Winter rads 2014-2015

quiggy

Hmmmm... There's a thought Jean.

Not sure I have the energy to fight them! But I'd sure be happy if the docs would recognize the "human" part of this disease. I'm feeling sad and a little beat to have this setback but hopefull it will be over sometime soon.

With every new day there's fresh hope! LOL

CoyoteNV

I recall that when I first started this bc stuff in 2012, I was told that there is a possibility that radiation can complicate the integrity of body tissue enough that post rads reconstruction can be difficult if not impossible.  One PS believes that enough that he recommended to one of his staff members (who went through all of this) that if reconstruction was important to her that she forego radiation and opt for mastectomy, chemo, and reconstruction.  She told me this in a social conversation we had about the impact radiation might have on my already completed reconstruction.  Of course, that implies that the lumpectomy would lead to a situation that required reconstruction.  I guess it is naïve of me, but I assumed that one of the primary reasons for choosing a lumpectomy over a mastectomy was that none of the reconstruction stuff would be necessary.  That certainly doesn't seem to be universally true.  When I was making the lumpectomy/mastectomy decision, the potential complications of a lumpectomy weren't really discussed.  

I'm so sad that these complications have made your recoveries so difficult.  I think many of us deal with annoying lingering side effects (permanent or temporary - who knows), but your situations are way beyond "annoying".  Your toughness and ability (necessity, I guess) to deal with it, humble me.  I so wish it were within my power to do something. You, my sisters, are in my thoughts and prayers. 

WndrWoman

Jean, Great idea for the boxing match. Unfortunately, I think Quiggy and a few others have felt more like they are playing Monkey in the Middle. While the doctors throw blame and responsibility back and forth, the woman is left stuck in the middle.

Quiggy. Hope the latest steps will help. So not what you wanted.

farmerma

Hang in there ladies...there IS an end to this, just not always as soon as we want it to end. I had a follow up with my PS, 4 weeks post-rads. He took some pictures and said, see you in October. UGH! So wish I didn't have to wait so long, but things are changing and will continue to change over the next 6 months, so it's hard to know exactly what "fixing" I'll eventually need. My rads side has definitely shrunk over the past 4 weeks. I still have some hardness toward the inside (where lx was). He said I'll probably lose a lot of that, in other words--it's going to shrink even more. We shall see. I'm just glad I feel good and moving forward. We can all do this!!!

quiggy

Thanks WndrWoman. You nailed it; Monkey in the Middle!

zjrosenthal

Quiggy, hand them each boxing gloves then DUCK! All kidding aside I'd tell them to talk to each other and get back to you. Who cares,what caused it, just fix it. When I was getting mixed messages as to having ALND surgery I asked my MO to talk to my surgeon and let me know what they decided. Love, Jean

quiggy

funny girl zjrosenthal..... LOL

WheelyGirl

It has been very quiet here, hope everyone is okay.  Have a great weekend!

quiggy

wheelygirl, it has been quiet!!

Hopefully it means everyone's doing ok.

PoppyK

Doing fine here! My rads boob is brown... not slightly tan, BROWN, noticeably brown. Should look strange in summer clothes, not to mention swimsuits. :-)

zjrosenthal

Still here. Recovering very slowly. Finished rads 3 weeks ago yesterday. Lots of joint pain and stiffness in my legs. Also very fatigued. Hope that as I start moving it will improve. Love, Jean

Viceroy

I had a period of very dark depression, but feel like I am finally on the other side of it.

My boost area is still tan/brown-ish but all else seems like it is close to being back to normal. I got the ok for hot tubs, sauna, acupuncture, etc from the radiation oncologist at my 1 month checkup last week. I'm hoping to go to some hot springs soon

WheelyGirl

My radiated boob was very brown but has peeled a couple of times and now is just slightly darker than the other.  The skin that peeled was unusually thick and leathery like.  Am still really tired but other than that starting to feel some what normal again.

 

Nancy6540

I'm confused..had my last boost middle of February, then my RO postponed my followup exam until May because she needed a vacation. After that exam she told me everything looked good and to make an appointment for a year from now. This is where I'm confused..why would I need a yearly followup for radiation? Do any of you have to see your RO in a year

farmerma

I just had my 1-month post rads checkup with MO and Surgeon. I see the RO next week. MO told me they would alternate follow-ups. I see MO again in 3 months. If I hadn't met my max out of pocket for the year I'd probably complain and try to avoid all the copays. I'll let them check me out all they want if it doesn't cost me anything!

Nancy6540

I will be seeing the MO frequently but I don't think there is any need to see an RO after the radiation area is healed. Next "year" I will have to pay my $5000 out-of-pocket again before my insurance will pick up the doctors' bills. This year and last the $5K was paid out by February, but next year hopefully I won't have to pay that much for treatment since my Taxol, Radiation and Herceptin will be over!

quiggy

Hi everyone!!!

I passed on the RO follow up, any issues I had she would have denied or said weren't related so no point. Been there, zapped that, she has nothing more to offer.

See the MO every 3- mths and then less as time goes by.

Unfortunately, seeing the BS regular because of the infection. Two weeks back he opened a section and pulled out 5-month old infected stitches. Antibiotics etc, Back next week because not healing, hot to the touch and painful. I'm physically and emotionally worn out. Trying to keep my hopes on some day having this behind me.

Working lots of hours, busy time at work. It's a challenge with energy.

Decided to hold off on Arimidex until I heal. I can't take on any additional issues right now.

Sorry to be a downer. I truly am happy for all of you on your way to normal again. For now, I'll live vicariously through each of you. Hugs to you all.

cbooklvr

Quiggy, I hope you start healing soon now that the infected area has been removed. You have been so strong to make it this far. You will find a way to make it through.

