A rad onc weighs in on radiation "burns"
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bump to SummerRads2014 great info!
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Elizabeth - good to hear things are looking up. Such a journey and so many choices...hope Thelma&Louise make you smile and you are satisfied. Grr, PS with no manners, but you know how to speak up so know you will get the best care,
I'm doing good. Seems funny, but no summertime tan. The rad girl looks good, but the skin is different texture so I'm not going for a SoCal beach bunny tan. Have mike LE so wear dragon sleeve...:) AI kicked my bones so now Zometa infusions...gosh there's always something and trade offs...
So glad we had each other during rad countdown...keep in touch
Fingers&toes crossed for your finishing touches!
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Thanks 'lulu! I'm not up on all the shorthand. LE and dragon sleeve? I take it Al is chemo? Anyway I hope you tolerate the Zometa well. I still have slow-healing joints & bones from Herceptin. MO says eventually that will improve back to normal. I ran my toe into a door in Feb. Four months before redness & swelling went away and it's still tender! Minor complaints.
As far as rads, I have a kind of crater edge of tough tissue all around the MX site that is more obvious since the DIEP flap surgery. I have had this area of perpetual purple bruising there but with my new lady it looks like the bruising is finally starting to fade, yay!
Best wishes with the Zometa. How long, how many infusions?
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So I know this is a ways out, but it is something to look forward to after treatments and doctor appointments for 5 straight months. We booked a trip to FL & Bahamas in Feb2015. My last rad is 9/5. Wondering what precations and what sun exposure I will be able to do as far swimsuit, swimming and sun? Is it dumb to assume that I can just wear my lowcut 1 piece suit? + I always use a good sunscreen as I am fair complextion.
PS I may cross post this to get other opinions and comments.
Mari
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This year I had a lumpectomy for a tumor that was so small the Mayo Clinic said we were lucky to see it. Great margins, negative nodes, life is good. Whoops triple negative, grade 3. Had chemo AC/Taxol (never again) 33 rads, left side supine position. Finished all except 5 boosts next week. what do you think about survival?0 -
Mari -'can I come! Love the beach, sailing, snorkeling...I can squeeze in your check baggage I'll pay the overage...ha ha! You will so ready for a get a way vacation. Ask your RO for their advice...and check out costco or sports store for a body top that protects from sun exposure...I wear m tankini and just drape my towel over the rad area and keep lotion on to moisture skin. Wear a big hat does wonders ... And has artitude:) I swim in salt water pools no chlorine and am learning not to be so compulsive about tan...just enjoying life is a beach
)) lgoldie - what does your BC team say. Sounds lke you are on top of this and thrown everything at it congrats! You might wish to update your profile, but I don't think anyone can ever say with 100% confidence when our expiration date is ...so I would change my focus on enjoying life each and every day. Gosh, all bets are on you living a long wonderful life... BFF is 10 yrs out triple negative and living a very good life...never looking back...kicking €¥¥¥ forward. Here's to dancing with NED forever:)
Elizabeth - the plan is Zometa every 6 mos with annual DEXA Scans to ensure no more bone loss. So 5 yrs:)
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Thank you for posting. I am scheduled to start the radiation process tomorrow. I found your words comforting and appreciate the knowledge going in.
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OneLump - breathe! You will go great in laser tag. It's very mental showing up each day and jumping up on the table, but it doesn't hurt, and the beam is fast 20-30 seconds for each field and you can tell when it's about to begin and there's time to relax as the arm moves to the next field. Make it fun for you...reward yourself each week...wear stickers...put a smile on your heart!
If at all possible arrive early and catch your breath get in your zone and think healing light! Ooommmm
Hydrate hydrate hydrate! Really will help you feel better. Moisturize and eat plenty of protein, Greek organic yogurt with pineapple and almonds, and free boobing. The girl just does so much better without anything irritating the skin...so cami with the girl out...:)))
Also, ask! Have your team check out your skin each Friday...yes, RO will look on Monday, but it's nice to have the extra nod going into the weekend if you have any questions.
