Radiation recovery
Comments
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my heart is full of sadness but as I type this my father in law Joe lost his battle of cancer this afternoon and hagained his wings. We were all by his side as he passed and it was sad but beautiful.0 -
Josie, may Joe Rest In Peace. He has fought against his failing health valiantly for many years and I think he and his body decided it was time. I’m glad you were all with him this afternoon. You will miss him greatly.
((Josie)
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So sorry Josie but I’m glad all of you were with him too. He fought a good fight. Now he is pain free. Prayers for you and your family.
Diane
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Pics of the twins from Halloween. Costumes GFF bought look a little big but they don’t really understand Halloween yet so doesn’t matter. Wish DH and I could have seen them big things are apparently tense between DS and her. Idk what’s going on but they have another court date and she is very short with me. Sigh.
We did have a lot of kids last night. Good thing I overbought candy as usual!
Diane
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Waving HI to our newbies.
So sorry for your loss Josie.
Joan & Sew good to see your posts.
Diane twins are cutie pies.
Thanks for the hugs regarding my recent group loss.
Grab a coffee or glass of wine, this could be a long post. Lots going on. one of our twins got laid off, then the motor crapped out in her truck. So it is here & we are trying to fix it for her. Last week as I was walking her dog he went up on the deck which was covered with heavy frost. I slipped & fell. Tore the muscles in my lower back right where I already have arthritis. Still in a lot of pain. No lifting for me for about the next 4-6 weeks. Bending is painful.
Hubby is about to have a meltdown. Just can't handle working anymore. We have to sell everything in order for him to retire ,our charger & acreage included. This decision is also causing him more stress as he loves both of them to death. Then yesterday he found out he has a hernia & will be having surgery. which means he will be off work for a few weeks. Which now means we will have to cancel our trip to Mexico. Niether of us can lift anything right now so we are quite the pair. This also means daughters truck is not getting fixed like we thought.
I got paperwork for application for disability. Got Dr to do his portion. Haven't filled out my 22 pages yet as I can't write & hubby has been preoccupied. Dr is sending me to see neurologist to try to figure out my hand tremors & speech problems. It takes 4 months for gov't to process application & they usually deny first time around. Then you have to appeal. So maybe in 8 months I may have an income. If either one of us apply for early retirement we lose 30 % for applying early. Even if we wait til we are 65 it would only be 2500 mo that we get. To say we are under stress is an understatement. We really needed that vacation.
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So sorry for your loss, Josie. He was blessed to have so much family right in the area, and, of course, he was a blessing to you all. His passing creates a great empty space.
What a vicious circle you are in. Charger. You have too much stress so you have to make changes, but the changes just add more stress. And just thinking about the changes adds even more stress. Ugh! Once you've got a few of those ducks in a nice, neat row, hopefully things will calm down. Peace.
Nancy, I'm glad you've decided to go ahead with rads. I was terrified of the big bad machine, but actually had no problems once my initial panic wore off (after a lengthy sit-down with the head tech). I'd spent so much time reading about side effects that the benefits of the treatment sort of slipped away from my awareness. Really, most of us had annoying side effects, but they go away quickly and we're just glad that we've clobbered any angry cells that might be hanging out.
I also found it really helpful to have a weekly visit and exam with my RO, and to learn that I could always go back to see her if I have questions (not likely to happen now, after almost five years, but I did see her survivorship nurse a few times after treatment ended).
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edwards750, it is mostly friends and family that don't agree with my choice. They think I should do the chemo because I should listen to the doctors and the doctors know best. But I do have lots of support for my decision. We did see the radiation oncologist yesterday and he said that it would be better with chemo but that is not his area. Starting November 20, I will have 16 treatments over 3 1/2 weeks. It is much better than I had hoped for. He did say that overall imorovement for all cancers is 3 percent for five years and 4 percent for ten. I don't think thise percentages are worth it. I just could not bring myself to do the chemo because I have diabetes, tendency to anemia and Osteoarthritis. Chemo would just compromise my immune system, and I feel better not taking the risk. Whatever the consequences in the long term, I am comfortable with my choice. When we got home yesterday there was a Message from the oncologist I saw on Monday and she said that my tumour markers were good so I am in as good a shape as I can be to face treatment. Thank you for your helpful thoughts
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Josie123, I am so sorry to hear of your loss. It is often as hard on those who watch
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BrooksideVT, I am starting rads on November 20, 16 treatments over 3 1/2 weeks. My oncologist understood my reasons for not having chemo, given I have diabetes, tendency to annemia and osteoarthritis. If the cancer recurs, I can consider chemo then. With all test negative for cancer and tumour markers being good, I would be foolish not to treat the area where the cancer originated. I am in as good a shape as I can be when I start. Thank you so much for your encouragement.
