December 2009 Rads Group

Mimi, I hear you on the insurance issue, we have just met out $2500. deductable for 2009...But in a few days we will have to meet $2800. (went up in 2010) all over again..Fisrt they treat you like an idiot when you ask questions and then they sock it to you with the co-pays...and life goes on...My son's car is having the whole motor changed in his car.....My car went in the shop today and when mine comes out my husband's goes in...We can't win!!!...But we have a cute and happy dog that has no car problems.......

Hi Ladies. I hope everyones having a good week in spite of all of this.

Hardly anyone posts here anymore huh? Come out everyone wherever you are :-)

hhfheidi, can I come on the trip with you? lol. It sounds wonderful, and you deserve it after this!

No insurance issues here yet (fingers crossed), but I feel bad for those who do. Its bad enough breast cancer then to have worry about money yet. Insurance companies make 400 plus % (true!).

Well just wanted to check in. Wed I see the lady doc I am not fond of, so she can explain why I now need 33 sessions and not 28. Should be fun...lol. (I can just picture my husband cringing when I argue with her..lol)..

Have a good night everyone. Im off to bed soon, been up since 6 to go for bloodwork then rads.

TTYL,

Jules

Mimi  Incredibly, my doctor ALSO said it was a pulled muscle from using the arm support device and I don't buy it at all!  I've pulled muscles before, but they heal in a few days.  Plus having my arm in the support device doesn't irritate this area at all, indicating to me that it's unrelated to the positioning.  I'm going to read more on the chostochondritis issue......5 down, 23 to go!

Hi everyone, Yeah somanywomen.maybe they went home for the holidays or south to get out of the cold....Yes, I agree with the above statements IE It gets me how these docs lie about side effects! (Grrr)..

Well ..I confronted my rads doc on the 28 (as originally said) to the "now" 33 rads sessions. She said its 33! (grrr.lies I wrote down 28 when I met her, and my husband heard her). I said well after the 18th my husband goes on days and you have no afternoon appointments here.. OH WELL she said find a ride. Also shes leaving and someone else is taking over Monday so then she says ask the NEW person if I need to come for 5 more sessions?? WTH, she just leaves me hanging..

Sooo...Im thinking of quitting the day before, leaving me with FOUR boosts, Whats one more day going to do? Also I talk to someone on here in messages, she has the exact same kind as me and she was done in 28.... I dont get why its different here.

Well Im off, sorry but Im just having a bad day and am sick of this whole thing today. In addition Im burnt and NOW she says oh use the cream (finally) and I am nauseated. And now I hear they want SNOW here tomorrow for the ride in

Sorry to be complaining, thanks for listening Im just fed up now.. Have a great day ladies....Jules...

Hey ladies! Sorry for the neglect. My computer crashed. Then it took me a while to read everything. But I'm all caught up now! Happy Holidays!

Mimi- sorry about the insurance problems. It's an added stress you shouldn't have to deal with.

My docs on vacation this week so I have a fill in. We'll see how it goes. I get weighed today. I've been gaining weight despite my healthy eating and working out almost everyday. We'll see what the scale says today. :-(

You're all so lucky you have husbands. It's nice you have someone to go through it with you. I am single and my family is far away. I have friends who help out and my family takes shifts visiting but not 1 consistent person who's on the journey with me. No one's visiting for rads since this is the easy part. Chemo and surgeries were where I needed help.

I am doing 25 rads but don't know anything about "grays". I'll ask the doc today. No boosts because I had reconstruction already and they said it'll mess up the implant.

You're so right about doctors not telling you anything. I switched oncologists because of that early on. Ugh. So frustrating. Why do they keep us in the dark?

I've done 16 (9 to go!) And am a little red and a little sore. Been using calendula and aquaphor religiously. My doc says aloe doesn't do anything. We'll see how my skin holds out.

I don't know about zometa but I had my port removed right away. It heals pretty quickly. I'm sure ypou can do it during rads but it's so annoying to go everyday you'll probably want to limit your apptsduring radiation. Good luck!

somanywomen -  LOL about selling the dogs to pay for the car!!! As for my red area up to the collar bone they are saying NOTHING!!!!!  They keep telling me the area they are worried about it directly under my breast and so far there is nothing there thank the LORD!!