You will do great...:D
(((Hugs)))
Cindy
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With my lumpectomy 2 weeks ago they took five sentinel nodes. The tumor margins and the lymph node margins were clear. I am her2 positive and they now want to do 5 weeks radiation with sixth week boost to the tumor site and under my arm. The tumor was on my left side, low and close to the chest wall. I have a heart murmur and high blood pressure. Had chemo before surgery with pertuzamub and herceptin both which can damage the heart. I am scared and don't want to do radiation. I have a hard time trusting the doctors because I know that they're goal is just to kill the cancer whether they over treat you or not. Any lasting side effects, they are really not concerned with, such as neuropathy from chemo. I have read one article that seems to hint at herceptin causing her2 cells to be more sensitive to radiation, to put it simply. But there really haven't been extensive studies about her2 and radiation treatments effectiveness against this cancer. I am terrified of radiation and the side effects, which are numerous. They are different than chemo side effects in that many of radiations side effects don't go away after treatment. They want me to have a mammogram three weeks after lumpectomy but this is 18 days after and I am still sore and have swelling. I can't imagine getting a mammogram with swelling and soreness. Sometimes I feel as if they are so insensitive to how tender the breast area can be even when things are normal.
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mannettes, it is understandable to be terrified but ask you RO every single question that worries you. Mine was excellent, and compassionate. My decision was easy when we talked recurrence %'s after rad tx (50% down to 2-3%) and SE out weighed survival. Everyone's SE can be different but again weighing short term and lond term risks made it clear for me. And as my RO and BS said there are 1,000's of studies so don't be frightened by what just one says and trust your medical team. That's what I did and I am confident in my doctor's decisions. I hope you ask everything you need to know and find peace. I am 17 days post rad tx and my skin ànd lx site are healed and looking great. I still have some fatigue by evening, but am doing great! Hope yours goes as well and (((hugs))). We're all here for you!
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There is no way in hell I would get a mammo even now nearly 3 months since lumpectomy. Unless of course its more of an x-ray than the squeeze a melon kind. Seems odd that one is even needed. If the margins were clear what are they looking for, another tumor growth in a few weeks.
One thing I learned in nursing school. Medical tests are solely for the purpose to determine treatment.
So the question to ask is "Will the treatment change based on the results of this test?"
Good luck to you sugar..
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I would rather get another lumpectomy than subject that breast to a mammo so soon after having had one. I totally agree with Raider girl that you need to question it
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Ditto, I wouldn't have a mammy now either. About 3 months after getting my lumpy, while going through chemo, I found a lump in the other breast. My MD skipped all the preliminaries and went straight to the MRI. Those don't hurt at all. I did haver to pay some of the cost but it was worth it. Showed no cancer, just a new cyst. Good luck to you.
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I had a mamm follow up which was about 6 weeks post Lx & SNB sugery. It didn't hurt (I was worried but went), was pretty much the same as prior ones. I can't remember if my BS or RO ordered it???? Anyway, it was all good and actually gave me more peace of mind before rad started. That was my experience but others may agree or disagree.
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mannettes, you might want to get a second opinion on your radiation treatment, preferably from a separate medical group. I know I felt much better after seeing a second RO who confirmed that the treatment plan was exactly right for me.
I also had Her2+ breast cancer and a year of Herceptin plus chemo. I handled the radiation just fine, using aloe gel right after and Vitamin E cream and Aquaphor at home. I can give you details on that if you want. My skin did fine until the boost portion. That part is a whole other story, but again, I got all the info I wanted from seeing a second RO.0 -
I'm in day 10 of 18 treatments for the left breast and I'm reading all of this with interest. I started to develop shooting pains in my left breast a few days ago. I'm wondering if massaging my breast with aquafor can prevent any future problems with necrosis or other problems?
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Hello friend, Shooting pain in something that you absolutely need to talk to the rad md about. I had these odd zing like pains but I was told that this was nerve regeneration from surgery and nothing to do with radiation. Talk to your MD , the word "shooting" is worrisome to me, Good luck sugar.
