Winter 2013-2014 Rads
Comments
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Love the toes Pokemon! I had a pedicure the day before I started chemo, too! Hope all goes well for you
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Sally -- glad my post helped! I have so enjoyed this month of no treatments, and about a week ago DH took me out for Mexican too. I indulged in a strawberry margarita.... Yummy stuff!
(((Hugs))) to everyone who is struggling with decisions -- it is so hard to sort through the statistical probabilities and to make choices. Our age, our cancer Dx, our treatments and how we have tolerated them, and many other aspects of our personal situations figure in the decisions. Know that you will do what is best for YOU, and once you decide, move forward with peace and confidence that we support you.
For what it is worth (and I am just a patient trying to understand this like all of you) my understanding of rads following chemo is that there may be rogue cells which had an immunity to the chemo, and the rads would zap those. It is fair to ask this question (many thanks to another poster on another thread who had this in her list of questions for the RO): What would be my risk of recurrence with rads vs. without rads, given the chemo and hormone treatments? Also (in my case), since I had a lumpectomy with clear margins and no positive nodes! and since any future recurrence in the same breast would require MX if the breast has been radiated, if I forgo rads at this time, don't I keep the possibility of lumpectomy/rads in my arsenal of any future recurrence? If that is true, please give the rationale for rads at this time.
I asked the last question of my MO, and he said I should ask my BS. He said the BS usually refers for rads after lumpectomy when she is unsure of whether there may be more cancer cells (particularly DCIS) lurking around or outside the tissue that was removed by LX. I called my BS on Friday to ask if she would explain the rationale for rads at this time, but I didn't get to talk to her -- I will share her response once I connect with her.
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In addition to BC I also have osteomalacia (Ricketts) so I take vit D 1000mg/day and my RO says to take Ca 1000mg/day because Arimidex causes bone loss. So taking the calcium is a good thing!
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Thank you TeamKim, that will be interesting to hear.
Would you happen to have the link to that other thread you quoted from? Thanks
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Here's an article on this site that explains radiation getting those rogue cells -- and points out that for early stage BC, radiation cuts in half the recurrences within 10 years after treatment, from 35% to 17%. http://www.breastcancer.org/research-news/20111019
On the Komen site, at http://ww5.komen.org/BreastCancer/SurvivalandRiskofHavingCancerReturnAfterTreatment.html I noticed this very interesting paragraph at the bottom of the page under the topic of mastectomy and local recurrence:
"The chance of local recurrence increases to about 26 percent when cancer is in four or more lymph nodes [113]. Radiation therapy to the chest wall after mastectomy is given routinely when there are four or more positive nodes. This reduces the risk of local recurrence in five years to about six percent for those with positive lymph nodes [113]. "
50% reductions and a reduction from 26% to 6% are pretty compelling to me!
Ellen
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Thanks ellenkc! That's exactly what I was looking for, though not exactly what I wanted to hear
I would like my RO to break down for me how those percentages are distributed among the different cancer types (ER + or minus, HER2 + or minus, triple negative and so on), and whether chemo and/or hormone blockers were in the picture. The information you provided helps me phrase the question.
Thanks again!
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Cari3047: I've been watching your posts regarding your vacation post treatment. So, when I was at my last appointment with my oncologist I asked specifically what were her recommendations after radiation therapy. Her answer: Avoid exposing the treated skin to the sun. If out in the sun, use sunscreen with SPF 15 or greater on treated skin and said I should follow this recommendation for life. She also said that since I'm not going to the south of France for vacation, I shouldn't have problems NOT exposing my breasts to the sun!
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Out of sorts today. I was supposed to start my treatments on the 8th but due to some scheduling differences, my start date is now Wednesday (15th). Will just have to adjust my head that I've only been delayed a week. When I saw my oncologist this past Tuesday she said that since I wasn't having reconstruction until August, she would go ahead and have my BS remove my port. So glad to be getting that out and not having to wait.
Just wondering if anyone else who had bilateral mastectomy and expanders inserted. My PS said that he liked to wait six months after finishing radiation to do the reconstruction to allow for tissue healing around area radiated. Anyone? Would appreciate your input.
