Starting Radiation April 2017
Comments
-
I'm doing 16 treatments. This was recommended by two ROs in two different states. I'm good with the decision and trust their expertise. Each case is different depending on clinical factors etc. I have IDC and can only speak to my situation.
0 -
hey there LAW193.....the dry run is done without actual radiation to make sure that where they have mapped (targeted) the radiation to reach, is actually correct and doesn't need to be adjusted. I'm scheduled for 18 treatments (15 whole breast; 3 boosts just to lumpectomy area) and my RO told me that the longer period (6 weeks) is usually for ladies who've had chemo because their bodies are already weakened and still recovering from that....so they have a lower daily dose for a longer period of time. I don't think anyone would say you are stupid for any of the decisions that you make. The RO's are the experts, they are the ones to whom we are entrusting our care, so I would follow the suggestions that mine made as well. (whilst also researching and checking in with the ladies on here, lol
0 -
Law193, I had asked my RO about doing the shorter treatment when I started. He told me that having 2 positive nodes takes me out of that plan. Your's, Butterfly's and my diagnosis are very different and as Butterfly mentioned I can only speak for my specific diagnosis.
0 -
I am having 36 treatments. 28 are whole breast and nodes, 8 tumor bed boosts. I also asked about the shorter treatment cycle. I did not have chemo. I was told that it is not a good idea because the skin does not hold up as well with the stronger doses. No idea if this is accurate or not.
0 -
Connie, I'm doing 15 treatments, nicknamed the "Canadian Protocol." The RO initially said 16 plus 4 boosts, but saw my face fall and offered to do the shorter plan.
Lyn
0 -
VLH - You will be done long before me..... I'm doing 25 + 4 boosts!
0 -
I started today. 1 of 33. Lower dose spread out over a longer period - breath hold technique to avoid my lungs. Arm survived without going totally numb like the last time. Got pins and needles in my hand but could drive afterwards no problem thankfully. Had a lot of physio since the mapping session to stretch out the muscles and the nerves under my arm.
Anyone advised to use anything in particular to wash?
0 -
Elizabeth - my RO said unscented Dove bar soap was fine. My dermatologist likes this too. Used it for years as my skin is very sensitive.
Golf/VLH - my skin is doing great with the shorter Canadian protocol. 5 more to go so I hope it continues. 16 in all no boosts. I really think treatments depend on our specific Dx for which protocols are chosen. Actually I remember my first ROsaid they were all pretty much "standard" as far as available options.
Gentle hugs to all.
0 -
I was told by several medical people and other patients that Dove for Sensitive Skin is the best soap while doing radiation. That is what I am using.
0 -
I have a question. I'm noticing a vein showing up in my treated breast that wasn't visible before, it's not bulging or anything. Anyone have this too? It's away from my surgery incision more on top of breast. Just wondering if related to rads,
0 -
I've noticed that those of us offered the shorter treatment have negative nodes. Makes sense as the cancer hadn't spread. The heat is really kicking my butt and it's not that hot yet. I'll have to go to bed earlier so I can get up before the heat hits. I feel like such a wuss. I know it'll take some time for it to pass.
Butterfly, I had a vein become more pronounced towards my underarm during radiation but I didn't ask about it. I hope it's nothing serious for you.
Elizabeth, I was also told to use dove sensitive, unscented shower gel and I love it so much I'll keep using it, my skin is so much softer. I've had total numbness in the back of my arm from having 13 nodes removed and was told not to expect it to get any better. We'll see.
Gentle healing hugs to All 🤗
0 -
Yes, I think negative nodes are a major factor in choosing a shorter protocol, Lori. I'm sorry that the heat is adversely affecting you. I had a follow-up appointment with my breast surgeon and the a/c never seems to work in her section of the building.
Hope you feel perkier soon!Lyn
0 -
The size of the tumor is the deciding factor according to my RO. 2cm is the max size that she'll do the shorter protocol. I'm sure the negative nodes are probably just as important but I had negative nodes but a larger tumor so I couldn't have it
0 -
Thank you all so much for answering my questions. I had negative nodes and a 1.2 cm tumor so maybe that is why I can do the shorter period. I also know the RO couldn't tell me for sure if I was a candidate for the shorter period until they did the scan/mapping so there must be other factors as well that go into it. I'm feeling better about my decision. I'm still nervous about starting but mostly just fear of the unknown and worries about balancing the possible side effects and time that radiation will take up with all I have to do at work - I'm already fatigued from lack of sleep and I haven't even started radiation yet!0
-
4/20 completed, and also surprised fatigue hit hard already. Today I am having pain at site of sentinel bx. And the area between breast and armpit has a tan. Funny, because I'm fair skinned and usually burn in the sun. This is the first time I've tanned before burning first!
LAW193, I see you are HER2+, did you do chemo yet? I feel that between chemo and rads, a shorter course is ok, at least that is how I felt when they changed me from 6 weeks to 4.
Healing thoughts and tough skin to all
0 -
I am not doing Chemo. As it turns out, the invasive part was entirely removed during my biopsy - they could only find DCIS in the surgery specimen. The MO said they don't do chemo unless you have at least 5 mm invasive and I had only 1 mm.
0 -
Hello to everyone. My husband came up with an idea which I wanted to share. I have noticed that the seat belt was beginning to give me some issues and so I have been putting a small plastic spring clamp on the shoulder/lap part just below my chest area. That does not allow the shoulder strap to re-tighten after you position it comfortably. Works like a charm! You can pick these up at Lowe's or Walmart. I can add a picture if you want to see what they look like.