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Thank you very much for this valuable information. Tomorrow I will have a partial mastectomy for 2 areas of DCIS. I am frightened about this, partly because I will first need two wire localizations done pre op. I've been through two stereotactic bx in the last 4 months and so I know what's involved. The fear of what will be left of the affected breast's cosmetic appearance of course is also of great concern. The fear of IDC being found as well as the DCIS already, is great. These are my immediate concerns. But perhaps my biggest fear is of the probable radiation treatments I will need to start in about a month.
Luckily, my radiation oncologist is very highly regarded and the suite is downstairs from where I work I hope she is as conscientious and kind as you are. The medical oncology clinic is adjacent to where I work, and the Breast Care Center is across the hall. Why, you may ask? Because I am an Oncology Certified Nurse! I work in the suite that gives the treatments for many different types of cancer. Including breast ca. But today I am a patient who is awaiting surgery and results, well on my own personal trajectory with cancer. My surgeon is of the more contemporary thinking that DCIS is really not cancer, but "high risk precancerous changes" in my right breast. (which believe it or not I find confusing and really not all that comforting.) Suspicious microcalcifications first noted on routine mammogram last summer started this journey. Unfortunately, the stereotactic bx attempt at retrieving some of the affected area was complicated by hemorrhage and the attempts at sampling 2 different areas, a clustered area and a more linear formation, were aborted.
I had to wait an additional 3+ months for healing to take place, another magnified mammogram end of October, another stereotactic bx(successful in attempt but only one of the two areas sampled) in November, and now my surgery tomorrow. I have access to many MANY professional web sites and believe me I am quite knowledgeable now about DCIS. Except for one, very critical (to me!) question that has not satisfactorily been answered; Is DCIS cancer or not cancer? Carcinoma indicates cancer cells formed in the skin or soft tissue, including breast. I am told that "clearly it has been shown that some of these cells do not transform into IDC." But does all IDC start as DCIS??
My path report so far shows high grade, estrogen receptor positive, cribiform, (pre?) cancerous cells. My younger (by 9 years) sister was diagnosed with stage 1 IDC as well as DCIS ER PR+, 8 years ago, found as a lump on mammogram. The difference in our lifestyles is significant, which I believe is why she was diagnosed at age 46 vs 62 as I am now. She had a lumpectomy, SN bx (neg.), radiation, and for some reason she declined Tamoxifen. I do not know how closely she is monitored but as far as I know no recurrence. My surgeon says that my "pre-cancer" is probably what she had a year or two prior to lump formation. Does that not mean that her IDC started as DCIS?
This is where I am today. I feel comforted by the information you gave regarding radiation treatments. Knowledge is power and I will be changing my focus somewhat from the surgery and Tamoxifen to learning more about radiation. What I "know" about it, shamefully, (I am, as I said, an OCN after all!) and what is fact are not consistent. I have actually never met our Radiation Oncologist but all my patients that go to her love her and highly regard her.
Thank you again for your post. I just joined this "club" today and thankfully, have not read the posts that prompted you write your response.
leenso52
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leenso52
Dont fear the radiation. Really its not that bad. Your Rad Onc can help a great deal. Just plan on some rest everyday, and to care for your skin everyday. I had 33 consecuitive treatment and 5 booster. I was very pink, and very fatigued . But no pain...at all. Really.
The needle localization.....I had two. One for the cancerous tumor right breast, the other for the suspect tumor that couldn't be reached with needle biopsy. I had a block. Easy breezy. I felt nothing on the blocked side. A pinch and prick on the left.
I had a lumpectomy on the right breast. The tumor was 3.2 cm. It left a golf ball size scoop missing from the bottom half of the breast. I feel that in 4 months is less than in the beginning. When I first changed the bandages I freaked. My breast was brusied, lopsided, and this hideous dent but 4 months later its completely different. So improved. ( Mastectomy ladies please forgive me this vanity, I know I am fortunate).