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Nancy glad you have such support. Where bouts in Manitoba are you? I lived in Morden for a year. Have relatives there.
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70chatger, we are in Boissevain. Wow. Nice to 'meet' you. I am originally an Ontario girl from Niagara, but Manitoba has been my home for 24 years. I lived in Alberta twice, 1980-81 and 1989-94. I moved to Wpg in 94, met my husband and got married in 1995.We lived in the Roblin/Russell area for 18 years, but my husband was raised in Boissevain, and we love it here. So sorry for your difficulties and hope you heal quickly and all the best to your husband. Am sorry also for other hard circumstances, too. I hope there are better days and experiences over the horizon.
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Good grief Fran you must feel like Ms. Job right now. So sorry for you and your husband. You do need that Mexico trip. It’s hard for me to fathom snow or frost because it’s 80 flipping degrees here. Thanks for the compliments on the twins. They are precious!
Nancy - good for you. It bothers me when doctors not only dispense advice they dare you not to take it. If I’ve learned anything from our mutual DX it’s be your own advocate. I did my homework too before I did Rads. I really think some doctors were totally unprepared for the patients who questioned their treatment plan. I have a friend who not only challenged her doctor’s advice she decided to do the polar opposite. She took her case to the heads of the cancer clinic here. She was adamant. It also helped that she was a RN at St. Jude Hospital so if anyone knew about cancer and it’s effects she did. She won and is 9 years out. Good luck!
Diane
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edwards750. Thank you for your encouragement. I will get through the rads. Since I have ben told I cannot use antioxidants from supplements or essential oils I need to come up with ways to support my immune system
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Nancy, you really want to stop taking any vitamins a little bit before you start radiation, and probably resist the temptation to switch to a diet of kale and lemons. The theory is that these antioxidants strengthen any cancer cells that might be weakened by rads, preventing the next day's dose from destroying them.. For now, the best support for your immune system is probably walking or other exercise, and maybe meditation. It's only for a month or so (I waited probably another month after finishing rads, but I was super conservative--I doubt anyone else did the same.).
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BrooksideVT, I can do that. What I am concerned with now is, if they are doing whole breast radiation, how is it even performed. I was so tired and overwhelmed that now I am concerned about how they will protect my lung. I woke in the middle of the night and suddenly realized the radiation oncologist had said "very little risk of radiation to the lung." I can find nothing in the booklet they gave me or on line to tell me how the radiation will be performed. I know I will be laying on my back
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Right now, super scientists with very advanced degrees are busy working out exactly which vectors will hit where. In each treatment, the rads machine will probably zap one area, then move slightly to approach your tumor area from a different angle, then possibly move again. Your radiologist can show you the diagram of exactly how much radiation will go where. In my case, a small slice of my lung was in one field, but that was the least of my worries. I wanted any leftover cells to be zapped and zapped good!
Yes, radiation to any healthy tissue is a concern, but I've been on this board for while and don't know of anyone complaining of lung aftereffects. I'd add that none of my doctors were concerned. I think to the medical community, it's of no consequence except that they are required to let us know.
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BrooksideVT, I agree that the doctors tell you what they have to but seem sometimes to minimize the risk. I have been hearing and reading about radiatiin pneumonitis. And what is a radiation boost? Nothing was said about that. There is nothing in the CancerCareMB websites to say whether they irradiate from the top of the breasts, etc. I wonder if holding my breath would help. :
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Hi Nancy,
Thought I'd help Brookside out here a bit. All your questions are good, but you're starting to freak out a bit it appears to me, and are worrying needlessly. As Brookside said, scientists are determining your exact dose of rads needed, the location of them, and how the tumor will be attacked. I definitely do not recommend holding your breath unless the techs tell you to do so. It is true that when radiating the left breast, they will sometimes need to use a Bolo (cushion/breathing thing I believe) which senses your breathing and does the rads only when your body is in the exact correct position. They do all this because they need to avoid radiating your heart muscle. They found out that the radiation done in the 1950's without concern for the heart muscle eventually was causing heart attacks in some women. So, they've fixed that problem, hence the Bolo, the radiation technologists and etc. So.....if they've done your "mapping" which uses CT scans to make certain they know exactly where to place the beam, how deep the beam needs to go into your body to hit the tumor bed, and how much dosage you need, then if you start holding your breath it will change your position on the radiation bed and will in fact mess up where the beams hit. So......don't do that. The techs will place you on the table, and position you "exactly so" using the tattoos or marker marks you will get, the cross hatch hairs from the machine and etc. And believe me they will place you exactly correctly with no deviation from session to session. that placement is what will make certain that the beam is not going any deeper than it has to and that it has hit the exact correct spot.