Beggy- I think the doctors are just so STUPID!!! I am completely fed up with all fo the krap from every last one of them.  Oh how I want this over and wish that I didn't have to see another for a long time. But alas, I know that they will be a part of my life for a very long time to come and I do want to stay alive and well so I will continue to tolerated it.  But I am tired of all the lies.  A positioning device causing a pulled muscle.... PLEASE!!!!!! give me a freakin break!!!

Anyway I am 1/2 way through as of today with my regular radiation and then the last 10 txt are some kind of crazy boost.  5 my breast will be pulled up in some kind of plastic device away of the chest wall and 5 will be directly to the incision. Are any of you having anything like that done?

Renee

Mimi, my 5 last boosts are just in lumpectomy area...I've never heard of the vacuum device to pull breast upward, but it makes sense doesn't it.....I am being radiated by the IMRT Trilogy system, I think it is a newer supposively high tech zapper....I just hope my techs are using it correctly...

hhfheidi, I am only getting 2 grays a day for a total of 60....so I don't think your numbers sound right.......or  you will be one roasted chick...lol

Welcome back Lisette, I have 10 to go...we are on our way to being done..or is that we are on our way to being well-done.....

Hi All

Just checking in again. I hope you all had a good Christmas. We had a quiet day and were glad of the chance to get our breath back after all the hospital appointments just before. We went to stay with Nick's sister in Yorkshire on 27th December for a few days and had a great time catching up with her and her family. Then we drove back and managed to get home before it started snowing again.

Adrienne welcome to the thread. I hope your rads treatments go smoothly, with few side effects.

hhfheidi I only had 40 grays in total, split into 15 fractions. I was told that would be the same amount anywhere in the UK, but I have no idea about other countries.

I do feel for those of you with insurance issues. Luckily for me we do not have that particular problem here in the UK but I know we all have enough stress to deal with without that.

Renee I asked about my next mammo and was told it will be 1 year after surgery.

I have finished rads now but I didn't really burn, just went a bit red, including an area on my back where the radiation left my body. A colleague of  mine went through this about a year ago and she burnt under her breast after her treatments had finished. It was where her breast touched the skin on her ribs. I don't suppose I'll get that because I have a tissue expander in the rads side and it sticks straight out, unlike the other side

I wish you all a very Happy New Year and hope that 2010 bring much better things for us all.

FYI,..sorry, I know this is a huge post, but I found it to be soooooooo interesting about radiation therapy types (found at lef.org)...I would definately have chose the "Proton beam radiation therapy"....