Congrats to all those who have finished. I am almost there. I also have follow up with BS, RO and MO

Cherice

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zjrosenthal

Quiggy, I am praying that your infection will heal soon. You've been through a lot already. You will get through this journey. Love, Jean

quiggy

Thanks Jean and Cherice. I'm looking forward to being done, have high hopes for a new normal!!

Sjacobs146

quiggy, I'll keep you in my prayers for a speedy recovery.

I am to alternate between my BS, MO, and RO seeing one every three months for the next 5 years. After 5 years, I drop the BS and RO, and see only the MO every 6 months until 10'years, when she said that she will kick me out of her practice. I pray to God that she actually does kick me out at some point. They gave me a survivorship pack which details all of the treatment I had so that if I ever move away, or decide to change doctors, I have all the records of my treatment.

I am pretty well healed. The boost area is browner than the rest, but the rest is a normal color. My right Breast does feel a little firmer than my left, that's the only difference I can see now

quiggy

Thanks Sjacobs146

mqt64

Hi everyone! So glad to see so many people doing well. Sadly and frustratingly I am in Quiggy's boat.Though it seems the cavity is getting smaller the tunnel is not after 10 more days of antibiotics. They did cultures today including a different one at my request. Have had major problems with the wound care, things as basic as handwashing and using clean equipment. Friday it appeared they had "borrowed" my packing material and used it on someone else and then put it back in my bag! Appalling! And they can't seem to clear up the infection! In my mind I just want them to open it up, clean it out, take out the necrotic tissue that is still in there and be done with it. I see the NP on Wednesday but not the PS until June 1. Feels like an eternity until then. Quiggy, have they considered hyperbaric treatments for you? I do think if they'd speed up my healing once it is cleaned out. Tolerating the treatments ok with the help of a little Ativan!

Hope you ladies continue to well. Quiggy, I feel your pain and frustration. Hang in there! I had a very depressed weekend but things appear brighter today. Gentle hugs to you.

ladyb1234

Quiggy and MT64, keeping you both in my prayers for a speedy recovery.

WheelyGirl

For anyone who has to take Arimidex, I have been on it since May 4th and have not noticed any real side effects yet.  Knock on wood that it will continue that way.  Maybe not everyone has bad side effects.  MO wants me to take this for 10 years, ugh.

zjrosenthal

MDQ... using your packing material! What? No wonder you have an infection. Sounds like you need to keep meticulous records and see a malpractice lawyer. BTW..Fact: 59% of doctors were in the bottom half of their class in med school. Love, Jean

mqt64

Thanks everyone! for the kind words and prayers. I'll take any help I can get. Jean, you are too funny! What happened to me with the Methylene Blue is fairly rare but not unheard of. I printed off the best PubMed article I have found for their education! I am going to see a lawyer. More than one person has told me I should.The biggest mistake the bs made was to not pursue this in the beginning. That is what the basis for all the rest of my troubles. Depending on what happens in this week I may request a referral too to St. Elsewhere. Anyone remember that TV show? (Really probably Mayo Clinic). By the way, I've been on Arimidex since December and haven't had much trouble, only a few night sweats. My joints have felt a little stiff lately but I think that's because I quit exercising regularly when Livestrong ended. No more RO visits for me.

Love you all and so appreciate your support. Marge

quiggy

mqt64, it's ridiculous that you've had to endure this. I'm so very sorry. Sure sounds like some of your issues could, and should have been prevented.

Based on the data from our little group, your reaction, and mine, are not the "norm" but clearly the issue occurs. Was it meanmom who also had infection?

If the medical community would stop being so full of themselves and just LISTEN to their patients, perhaps issues like ours could be avoided.

I warned the BS about my history of suture rejection, he was the typical ass, poo poo'd the possibility. He should have listened. I'm the one paying the price, he's simply annoyed.

Sorry for the rant ladies. I've lost my sense of humor and it's hard to stay positive.

Jean, thanks for the chuckle. I think mqt64 and I got the bottom of the class. Guess someone had to pick them.

WndrWoman

I thought everyone had folded their tents and left. Wow, was I wrong.

Quiggy you have definitely drawn the short straw and had a long struggle. Your strength will return very soon to deal with these complications because they can't keep a good woman down. Especially with all of us behind you.

Mqt64 what can we say in response to your uncaring care. Horrible. Keep that dry humor going. Thinking of you both.

My RO plans to follow up for 5 years. Every 2 months I will see a doctor - MO, BS and RO alternating. RO said that way someone will check my breasts and any issues regularly.

The moles on my areola I had in January during treatment that puffed up and turned black finally became leathery, cracked and sloughed off recently, about 3 months after last rad. Will check this out with dermatologist in July.

Happy to hear from those recovering and caring hugs to all.

gemmafromlondon

Hoped to find none of you here for good reasons but sadly some of you are still slugging it out. Keep strong and know there are lots of us out there thinking of you and wishing you speedy recovery. As a UK resident I am fascinated at the level of follow up you receive. The RO at the end of my treatment couldn't even be bothered to look at the treated area let alone the still open axial incision - told me one in ten incisions play up and I should see the nurse for dressing. Great. Saw BS five months after surgery; see him again in another 3 months and then, apart from yearly mammography, I am discharged into what is known in this country as Open Access Follow Up = nothing unless I see/feel it! So, whilst for a lot of you your appointments may be money lead from insurance, at least you get to see someone. Keeping my fingers crossed. I changed from Femara to Tamoxifen as I just could not hack the racing heart/unstable blood pressure let alone the joint pain. Still have dreadful hot flashes but that goes with the territory so I shall just soldier on. Thinking of you all.