Boost (usually 5) are done at the end of all your other rads and I think they might be a little more broad brush than minutely targeted. I also personally think they aren't as hard on your body as my skin started healing and I started feeling less fatigue before I finished the boosts.
I think for you, you should definitely try to do the things you can to help your body work thru this, by eating right (fruits, veggies, nuts and PLENTY of protein daily 60 to 90 mg daily and staying away from all sugar, especially foods with sugar added if you're er/pr+), getting exercise....not warrior women workouts but walking etc.......get sleep as you can, use the creams on your breast, use a very gently body soap (dove is recommended out here) as you don't want anything drying out your skin and talk with your nurse and Radiation Dr as needed. In other words pamper your body and mind. You take care of the whole body and the tecs will take care of the rads part. Perhaps re-look at your decision to do the rads, trust that decision, and go for it. Sorry if this is a tough answer but I felt (perhaps wrongly) that maybe it would help you be less anxious over this. Due diligence is good, knowledge is good, worry and stress are not. Oh, and if you search hard enough you will find lots and lots of things that might/might not be caused by rads, like the pneumonitis and etc. I think all the possible side effects may/may not happen, but none of them are life threatening like the cancer is. So, if you get really run down with the rads, for example from possible fatigue and you didn't take care of getting rid of stress and didn't get any rest, you might get these side effects. Heck, I turned out allergic to the rads and got radiation induced skin issues within the first 3 days of rads. Did it mean I had to take extra care? yes. did it mean I was sorry to be doing this? yes, as who would ever choose to go thru rads. Did it mean I regretted my decision? Absolutely not. I'd do it again.....
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Nancy, I just remembered there were 2 books lots of us found helpful during our treatment. The best one, I thnk, is Anti Cancer, A New Way of Life by David Servan-Shcreiber, MD. It's quite good and helpful. The second is After Breast Cancer, a common-sense guide to life after treatment by Hester Hill Schnipper. You probably could find these at your local cancer support center to look them over, or Amazon sells them. Perhaps they would help you identify the best ways to take care of your body to not only get thru active treatment, but as a way forward.
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Thank you, MostlySew, for the clarification. My concern is that I was originally told that only the tumor would be targeted (it was quite small, 1.2 cm, and there was a larger DCIS). The surgeon said he got it all out with clear margins. (Surgery was July 14th). When I saw him on Wednesday (the morning of the meeting with the oncologist), he had no comment about me not doing chemo, but said "radiation is a must because you had one very narrow margin (0.1 mm), and if any cells escaped it would be there". Then we saw the radiation oncologist two hours later, and he said it would have to be a full breast radiation because it was a lumpectomy and not a biopsy. Yes, I am anxious, because I would rather not do rads, but given family and friends disagreeing with the no chemo, and this comment about the very narrow margin, I think it would be harder to deal with them if I don't do rads. I do feel, though, that I am in as good a shape as I can be. I have switched to Alkaline Diet (sugars have really come down), using Essential Oils, boosting supplements, yoga for joint and breathing exercises, and walking. Besides the diabetes, I also have a tendency to anemia, and osteoarthritis. I refused the chemo because I had a low stage and I was told by the CancerCare Oncologist that I am NED. She accepted my decision because I left the door open to chemo if cancer recurs. Interestingly enough, she said that surgeons will ALWAYS tell you the margins were clear. The surgical oncologist stressed that because I am Triple Negative, the rads is really necessary. I am thankful that the rads will be a fairly short course, though I know that could change. We are into winter now and driving back forth every day to get treatment an hour away is a little daunting. I am 64 and my husband is 73 and we have no children, and he is in agreement with my decisions.