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Paloverde -- Here is another study that in its introduction says "Therefore, it would be ideal to identify favorable subgroups of patients treated with breast conservation for whom radiation could be avoided. In the past two decades, several randomized trials attempted to do this, but unfortunately most of these trials were unsuccessful at identifying a good risk subset that could be spared radiation." http://jco.ascopubs.org/content/31/19/2367.full Not about mastectomy, but likely there are parallels.
It goes on to say that the only group they could identify that radiation didn't make a difference was over age 70 with early stage, breast conservation and tamoxifen -- and the only reason radiation didn't make much difference was that the rate of recurrence was only 5%.
Sorry, still not the answer you want. And I believe the other studies assumed surgery, chemo and hormones as needed.
Believe me, I wouldn't go through this a second time if it wasn't necessary. -- Ellen
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Hello ladies. I should be starting radiation this coming week. Look forward to meeting you all.
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Paloverde -- actually LizzieK posted the list of questions on this thread back in December. I couldn't figure out how to link you back to that post, so I will cut and paste below. Thanks Lizzie!
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Because I went through radiation treatment for another cancer and am also a person who likes to research everything I put together a whole list of questions for each member of my treatment team. Do you have an Iphone? You can get an app that allows you to record what the doctor is saying so you can concentrate on what he/she is saying and review the recording later on. I did this for all my second opinions and it is amazing how much stuff you don't remember or don't get straight. The app is called AudioMemos and costs ~$10 for the full version (well worth it). I did ask one doctor if I could record the session but it is easy to just tap record as if you are checking your email if you don't want to ask.
I bring my list and let them go through their recommendations and check off the questions they answer that I brought and then ask any questions that remain.
Here's some of my questions for the radiologist:
- What will be frequency and duration of treatment? (days per week for how many weeks)
- How long does each treatment take?
- Will you do the radiation with me lying on my back or my stomach?
- Is partial breast irradiation an option for me? If not, why?
- Is an accelerated schedule an option for me? If not, why?(On both of these if it is because they don't offer it you may wish to seek care elsewhere if you are a candidate - Stage 1 no nodes)
- How much radiation in total will I receive?
- What type of equipment will you be using? (IMRT, 3D)
- What will you do to minimize the amount of radiation to my heart (more of a concern if your cancer is on the left side, like mine)
- Do you utilize breath hold to minimize heart exposure?
- What is the risk of second primary tumor from the radiation?
- What are the possible side effects of each treatment option, both in the short term and the long term?
- What can be done to relieve the possible side effects? (burning, fatigue mostly)
- How will this treatment affect my daily life? Will I be able to work, exercise, and perform my usual activities?
- How long after treatment will I return to normal activities?
- What is the risk of recurrence if I don't get radiation versus if I do?
- What is the survival rate if I don't get radiation versus if I do?
- If I get radiation and then get another cancer in that breast I will have to have an mastectomy because you can't usually get radiated twice in the same area. There is a study showing that older woman may not need radiation (if early stage, no nodes). If I don't have radiation and it reoccurs I could then have a lumpectomy and radiation. Explain your rationale for doing radiation now?
- Will you be able to accommodate my schedule (work, travel time, etc.)
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Hi bethf7 I had a left mastectomy with expander and I just started radiation on the 8th my ps said to wait as well because the skin will need time to heal after rads. We also did not do any fills because he wanted me to deal with one thing at a time chemo now rads and tamoxifen. Reconstruction later this year.
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Hydavis42: Thanks for the reply! Just feeling so over these expanders...some days they are beyond uncomfortable and Tylenol doesn't help. I am so ready to find my normal again and get over this whiney stage! I'm hoping the radiation treatments go smoothly!
Welcome Alfranco! The journey will be worth it together!
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Welcome Alfranco!
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EllenC - thanks for the references. It seems that most are oriented to hormone positive, and unfortunately I'm not. Also seems to be more research on lumpectomy. But I was glad to read the definition of 'local recurrence'. The first time around I had a BMX w/clear margins and SNB w/two clear on each side. After recurrence two years down the road, pre-adjuvent chemo & ALND surgery for the recurrence, they found 1 node still positive - so I've been doing more chemo before rads.
Edited to remove the doom & gloom. Guess I just need to do more research to convince myself that rads is necessary.
