides!!!

Here is a great article from livestrong...http://www.livestrong.com/article/72328-dangers-chemotherapy/

"The most common types of cancers to result from chemotherapy treatments are lymphomas and leukemias, according to the American Cancer Society."

YIKES!!! I would NEVER trade one cancer for another...I would rather heal my body thru nutrition and detox....build up my immune system so if the cancer returns I have a better chance of fighting it. Many times after chemo, if cancer returns and someone dies...they blame it on the cancer, when in fact the chemo is what kills you...due to the toxicity. The second time using chemo is what is really toxic!

Read more: http://www.livestrong.com/article/article/72328-dangers-chemotherapy/#ixzz2Mrz4AOnC