0 -
Connie, it's amazing how different our ROs work. The size of the tumor doesn't fit me as my tumor was only 1cm. Out of couriosity I called my RO's office and was told "in my case" it was due to my having 2 positive nodes. He also said the "standard" is different from state to state and country to country. Makes sense I guess.
Letsgogolf, what an ingenious idea. That will come in handy for my exchange surgery too.
Law193, that's wonderful news! I had 2 nodes that showed invasive so I agreed to be poisoned for 6 months. If I had to chose between doing chemo or radiation again? I'd go chemo all the way. It was a lot longer but I didn't have as much problems with being exhausted.
Lightenup, I liked the tan I got but it's gone already. Boo. I'm not looking forward to having to swim in a long sleeve shirt. Thank goodness we have our own pool. Has anyone else been told to keep covered at all times out in the sun? I found some awesome long sleeve, very light weight shirts on Amazon for doing my yard and garden work but I still overheat. I'm going to look silly with a dark face, hands and legs but white as a ghost torso. I tan very easily. My sister hated me! She'd spend hours laying in the sun and never tanned. I'd walk out the door to get the mail and come back with a tan.
It's my nap time. Gentle healing hugs to All 🤗
0 -
WenchLori, I assume both are deciding factors and my RO worded it that way because the tumor size was the deciding factor for me. It only makes sense to me that both the nodes and the tumor size are considerations. I sure was hoping for that shorter protocol but can't say that I expected it.
0 -
The criteria used in deciding whether to use the shorter protocol is (are?) also evolving. I think I recall reading that early on, it was only for women over 50 years of age, smaller tumors, negative nodes and who hadn't had chemo. My RO participated in a study using a shorter protocol (I assume the 16+4 boosts that she initially suggested for me.) She speculated that when the results are published, insurance companies will stop routinely paying for the longer treatment plan in low-risk patients. I'm sure the majority of doctors sincerely believe the longer protocol is the safest path for their patients, but you can't ignore the reality that ROs earn thousands more during those extra weeks.
As seems to be the norm for me, there's a another twist in the road. I had a routine follow-up with my breast surgeon and mentioned some of my concerns about radiation given my breast size and she asked whether I'd considered a reduction before radiation. Knowing there is an element of risk with yet another delay, I cancelled rads until I can see a plastic surgeon. Her nurse said the PS would have to see how I healed after my lumpectomies to know whether she would be willing to do the procedure, but it would be nice to not have my bosom at my waistline without enduring tissue expanders for months. Granted, I wouldn't get the perkiness I would have gotten with implants. Reduction is something I considered long before my cancer diagnosis. I've had so many delays from factors completely out of my control that I figure what's one more where I might actually benefit in terms of back and shoulder pain.
Lyn, Humming The Beatles' "Long & Winding Road"
0 -
Day 2 yesterday. Arm went numb and lost power again. New radiotherapist (is that what you guys mean by RT?) kept asking me if I was doing my exercises like it's all my fault! Wouldn't entertain any suggestions I made about making life easier for me - for example maybe putting a soft cloth over the hard edge. Felt she was more concerned about what she needed to do and not what I needed. Rubbing on so much cream I can almost taste it.
0 -
Elizabeth, I think the radiation technicians (if that's the right term) are under pressure to get patients through in x number of minutes or there is a domino effect. Perhaps say, "I know you're committed to making this experience as comfortable as possible for your patients. I think a soft cloth could help my arm pain without altering my required positioning."
Lyn
0 -
Elizabeth, that's kind of rude even if they are on a time crunch. It wouldn't take them but a minute or two to get a towel to help cushion your arm. The form was way to hard for me to lay on it for 10 minutes so I asked for a towel for a little cushion. They got the towel, I was comfortable and they made notes in my file for setup requirements. It doesn't take that long and if it does then they should speed it up on their end. You've got enough on your plate withoutradiation techs making things worse. JMHO
0 -
Connie, a shorter treatment would have been nice indeed
0 -
The towel sounds like a good suggestion, Lori. I'll see how the machine feels when I go for my setup and ask about it then.
MJ
0 -
The early testing of the Canadian protocol did limit inclusion of large-breasted women, but as the shorter protocol became popular in Canada and England, I think that criterion was relaxed, particularly when prone position is used. A tad early, but I hope everyone has a comfortable weekend!
Lyn
0 -
Four days down.... I've gone from sunburn-like feeling to sore chest and armpit muscles. Weird! My breast is also swollen.
I'm also having stomach issues, but have no idea if it is related to rads. Feel like my stomach just won't empty. Constipated too... fun (not)!
I am receiving 16 days hypofractionated radiation followed be 4 days boost. RO said that if I were 70yo they wouldn't even do rads bcuz of how short my life expectancy would be... I guess I should be thankful I'm not being put out to pasture!
0 -
I'm curious as to what the RO will tell me on Monday as I AM 70 and feel I have a lot of living left to do. Since my surgeon told me I'll be having radiation, I hope the RO is on the same page.
MJ
0 -
MJ, he needs to do what you think is right for you not what he thinks is right for you! Who's to say how long anyone's life expectancy is? Patients surprise their doctors everyday. As for me? I'm giving all my docs a run for their money!
6cats, how rude of your RO. No one tells me how long my life expectancy is, even if they are right. I just hate being told what to do.
0 -
WenchLori - like your style!
I have three left and counting down.
Gentle hugs to all. Be good to yourselves.
0
