Winter rads 2014-2015
Comments
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Hi all;
Was having some swelling, pain and redness, saw BS today, I have an infection. How in the hell does that happen almost 5 months after surgery??!!
I told them going in that I have had bad reactions to sutures 100% of my surgeries but they just gave me the "crazy lady" look. And now, here I am again.
I was even more devastated when they suggested I may not be able to have reconstruction.
WTF!!!
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Oh Quiggy! That just can't be so. Don't take no for an answer. Talk to your Plastic Surgeon. I could go back into the posts and find out, I'm sure, but being lazy about such things, what kind of reconstruction are you looking at? What are the plans for dealing with the infection? - darn it all.
I understand the crazy lady look. I have terrible reactions to tape. Why doesn't anyone believe us? Hugs.
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So sorry Quiggy...hope everything works out for your reconstruction.
No heart surgery for me right now...they are doing another echo the end of July to look again but I may not have to have the valve repaired at all, yeah! One more thing I can quit worrying about.
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CoyoteNV, I had left breast lumpectomy. L breast is misshapen and reduced to a B. R breast is a D. Planning to reduce R and repair the L.
For the infection it's antibiotics. They used a sharpie to outline the area so they can see if it's growing. I go back on Tuesday and may have to to "draining."
It SUCKS! I'm pissed and depressed but doing what needs done.
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Thanks WheelyGirl. Great news about your heart!! Hopefully the July echo will be good news too.
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Quiggy, no! How can you suddenly develop an infection 5 months past surgery??! NO prior signs of infection?? Are they certain it's infection, and not some weird allergic reaction to a retained internal suture or two? And also, how can they say you can't have your reconstruction? I agree with Coyote, don't take no for an answer. If it IS an infection, they can clear it with the appropriate antibiotics. If something has to be drained, they can drain it. And then they can take precautions to avoid problems after your reconstruction. It's 2015, I think modern medicine can figure out a way. I'm so sorry, though, that you're having to deal with this.
WheelyGirl, so glad to hear you might not need the heart surgery!
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"amylsp, I finished rads on March 30 (15 whole breast and 4 boosts), and NO ONE has ever told me not to use sunscreen in the radiated area (about the same general area as yours)."
Thanks so much Kayfry. I've also searched online for contraindications regarding sunscreen on irradiated skin and can barely find anything. I think this is a case of my RO erring on the cautious side.
Does anyone have any experience with more natural sunscreens that don't have a lot of additives?
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amylsp, I think the first thing is to make sure it's effective (I use spf 30), and the next thing is to make sure you don't have any sort of allergic reaction to any of the ingredients (so try it on your arm or some less sensitive place first). Because I have a history of being a bit of a skin cancer factory (lots of basal cell lesions, a couple of squamous cell, never a melanoma, thank goodness), I've done a fair amount of research on sun screens. The one I buy currently is pricey but worth it to me. It's Coola classic sunscreen, unscented moisturizer. It's labeled organic, says it contains 70% organic ingredients, listing several things including organic rose hip extract, evening primrose and linseed oils, safflower, Vit. E & C, organic shea butter, plankton extract, cucumber extract, etc. It feels very nice on the skin, for a sunscreen. Expensive, as I said, but lasts a long time. I haven't used it yet on my irradiated skin, but that's what I'll use whenever I do expose that skin to the sun. No doubt there are plenty of other good ones, but I would look for organic, mostly natural ingredients.
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Thanks kayfry.
I had a seroma after surgery that resolved in a month or so. However, I continued to have pain and minor swelling both of which the RO and BS dismissed. The RO indicated I was overreacting.
My theory is the infection has been there all along and it's finally coming to the surface.
Sure seems to me that cancer doctors are quick to push us all into this defined box of treatments and how we're supposed to respond. When we don't fit in their box, they dismiss the complaint. Sometimes it works out.... Sometimes, not so much. I'm thankful for the cancer doctors but wish they could be more human and actually LISTEN to their patients.
grrrrrr!!!!!!
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Yeah, we should all expect that, really. Unfortunately, I guess, doctors are human even while not seeming very humane. That is, they have personalities, and some more sympathetic and better listeners than others. Well, I hope now that they can't deny what you were saying and feeling all along, they will quickly deal with the infection. And I still think it shouldn't mean you can't have your reconstruction, once everything is resolved.
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amylsp. I was told to use sunscreen if any of the radiated area was exposed. I bought some spf50 tops from Lands End too.
WheelyGirl. Super encouraging news.
Quiggy. That is rotten news. I agree that there must be more that can be done. Can you consult with another PS?
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You know I had one of the best doctor/patient experiences yesterday with the heart surgeon. He told us the results of the echo from last week and his thoughts on that. Then we discussed my symptoms one at a time and what might be the cause of them. Every time we finished discussing a particular symptom he would say "does that sound like a good plan to you, what are your thoughts?". It really made me feel like I had some control. I felt very at ease and much less stressed and worried about the heart thing when I left his office. His main concern is that he does not want to put me through an unnecessary surgery right now. I wish my MO was more like that, he gets offended when I question something he wants me to do. It is so frustrating.
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In my humble opinion, if a doctor gets offended, that's their ego problem, not ours. I would be offended by their attitude and tell them to cut it out and answer my concerns. Too bad if they don't like it. It's their job. Love, Jean
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As someone here on the boards pointed out..... Keep in mind, the doctors work you for you!
Most of them all well compensated, too.
I'm so glad that I have had wonderful doctors at my facility.
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I was told to definitely use sunscreen. Many of them contain alcohol which can be irritating. Try Blue Lizard for sensitive skin. No alcohol. I will also wear a rash guard
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Wheelygirl, that's great news! Hope your next echo is good too. It's great that your doc is that collaborative too.