Cancer Radiation Therapy Along with surgery and chemotherapy, radiation therapy (radiotherapy) is one of the most important methods of cancer treatment. At least 50 percent of all cancer patients will receive radiotherapy at some stage during the course of their illness. It is currently used to treat localized solid tumors, such as cancers of the skin, brain, breast, or cervix, and can also be used to treat leukemia and lymphoma (Tobias JS 1992). Most types of radiation do not attack cancer cells specifically, and therefore cause injury to normal tissues surrounding the tumor. The adverse effects are a major factor limiting the success of radiation treatment. However, proton therapy and CyberKnife® therapy are technologically advanced forms of radiotherapy that cause little damage to normal tissue because they focus intensely on the tumor. The effectiveness of radiation therapy can be enhanced by both radiosensitizers, such as genistein, curcumin, green tea, and hyperthermia, and radioprotectors, such as ginseng, glutathione, whey protein, and shark liver oil. Overall, the use of specific nutritional supplements, drugs, and other strategies may prevent and help to alleviate and treat the side effects caused by radiation, and thereby improve the effectiveness of radiotherapy. Principles of Radiation Therapy (Radiotherapy) Radiation therapy is the treatment of cancer with ionizing radiation. Radiation works by damaging the DNA (genetic material) within the tumor cells, making them unable to divide and grow. Radiation is often given with the intent of destroying the tumor and curing the disease (curative treatment). However, although radiation is directed at the tumor, it is inevitable that the normal, non-cancerous tissues surrounding the tumor will also be affected by the radiation and therefore damaged (Burnet NG et al. 1996). The goal of radiation therapy is to maximize the dose to tumor cells while minimizing exposure to normal, healthy cells (Emami B et al. 1991). Because no single therapy can provide complete treatment for a patient with a solid tumor, radiotherapy is often used in combination with surgery or chemotherapy to improve the chances of a successful treatment outcome. Sometimes radiation is used to relieve symptoms, such as pain or seizures; this is called palliative treatment (Hoskin PJ et al. 1992). What Is Ionizing Radiation? Radiation used for cancer treatment is called ionizing radiation because it forms ions as it passes through a tissue. Ions are atoms that have acquired an electric charge through the gain or loss of an electron (Dunne-Daly CF 1999). Ions can cause cell death or genetic change either directly or indirectly. The direct effect causes a change in the molecular structure of biologically important molecules, most likely DNA. The indirect action of radiation occurs when it interacts with water molecules in the cells, resulting in the production of highly reactive and unstable free radicals or reactive oxygen species, which immediately react with any biomolecules in the surrounding area, producing cellular damage (Fang YZ et al. 2002). This damage can lead to cell death by two mechanisms (Ross GM 1999). The first process, known as apoptosis, results in cell death within a few hours of radiation (Kerr JF et al. 1994). The second mechanism is radiation-induced failure of cell division and the inhibition of cellular proliferation, which in turn leads to cell death. Several enzymatic and nonenzymatic antioxidant defense mechanisms exist in cells and prevent excessive damage through the scavenging and inactivation of these reactive oxygen species (Mates JM et al. 2000). Types of Radiation Therapy External beam radiation therapy (EBRT). EBRT creates a radiation beam and aims it at the tumor. The radiation adequately covers the tumor but minimizes the dose to the non-tumor normal tissues. Radiation is given in fractions rather than as a single dose, and the use of this fractionated radiotherapy allows normal cells time to repair between each radiation session, protecting them from injury. Conventional fractionation in the United States is 1.8 to 2 Gray (Gy) per day, administered five days a week for five to seven weeks, depending on the particular clinical situation. (Gray is a unit of measure of absorbed radiation dose.) While this schedule is strictly for the convenience of physicians trying to maintain a normal workweek, the relatively long intervals between doses of radiation may allow cancer cells (as well as normal cells) to recover and regrow. A number of different radiotherapy schedules have been suggested to overcome this problem (Shah N et al. 2000). These include hyperfractionation, in which the time between fractions is reduced from 24 hours to 6 to 8 hours to enhance the toxic effects on tumor cells (Fu KK et al. 2000) while still preserving an adequate time interval for the recovery of normal cells. Continuous hyperfractionated accelerated radiation therapy (CHART) is an intense schedule of treatment, in which multiple daily fractions are administered within a short period of time. Clinical studies have shown benefits of altered fractionation over conventional treatment for several cancers, including head and neck cancer (Goodchild K et al. 1999) and non-operable lung cancer (Ghosh S et al. 2003). Proton beam radiation therapy. This is one of the most precise and sophisticated forms of external beam radiation therapy available. The advantage of proton radiation therapy over x-rays is its ability to deliver higher doses of shaped beams of radiation directly into the tumor while minimizing the dose to normal tissues. This leads to reduced side effects and improved survival rates (Suit HD 2003). As of 2002, more than 32,000 patients around the world had received part or all of their radiation treatment by proton beams. There are approximately 19 proton treatment centers worldwide. Two major hospital-based facilities in the United States that regularly treat patients with proton beams (often fractionated) are Loma Linda University Medical Center in southern California (LLUMC Proton Treatment Center) and the Northeast Proton Treatment Center at Massachusetts General Hospital in Boston. The Midwest Proton Radiotherapy Institute in Bloomington, Indiana (http://www.mpri.org/) treats children and adults with certain brain tumors, as well as those with tumors that are close to vital organs and therefore cannot be treated successfully using traditional methods. The efficacy of proton beam radiation therapy has been clinically proven (Shipley WU et al. 1995) in prostate (Slater JD et al. 1999; Zietman AL et al. 2005), lung (Bush DA et al. 1999), hepatocellular (Matsuzaki Y et al. 1995), and uveal melanoma (Courdi A et al. 1999; Munzenrider JE 1999; Spatola C et al. 2003), sarcomas of the skull base and cervical spine (Munzenrider JE et al. 1999), optic pathway gliomas (Fuss M et al. 1999), astrocytomas (Habrand JL et al. 1999), benign meningioma (Gudjonsson O et al. 1999), non-resectable rectal, esophageal (Koyama S et al. 2003), and liver cancers (Ask A et al. 2005b), head and neck cancers, including thyroid cancer (Ask A et al. 2005a; Sugahara S et al. 2005), and more. Intensity modulated radiation therapy (IMRT). IMRT creates a shaped radiation beam, delivering high doses of radiation to the tumor and significantly smaller doses of radiation to the surrounding normal tissues (Hurkmans CW et al. 2002; Nutting C et al. 2000). This may result in a higher cancer-control rate and a lower rate of side effects (Garden AS et al. 2004; Welsh JS et al. 2005). IMRT has been used successfully in the treatment of several types of cancer, including prostate (De Meerleer G et al. 2004), cervical (Ahmed RS et al. 2004), nasopharyngeal (Kwong DL et al. 2004), and pediatric cancers (Penagaricano JA et al. 2004). Brachytherapy. Brachytherapy can be used for many types of cancers, but it is most commonly used to treat prostate cancer (Woolsey J et al. 2003) and gynecologic cancers, such as cervical or uterine cancer (Nakano T et al. 2005). Brachytherapy usually involves the insertion of devices around or within the tumor to hold radioactive sources or seeds. Radioactive isotopes, such as cesium, are then inserted into the delivery device, either temporarily or permanently, allowing for the slow delivery of a high dose of radiation to the interior of the tumor (Fieler VK 1997). Radioimmunotherapy (RIT). Radioimmunotherapy, one of the newest developments in the treatment of non-Hodgkin's lymphoma (Harris M 2004), has achieved a high tumor response rate (up to 80 percent) in several clinical trials (Witzig TE et al. 2002). Radioimmunotherapy uses drugs called monoclonal antibodies, which have a radioactive isotope attached to them. This is targeted to the surface of a cancer cell, destroying it. Radioimmunotherapy can be used (in a targeted fashion) to treat single cells that have spread around the body (Riley MB et al. 2004). Because the radiation does not concentrate in any one area of the body, radioimmunotherapy does not cause side effects commonly seen with external beam radiation therapy. The most significant side effect associated with radioimmunotherapy may be a temporary drop in white blood cell or platelet count (Witzig TE et al. 2003). Stereotactic body radiation therapy (SBRT). SBRT is a standard form of treatment for primary and metastatic brain cancer (Phillips MH et al. 1994). It is delivered using a machine called a gamma knife, which uses converging beams of gamma radiation that meet at a central point within the tumor, where they add up to a very high, precisely focused dose of radiation in a single fraction. Due to this precision, the cancer can be located in an area of the brain or spinal cord that might normally be considered inoperable (Song DY et al. 2004). CyberKnife®. CyberKnife® is a non-invasive, precise radiation technique that can deliver concentrated and accurate beams of radiation to any site in the body. This system combines robotics and advanced image guidance cameras to locate the tumor’s position in the body and deliver highly focused beams of radiation that converge at the tumor, avoiding normal tissue. It is a successful method used to treat spinal tumors (Gerszten PC et al. 2004b) or tumors at other critical locations that are not amenable to open surgery or radiation, as well as to treat medically inoperable patients (Gerszten PC et al. 2004a). It can also be used to treat benign tumors and lesions in a previously irradiated site, or to boost standard radiotherapy (Bhatnagar AK et al. 2005; Degen JW et al. 2005). Three-dimensional conformal radiation therapy (3D-CRT). 3D-CRT is a technique that uses imaging computers to precisely map the location of a tumor (Symonds RP 2001). The patient is fitted with a plastic mold or cast to keep the body part still so that the radiation can be aimed more accurately from several directions. By aiming the radiation more precisely at the tumor, it is possible to reduce radiation damage to normal tissues surrounding the tumor by up to 50 percent (Perez CA et al. 2002). Radiation Therapy versus Medical X-rays (Diagnostic Imaging) Although diagnostic x-rays provide great benefits, including the earlier detection of cancers and the possibility of early treatment, their use is associated with small increases in cancer risk (Ron E 2003). One study estimated that cancer risk due to diagnostic x-rays varied from 0.6 percent to 3 percent in the 15 developed countries studied (Berrington de Gonzalez A et al. 2004). Therefore, it is prudent to avoid unnecessary x-ray procedures. Up to 30 percent of chest x-rays may not be necessary (McCreath GT et al. 1999). Unnecessary computed tomography (CT) examinations may result in increased radiation exposure (Fleszler F et al. 2003; Frush DP 2004). The cumulative risk of cancer mortality from CT examinations in the United States is about 800 radiation-induced cancer deaths per 1 million examinations in children under the age of 15 (Brenner D et al. 2001). Mammography (chest x-ray) uses low-dose x-rays to create a detailed image of the breasts. Although there is some controversy regarding mammography’s effectiveness in reducing breast cancer mortality, successful treatment is linked to early diagnosis, as mammography can often show changes in the breast before they can be detected by manual examination (Olsen O et al. 2001). The effective radiation dose from a mammogram is about the same as the average person receives from background radiation over a three-month period (Sabel M et al. 2001). At present, the consensus view is that the benefits of screening women over 50 years of age with yearly or twice-yearly mammograms substantially outweighs the associated risks due to radiation exposure (Beckett JR et al. 2003). However, there appears to be no significant benefit for women under the age of 40, and there may be harm for women under 30 due to the danger of cancer developing after exposure to radiation (Brenner DJ et al. 2002). Therefore, the main area of controversy concerns women between the ages of 40 and 49.