I have never heard DCIS is cancerous. It may stop right there or it may break out of the situ and become quite invasive.
When I went in for the lumpectomy right side I insisted they remove the "suspect" on the left side that kept coming up in mammos and causing alot of grief when they never could be reached with fine need biopsy. this were up against the chest wall. My lungs are right there and I wanted it out.
I have sadly found that not all MD's read the same medical books. Also, not all are top of the class. Sometimes its a matter of opinion.
We must empower ourselves with knowledge and be our own health care adovcates/
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Leenso52 - will be in your pocket for surgery {{{squeeze}}}
Rest, recover, heal...rad time will come soon enough.
Rads were easy, but a daily mental grind of showing up, jumping on the table, getting in the zone for the 20-30 sec zaps, and then doing it all again the next day. You got this laser tag warrior.
Please give yourself 'NO C' vacations between each tx. Yes, a no talk no discuss no questions, just return to as normal as you cam make your new normal and zone out... It's nice to try and take a break from focusing on this disease and having all the answers and knowing the future...just too much stress. So heal, breath, and soak on everything that makes your heart smile
Sending calm confident thoughts and prayers....you got this!
(((Hugs)))
Cindy
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Raidergirl, you are so right. It was quite an eye-opener for me when I first discovered all those things you pointed out about different doctors and different levels of understanding and opinions. We absolutely need to be our own advocates. Also, yes, daily skin care is important, and we do need extra rest to heal the collateral damage from the rads. I found rad therapy a walk in the park compared to chemo. Being here with friends helped the most. Leenso, we are here for you. Hang in there, and keep asking questions. -Elizabeth
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Wow I sure wish I had checked back sooner than now! I could have used your kind words and experience last Thursday! But I'm still feeling it now and am very appreciative of your kind words and support.
My surgery went very well last Thursday. The worst part was the needle localizations for THREE areas of suspicion! Took over an hour and was not really like the stereotactic bx! But I decided to use this huge abstract picture on the wall to gaze at and try to meditate. My visions went from somewhat comforting to very frightening, to searching for other, more loving and safe places to put my mind's eye...then I found it. Upper right corner, in about 10 inches. A little girl dressed for winter, looking at me. I decided she was my angel and I was ok!
I let myself be vulnerable and accepted help when offered from my family and friends. My older sister came to the hospital and spent the day, seeing me between procedure and after surgery. It meant so much to the both of us (she and I.) My daughter drove me home and stayed with me for hours. I took people up on their offers to come the next few days. My girlfriend is still here till tonight and I start back to work tomorrow. I need to work to regain my sense of self and purpose, and yes, POWER!
My surgeon called me last night with final path report. One area on lateral aspect came back benign. The area previously bx had no invasive cancer thank GOD and margins are clear. Do not need more surgery. So far I'm shocked that so little tissue was excised! My breast looks almost the same as before! I am so relieved on so many levels, though it is hard transitioning from "(pre?) cancer survivor" to the active and engaged (in life) person I was. I feel dizzy today, as I have since Friday but I guess it's time to knock off the Tramadol (down to once daily) and just take Ibuprofen. The discomfort feels deep, (those wires went deep!) but it's mostly tender to touch. 20 lb weight restriction. And just common sense. I work with oncology nurses who will be covering my back! I have my first Medical Oncologist appointment Friday and Radiation Oncologist Monday, and see my surgeon Tuesday. I am really hopeful that I won't need radiation, but if I do I am so appreciative for your comments, especially about taking "C breaks!" Especially when I go back upstairs to the Infusion suite. All discussions and or questions regarding cancer will strictly be about our patients!
Finally, I asked my Breast Care Nurse Navigator this am if I am a cancer survivor? And she said "Of course you are a survivor!" She was emphasizing survival but my question was really am I a CANCER survivor? Am I truly a Warrior like the rest of you? I would be proud to be!