Quiggy, my heart goes out to you! That is really rotten luck. I empathize with your frustration. Hopefully your antibiotics will do the trick. Apparently radiated tissue is more difficult to heal post-op and infection doesn't help. That being said, I wouldn't hesitate to get a second opinion if need be. Maybe postponing it a bit will be all that's needed.
My news is mixed. I've got one week of hyperbaric treatments under my belt. Am tolerating them ok with the help of Ativan for my claustrophobia. The stuff really knocks me for a loop though so its back to being tired all the time. Have enjoyed the weekend without it. I saw the new plastic surgeon on Wednesday and really like him. He is thoughtful and honest without being cruel. He is the first doc that seems to have really looked and felt how big the area of necrosis still in there is. He is not completely convinced that it will heal without getting that removed too. The hyperbaric treatment increases the blood supply to the area to promote healing and make another surgery (Ughh!) more likely to succeed. He also said he would have to remove part of the areola too and there is no telling what the boob will look like after that. I may very well end up in Quiggy's shoes. So, after thought and discussion we decided to go ahead with 4 weeks of hyperbaric and re-evaluate then. For some reason the boob is really sore this weekend which scares the hell out of me despite the previous negative cultures. Still doing daily irrigations and repacking. Time will tell, I guess. One day at a time...
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mqt64. I am sorry for these complications. Good that you have a doctor now that you feel comfortable talking to and one where you can work together to make decisions. Some consolation though mainly discouraging that "over" wasn't really "over".
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mqt64 and quiggy ~ I am so sad that you are having such healing difficulties. I had no idea that a lumpectomy could have such severe complications. I would never have thought that the simple way was a mastectomy and reconstruction. Many hugs and prayers for you both.
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This Friday will be 2 weeks post rads. There is an area on my clavicle that has gotten very red and itchy. My underarm has also gotten redder and is brown in some areas. Still using Aquaphor and also using a prescription steroid once a day. The femara also has me hobbling around like a 90yr old. So tired of this, I just want to felt better, to feel normal. Whatever that is. Love, Jean
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Oh, Jean. I was so glad when I could stop with the messy Aquafor. That redness will subside soon. Hang in there with the lotions and let air get to those areas if you can.
I am on Anastrozole so I don't know about Femara, but with Anastrozole there has been a lot of discussion about the maker. Initially my pills came from India. Some reports from users indicate that the fillers in the pills there cause side effects like joint pain. I had my pharmacy switch me to the TEVA brand from Israel because folks on Breastcancer.org had fewer SEs with that. I have asked two MOs and neither had any info on this. Possibly Femara has alternate manufacturers that you could try.
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Jean, I totally understand what you're saying. You WILL find a new normal again!! You're on the home stretch girl. I'm sending you a big - gentle hug.
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thanks Coyote NV. I am surprised too, thought lumpectomy was the less intrusive route (if there's anything less intrusive about cancer ha ha). Guess a few of us pulled the short straw!! I'm trying to stay hopeful, I just know this will end some day.
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Thanks mqt64. My heart goes out to you as well. I'm trying to imagine being in your shoes, your strength is an inspiration!
Hopefully the coming weeks will bring the healing you need and then you'll be ready for some repairs. At our current trajectory, we'll be looking at a similar timeline. If I "can" have surgical repairs, I'm thinking end of the year or early 2016.
Heading to the BS today for wound check. The pain, heat and redness are still there but a little less. Hoping it's better. So ready to be done!! Pretty sure you are too.
Big hugs to you. ((()))
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Thank you everyone! I would not have been able to do so well, and make it through all 33 rads without all of you! I hope everyone has healed and can now move on. I am 7 weeks out this Thursday.
This was my last day at rads, showing off my Diploma, wearing my very cheap, very blinged out tiara, and holding 33 roses. Super big finish! I always wear my tiara to chemo, it has super powers, and makes all of the nurses laugh. The Doctors just shake their heads and smile, I see a psych consult coming at some point........but the tiara is worth it
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Quiggy- I'm so very sorry your'e having such terrible issues. What a very unwelcome surprise after all you've been through!
By the way, you're SPOT ON with this:
Sure seems to me that cancer doctors are quick to push us all into this defined box of treatments and how we're supposed to respond. When we don't fit in their box, they dismiss the complaint.
I'm 6 weeks post rads and having debilitating muscle pain on my entire left side where I was radiated, front and back, plus lymphedema in chest, arm and hand. I had almost no issues except tightness during rads. That plus the stiffness and pain from early menopause makes every day a fight right now. I began this journey a 43 yr old in great shape and have finally become very, very angry everyone except my PT seems to think it's totally ok for me to feel like I'm twice my age from here on out.
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Beachbum102. You've given us a good smile, much needed as some of our "finishers" are having to struggle with complications. You look great in a tiara. I can't imagine what so many roses would smell like.
So sorry quiggy and Texas94 for the tough hands you have been dealt.
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Texas94, thanks. I feel you as well. All of us have endured unthinkable things and the reward is regaining our health. SUCKS that any one of us has to face these "bonus crap" rounds!!
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Hi everyone... Saw the BS today. He opened a small area, removed the sutures that didn't dissolve and were incased.
Going to do more antibiotics and x2 daily clean/treatment with neosporin.
Hopefully this will do the trick! I'm so OVER all this crap!
Funny... We discussed my issues with sutures and while he was working on me, blamed it on the RADs! WTH!!!! RAD onc said it was the surgery. I have to laugh .
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Beachbum, love the bling and love your sense of humor.
Congrats!!!!
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Oh quiggy, so sorry you are having such problems and that the doctors are such jerks. Maybe they should rent a boxing ring and slug it out without you in the middle. Why not suggest it to them. Teehee!
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