Again, I apologize for those who find this way too long...but hope it will be as imformative for you as I have found this article to me.....

Mimi--I don't think its a matter of  the doctors being stupid, it's more like they think that WE are  stupid when it comes to these issues.  It's almost like docs have a standard list of explanations for common complaints/concerns that they use rather than taking the complaint seriously and making an effort to look deeper into the problem.  Anyways, I know I'll have boosts at the end, but I didn't get into any details yet about the actual techniques they'll use.  The breast stretching part you described sounds like some medieval torture device!

Hello all.

Jules, it must be very frustrating to have planned your schedule and steeled yourself emotionally for 28 treatments, only to be told you'll have 33. I was told 33 up front, but I was also told that sessions might be added or subtracted later. Subtraction, I'm in favor of

Sorry to hear about the burning and nausea, too. Maybe the long weekend will let you heal up a bit. 

I don't have an answer about insurance and switching hospitals. I think it might be hard to get it scheduled without gaps in your treatment, but if you are totally unhappy with your current situation, you could check into it. 

SoManyWomen, thank you for the welcome. It helps so much to hear what people are going through and what solutions they have found.

Too bad about your car, and I hope you don't have to sell your dog to pay for it

Thanks for the information about radiation treatment methods. That is really interesting. It's the first time I've seen an admission that the 5-days-a-week treatment schedule is done so the doctors and staff can have a normal work week. I had already guessed that, but it was nice to see it in writing  

Lissette, it seems that you've been through quite a lot this year. I'm glad you can see the light at the end of the tunnel now. I'm glad you got your computer running again (I hate it when my computer plays tricks on me). I'm hoping your skin will hold out for the last 9 treatments. 