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Bethf7...I had BMX in November with TEs. I am completely filled on my radiated side and half filled on nonradiated side so it won't get in the way. My ps said the best chance of success for implants was to be filled prior to radiation and wait 3 mo for exchange. This of course is his opinion. I know others on this site whose PS plans on waiting a year before exchange. I have also met others who have ad TEs placed after rads but had fat grafting with it. I think if I feel my skin isn't ready I will delay exchange. Hoping the rads don't destroy my nice new left foob completely. I start tomorrow. Full radiation of breast, lymphs nodes above and below collar bone and lymph nodes behind breast muscle. I am also going to have a bolus over entire breast which intensifies the beam. Oh joy! I have my arsenal of creams and oils ready though. Good luck to you on Wednesday.
-Joan
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Positive thoughts to those starting radiation this week. I have my first treatment later this morning and I have this weird anxiety going on right now. I know that the side effects are most likely going to be easier than chemo based on the feedback here, but its the unknown factor that is getting to me.
I had my CT simulation and tattoos, I have my potions and lotions to try and keep my skin nice and happy. I now know that I will only get 25 treatments as opposed to the 30 we were originally discussing. I'm getting my breast, axilla and clavicle area radiated.
I will not be getting the extra 5 boost treatments to the surgical site since it cannot be clearly identified on the CT scan and therefore my RO cannot accurately target the surgical site for the boost. I had a lumpectomy. Has anyone else experienced this? My RO is referring me to another RO who does brachytherapy as it may be possible to identify the surgical site by ultrasound and get the boost that way. I'll know more details when I meet with him or her.
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I havent been on here for a few weeks but thought Id better jump back on, since its great here.
I just started my radiation this past Thursday. Today is my 3rd one. I will have 30 total. I also got tbe tattoes. Mine are just the size of a pen dot but id rather have the temp ones.
So far so good.
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Oncearunneralwaysarunner- I am with you on the anxiety. Feeling very scared to the point I wake up every couple of hours at night.
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oncearunner, interesting that the RO cannot find the surgical site. Did you have 2 incisions? I assume all of us with lumpectomy do. I remember my surgeon talking about getting the job done with one incision, but was not the case. Keep us informed, it seems like a simple thing, but I realize it is all much more complicated.
I still have what appears to be a malignant stow- a- way node in my axilla. Hoping to get better explanation on Wed. It showed up on PET scan, after surgery. They told me maybe just a hematoma from surgery or an inflamed node. It's still there, still looking very suspicious even after aggressive chemo..I have been told " let us worry about that" several times now. It is annoying, & causing me more anxiety. I will ask what the plan is & can they go back in & remove it or at the very least biopsy it. I dread the thought of the surgeon cutting through the muscles again....I was told that the chemo, rads or AI would be sufficient to handle it, but I am not feeling comfortable with that.
Zap # 14 today....
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Oncearunner, when I had my CT scan they taped wire over the surgical scar. I'm assuming it was for identification of the wound bed. Did they do that with your CT scan?
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Holeinone - sorry to hear that there appears to be a suspicious node. Hoping that it just looks suspicious, sending positive thoughts your way.
As for my surgical site issue, I have two incisions, one in my arm pit and one on the bottom of my breast. They put the wire on the incision on my breast for the CT scan and that showed up clear, it's just that he can't see from the scan where the internal work happened. Apparently it happens in about 20% of cases and could be related to the speed at which I healed. By not seeing where inside my breast tissue was taken out with certainly, he can't accurately target the boost. I meet with the other RO in two weeks and should find out more then.
I'm feeling less anxious now that I have had my treatment. I don't do well with the unknown! It was painless and no skin issues yet but I know it's still really early in the process
Now to eat my daily Cherry Blossom, I have a stash set up in a pyramid on my mantle as a makeshift advent calendar to count down treatments. -
Oncearunner, Great idea for the countdown. It's frustrating to be in the lower end of the percentages. I seem to follow that trend as well since I've been diagnosed, but I'm optimistic that will change.