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So happy to hear that things went well for you. Its likely that you will have radiation. I've not known anyone who hasn't. It kind of sterilizes the area.
But the treatments will be specific to you so dont compare yourself to others. The Rad Onc told me that unlike a microwave with a popcorn setting they dont have a breast cancer setting. LOL
As for survivor-ship. I was told that I am a survivor from the day of diagnosis to the day of my demise ( of cancer or anything else). Because you are surviving every step .
Also I was told the following:
During treatment or anyone with an active cancer is = living during cancer. After treatment but on hormone thereapy etc= living with cancer.
and once you're done with all treatments and off hormones therapy you are =Living beyond cancer.
You are a warrior and everyday look at yourself in the mirror and say " I will be beautifully brave".
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leenso52 - Congrats! Clear margins&nodes...you did it! Yes, you, we are survivors
. Take it slowly easing back into work, watch the arm, and take a no c vac...the next step will come soon enough. Yeah, for accepting help...it's hard to reverse roles and let others do for us...but it is a blessing for the too! You are loved )) RaiderGirl - yes, tx is all personnel and unique to each...luv the popcorn, Soon it will be your 6 mo cancerversary and then 1 yr, 2 yr, and....100!
(((Hugs)))
Cindy
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RMlulu
6 months! Wow. Who'd believe it. Sometimes it feels like years and sometimes like it just happened.
One thing for sure, nothing is ever the same in bad and good ways.
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Celebrate each milestone....:)))
Life is worth celebrating...take your victory happy dance...:D
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I am so grateful to now have you women in my life! Had a really bad second day back to work (I am an oncology nurse) and am feeling a kind of disconnect. Not with my patients but with procedures like starting IV's and stuff. Came home so discouraged and weepy. What's up with that?
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Leenso52 - Breathe! Be gentle with yourselves...this is all so new, surreal, and raw...weepy, disconnected, up, down, is all normal...there's some PTSD with each step and then after active treatment stops.
We brave through so much with our big girl panties up so high...that we don't allow ourselves to breathe, be real, feel...it's okay...it's all very overwhelming...it's ok to let your guard down and feel...I think the first time I cried was when I received call on nodes&margins...hubby said he didn't know that I was that scared...brave warriors sometimes go hide under the covers.
Your an oncology RN...you see the good, bad, ugly...of chemo...the ugly reality of c hits you in the face. My ROs RN went thru rads along side me...same MO...see each other for Zometa infusions...yeah, our new normal hits...but we dance together...
Hope tomorrow is a better day and the next even better...
(((Hugs)))
Cindy
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Today I can NOT stop crying. I am meeting my new oncologist in one hour. It is all so complicated for me and I don't even know how much of it has to do with my diagnosis. Which really is not that bad. i am very lucky. But, still I am having a major melt down about myself and my skills as an oncology nurse. Something feels disconnected. I don't know how much to tell him and here is why. This man comes highly, HIGHLY regarded in the Oncology Community. So much so that my own hospital was lucky enough to convince him to work with us. He will start at my hospital in February, 2015. Currently he still practices in Maine, only one town over from where I live! Sounds perfect, right? But, I will not only be his patient, I will be working with him come February. So how much do I tell him?? I hear he is extremely compassionate and kind. Should I only be his patient today and not worry about what he will think of me as a nurse? Or worry about February? I feel pushed to the wall here, by myself of course. I know I am good at what I do, and am, except for 2 very critical skills, good organization and IV insertions. Never been the "go to" nurse there, but do manage most of the time. After yesterday I honestly feel I can't do any of it anymore. Be gentle? I'm not very good at that and never have been. But I think I have no choice but to trust this man, as my onCOLogist (who knew I'd need one, so "soon?") who will help me deal with this crisis, as he patient.
Thank you everyone for all your support.
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leenso52 - breathe, be honest with self and MO.
Ask for referral to Onc social worker...helps to share and just release...
My RO and tech are a team and her honesty was valued and respected.
In your picket {{{squeeze}}}
Cindy
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