 Renee, I don't know what might be causing the redness up to your collar bone, but perhaps this is normal: yesterday after treatment I asked if I could see the photo they took of me at my first treatment, where they drew the treatment area on me with black pen, because I wanted to be sure that I was putting the creams and oils on the entire treatment area. The nurse told me that I should be putting the creams on a larger area than the treatment area, including all the way up to my collar bone and about four inches below my breast. From that, I gather that I might burn in those areas, so maybe that's normal?

That vacuum device sounds strange, but I've had a lot of strange things done to me in the last few months, and for all I know, they'll do this one to me, too. Hopefully it will protect some of your tissues from the radiation. 

hhfheidi, I laughed when you wrote "slow cooked is always moister and more succulent." Thanks for that. I'm being slow-cooked, too. 

Jane, thank you for your warm welcome. Many congratulations on completing your rads treatments. How wonderful that you didn't burn: that gives me hope. You are so generous to remain active on this thread to help the rest of us get through this -- thank you. I hope you are really enjoying your post-treatment life now.  

SunnyForNow, I loved reading that you are a fair-skinned redhead like me, and that you didn't burn. I have my fingers crossed.

Update on me: I had my 5th treatment of 33 yesterday. I'm having only minor side-effects so far. My breast showed swelling after the 3rd treatment, but it hasn't gotten any worse. More worrying to me is that even though I'm not seeing any redness yet, I started feeling a sort-of burning sensation under my armpit after only 2 treatments. It gets a little worse every time, and there's nipple sensitivity, too. Because of this, I found it pretty hard to sleep Tuesday night, although I did a little better last night. The nurse said that it is very early to be having that kind of reaction -- lucky me. I hope I don't end up being used as a bad example I'm used to it, though: when I was in the hospital after my emergency appendectomy, the doctor brought in a bunch of interns to see me, since my case was "unusual." It turns out that most adults are smart enough to go to the hospital *before* their appendix bursts. Not me

Anyway, did any of you have irritation in the armpit area and nipple early in the treatments?

Thanks for your help,

adrienne 

5 down, 28 to go 

Hey Ladies- 18 down 7 to go! Yay! I had a 645 appt today. Ugh! But I made it. I'm glad to have 3 days off to allow my skin to recover.

Renee? Mimi?- I'm all red in the radiated area, up to the collarbone. It's not terribly noticeable but I see it. Just like a slight suntan.

I had my port removed Nov 5 when I had exchange surgery. You can still see the scar. I could lift things about 2 or 3 days later on that side. It's the lump side that's uncomfortable. :-(

So glad everyone is having a great day! 

Lissette - it's Renee, my forum name is just mimi (that's what my grandchildren call me... yea, I have 5 of them and I'm only 45!!) :=)  I didn't start young, my husband is a little older than I am and his daughter has 2 children, my son who is 23 has 2 and my daughter (who had an oops and has just turned 20 has 1).  FYI:  I will be 46 soon :=(  , I guess your only as old as you feel!  LOL!!

Woo HOO ... 15 down and 23 to go yip pee!!!! Still with a little redness but the emu oil is really helping.  I don't think the rad tech probably likes it... I put it on every night and it causes the big purple paint pen mark she puts on my breast (they use it to line me up) to fade off onto my t-shirt I sleep in every night.  She can mark it up fresh today, I will use the oil tonight and in the morning it will have faded some after about 3 days you can barely see it.  She is having to mark it almost every day.  LOL!!  I guess she thinks I am washing it off and that is part of it to, but mostly the emu oil they don't know I'm using.  It's suppose to be great for burning.   

Happy New Years Ladies!

Hey Renee- that's awesome you have such a big family so young! You get to actually enjoy them. Maybe I'll meet an older man with kids. Keep your fingers crossed!

Somanywomen- I deliberately took the ink off a few times because I wanted to wear low cut tops and the techs got upset. I just said it washed off. Whatever- it's part of their job. Let us know how the emu oil and the calendula work. I'll try anything that helps! I'm sorry about the pain. I don't really feel much after the mastectomy so who knows?



Happy new year lovely ladies! 2010 is gonna be a good one now that 2009 is behind us. :-)