Holeinone, My thoughts are with you. Chemo is supposed to take care of this stuff. I haven't even started radiation yet and I've developed a new lump in the same breast. We are hoping it's a seroma, but I can't even get an ultrasound until Jan. 20th. It's really nerve racking. I just psyched myself up to do rads and then this popped up. Hopefully it doesn't interfere with me starting.
allebasi, I hope your treatment goes well this week with minimal side effects.
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I completed treatment 4 of 35 today. This will be my first full week of treatments.
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I start tomorrow. Had my simulation today, tears kept on coming down. I am so mad that this disease takes so much from us. I cried so hard when I got to the car. I am thankful to be alive, that I wake up every morning, but so mad that cancer exists and so many of us have to go through this, including children.
Sorry needed to vent a bit.
Hope everyone is doing well.
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alfranco,
I have been so much more emotional during rads also. Chemo, I was very stoic, just concentrating on getting through the day, & trying to eat. Now, feel so much better physically but the tears start everyday putting the burn cream on after the zap. I am freaked out about a node that maybe, probably has cancer in my axilla. The RO is nice, more compassionate than MO, but the "don't worry" speech is making me crazy. Maybe I would be teary eyed without this node issue. I think we are both 6-7 months now dealing with this, and it is so exhausting mentally.
Thanks for letting me vent...I know it will all get better....time heals slowly...
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Oncearunner -- interesting that they can't ID the surgical site. I had lumpectomy with oncoplasty -- they took out a wedge of tissue containing the cancer and "rearranged" the remaining breast tissue to give me a perky new girl. My scar looks like an anchor -- around the areola, straight down and along the crease at the bottom of the breast. But the cancer was at 3:00, so scars are no where near the "tumor bed." I have a second small scar under my arm from the SNB. Wondering if they will not be able to see where the cancer was, since essentially that area was reconstructed. Did you have any "rearrangement" of breast tissue while your BS was in there?
Alfranco & Holeinone -- hang in there girls. Tomorrow is another day. I seem to detect an uptick in attitude among those who have passed the halfway mark with rads. Once the glass truly is half full, every treatment is a step toward getting back to mostly normal. Try to think of the zaps as "healing light" instead of something destructive... Might help to put a positive spin on it. BC does take a lot from us, but on the other hand, we are so blessed that something can be done to stop the beast in its tracks. One foot in front of the other, we climb the mountain....
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Hello all,
5/20 done! It was nice to have the weekend off! This will be first full week and everything seems so routine now! Very pleased with the staff! Getting use to the pinkness! Feeling pretty good! Sending good vibes to you all for the same!
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OK, regarding the risk of recurrence and MX & rads that we were discussing above.....
I just talked to my BS, who I love because she speaks plain English, but at the same time she doesn't minimize my questions and treats me like an intelligent partner in my treatment. I asked her to explain why I need rads now, given my Dx, clear nodes and margins, etc.....
She says that it is all according to the statistical probabilities. MX leaves the patient with about 1-3% chance of recurrence in the same breast, while LX with surgery only leaves about 30% chance of recurrence. Statistics show that with radiation added, the LX chance comes down to 6% or less for that breast. Surgery and rads are for local recurrence, confined to the breast only. Chemo -- when testing on the tissue indicates it would be effective -- further reduces the chance of recurrence. In my case I was told by the MO that after surgery, with no further treatment, my chance of recurrence was about 30%. The chemo, rads and hormone therapy take it down to 4%. Since chemo and hormone therapies are systemic, they also impact the other breast, where rads does not. So there is some grist for the mill for everyone who is trying to sort this out (like me). I figured 4% chance of recurrence was pretty good, so I wanted to throw the whole arsenal at this thing.
Oncearunner, since I had her on the phone, I also asked my BS about finding the cancer site, and she said the rearrangement of tissue was not so extensive that they would not be able to find the place where the cancer had been located, and that boosts are a standard part of the post-lumpectomy rads treatment.
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Good Evening, today was 14/33...15 more reg and 8 boosts to go. So grateful for nice weather no delays weather related. Scheduled my CT scan for my boosts, was told I will have to lay on my side. Everything is going well. I'm scheduled for a mamo in 2 weeks, RO wants me to wait so the two docs will figure it out. I thought it was odd to have an appointment for mamo while doing rads...ouch. Has anyone else had a mamo while going through rads?
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