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Nancy, I think you are making informed decisions and you must remember that every cancer is different. Every person is different and the best we can do is work with our medical team and take the best care we can of our bodies. That said, if your surgeon said you had one really narrow clear margin, I'd believe him. And yes, rads are certainly always recommended in that case. In fact, with anything other than straight DCIS and sometimes even with DCIS, rads are always called for with just a lumpectomy. Being triple negative puts you at a different risk than the majority of people in that you will not have much advantage, if any, of taking some sort of Tamoxifen or AI inhibitor after rads. Most of us are ER/PR positive and since that cancer feeds on estrogen, then the estrogen reducing/eliminating drugs help. I'm not sure what the Radiation Oncologist meant by saying you needed full breast radiation because it was a lumpectomy and not a biopsy. that statement makes little to no sense to me. I do believe however, he was saying you need radiation because you had a lumpectomy instead of a mastectomy. As far as "full breast" I was told that term initially during meetings with my care team, but it was, in my case, a terminology issue. The RO refers to "full breast" as opposed to implanted seeds or some other type of unusual rads they use on breasts. I believe, if you were to call that office and ask, you will find that it is definitely targeted rads, not just full on or whole breast wide beam rads. Or perhaps he meant to indicate that rads kills errant cancer cells in the whole breast, which it does even in targeted rads, to my understanding. Also, as far as your short course of rads, I think you'll get the same amount of total rads as the longer term, it's just they give you a bigger dose each time. So with traveling an hour each way, it would be much better for you to do the "short course". It will help lots.
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Thanks, MostlySew, for your support. I have been working to be informed since the day I got my mammo results (which was actually done six months early because we moved to a new community). I will clarify what was actually meant by full breast, but it would make sense to clean up any stray cells because of the TN status. It just makes the possibility of damage to the lung more possible. The radiation oncologist did say that there could still be cancer cells in the body, but they will not show up on scans until they are at least a half cm in size. That's pretty tiny; if there are any, I hope it's not a million of them. !
I think once I get past the first treatment and with the info I am finding about skin care, I hope that I will get through it with few side effects. 0 -
Nancy
you will get thru just fine....even if you have a few SE's....that's why they call us Warrior Women!0 -
I think it is just the anxiety, MostlySew. I am at peace with my choices, though a lot of family and friends are not. But I have support too, and I can't start second guessing; when I do, it takes my peace away and that is an indication to me that the choices are right. Have a stellar weekend.
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Thanks, Sew, for your help.
Nancy, yes, the more you read, the more icky, even terrifying, side effects you'll find to worry about. I know I did exactly that. Really, truly, only a very tiny minority have significant issues. Most of us just whine and moan and lean on one another on threads such as this, but do perfectly well. Your RO will tell you if you are at particular risk for any side effect, your other doctors will chime in if appropriate.
As to how "it" happens: As Sew indicated, you lie on your back with your hands over your head. The techs (usually two) move your torso around a bit until you are perfectly positioned. Once you are settled, the techs leave the room, but can hear you. You stay perfectly still while the machine rotates around you, I don't remember now, but I assume each treatment included zaps from the left and from the right. The goal is to "get" each and every nasty cell that might be hiding out. You will meet with your RO weekly, and a nurse will always be available to answer any questions. An RO will be on call 24/7, so you'll never be without contact opportunity.
Sew, I also loved the boosts. Nancy, these are beams that target the tumor bed rather than the whole breast. Mine also came at the end of treatment, when my skin was beginning to be irritated. Once the boosts started, the irritation ended.
I might have mentioned this, but I was absolutely terrified until the head tech hauled me off to his office and spent an hour explaining how the machine worked. Jeez! You'd think I was the first coward ever treated! All that anxiety for nothing! And Nancy, don't hesitate to call your RO with questions;
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Thanks, BrooksideVT. That also is a real help. You have a great weekend, and we are off to visit friends for the rest of the weekend, so I probably won't be on line much.
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we buried my father in law today. It was a beautiful ceremony and he was so loved by the first responders we had two fire departments and the police escort us to the cemetery. He was a veteran so he had military honors and my mother in law was presented with the flag. Very touching and amazing for such an amazing man0 -
Josie123, thinking o you in your loss
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sounds beautiful Josie.
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