Lumpectomy Lounge....let's talk!
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KDTheatre, I had only very minor punctation (slight redding of the hair follicles) even after all 33 rads. My skin is not quite as smooth I think but no big deal. I probably should be using Aquaphor on it and don't. Hopefully you'll have no skin issues.
HUGS!
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Blooming, there's a Rigby & Peller store in King of Prussia. The staff is trained to deal with all kinds of breast issues including post-surgical. I went there after the octogenarians at Schwartz' (an ancient lingerie store and breast cancer-supplies boutique that has since gone under) insisted I had been mis-fitted as a 38I and tried to sell me a bunch of 42DDDs & 44DDs that rode up my back nearly to the shoulder blades. The gals at Rigby & Peller can see how your current bra fits and get you into the correct size without even a tape measure. As I said, not cheap, but they know what they're doing.
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I've been away from this board for a little while, but I'm back today because my heart hurts. As most of you know, my mother has been very ill with stage 5/end stage kidney failure for a while now. We 4 girls have been taking turns staying with her since Jan 1. I just came back home again last Sun night. Changing of the guard. Only one sister lives near mother and her job is insecure, so she can't be taking a lot of time off to take care of Mother. One sister lives in Seattle and has been staying 2-3weeks at a time. Another sister in Mississippi has just taken FMLA leave and is with Mother now, so I could come home. We all agree that this is not sustainable but the question is what to do about it.
It is clear to us all that Mother CANNOT be left for more than 1-2 hours. She has become quite forgetful; some days she feeds her pets just fine, the next day she'll feed them 4 times. She often remembers to let the dog out, but forgets to let her back in or even tell us that the dog is out there. She's picking and choosing which meds she takes based on their color and size. Or sometimes, she just gets tired of swallowing pills and tosses the rest in the trash. She is subsisting on a diet of tomato soup, Veggie Straws, and Peach Tea. If she is not prompted to eat, she forgets or says she's not hungry. She uses her oxygen tubing to play with the cat--consequently, the cat is biting and tearing up the oxygen tubing with great frequency. She won't use her oxygen in public because it makes her look old (she's 82; she's looked old for 15 years.) She is incapable of managing her finances--indeed, she has not asked ONCE about paying any bills in the past 2 months. The whole situation is quite sad.
Today my sister B took Mother to see a neurologist because Mother has become very aware that she is forgetting things and it bothers her a lot. Apparently the neurologist told her flat out that she needs to move to assisted living NOW. She's got some tests coming up, but we girls are breathing some sighs of relief at getting this step forward. Of course, the doctor cannot force her to go into assisted living and mother is still considered legally competent, even though we all know she is not. Thankfully, she has made two of my sisters durable powers of attorney, so those have been activated and the bills are being paid. Sister P is with her now and will try to talk with Mother about going voluntarily to memory care but that will take time (she is already too far gone for assisted living.) In the meantime, Mother is ranting and raving about how this is all MY fault, how I've been trying to put her in a home for years, etc. All untrue and my siblings know this. My mother has both loved and hated me for many years.
Ugh. I just want to go crawl under a bridge for a few days. I just feel paralyzed.
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Poodles, the difference now is that the doctor who is most qualified to determine her cognitive ability believes that your mom is no longer capable of living at home. This is important because the neuro’s opinion will carry conclusive weight in any conservatorship proceedings. It would not change your mom’s feelings about you (for now), but it would give you and all your siblings the peace of mind that she would finally be getting the care she needs—and that you are doing right by her.
Hugs.
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I wish we could get conservatorship without having to put her before a judge. She will feel so betrayed. I hate this for her.
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Remember that your mother’s body and mind have already begun to irreversibly betray her. You will be protecting her as best you (or anyone) can from the consequences.
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Poodles: I have nothing to add, from a practical standpoint, that ChiSandy has not said already....all I have is a sympathetic ear and heart, though I hope that helps. (Alzheimer's runs in my husband's family, and I've seen others in my community wrestle with other forms of dementia.)
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Poodles, it's awful. Sandy has a great legal mind and I know you're listening. Nothing is going to help make your mother "love" you right now. Probably not ever. It's the disease talking. Easy to say but awful to live with. My DH's mother had Alzheimer's and she was always asking why he never visited her (he did regularly) and how often his oldest (and perfect) brother visited (which he also did). It hurt him so much even though he knew she was gone mentally. I'm not sure he ever recovered from those depressed feelings. I hope you can. I offer you hugs and support while you get your mother to memory care ASAP. You and your sisters are doing so much. There's no way this can continue. Get it done now. And those poor pets. Only good thing is your mother doesn't realize you've taken over her finances. Nothing else is good. Just get her safe. And we're here to listen to you - whether crying, raging or just accepting. We love you. I'm sorry.
HUGS!
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~IHGJAnn49~
When you say 'zingers' are you referring to the searing, stabbing pain that catches you off guard, causing you to grab the hurting breast and gasp? I am 10 months out of radiation and I still have an occasional 'zinger' moment. My RO told me 2 years before I can expect complete healing.
~KDTheatre~
I had 35 radiation treatments between March and May of last year. I never had any skin issues except for redness and toward the end of treatment my breast was sore to touch. My RO and his staff had me start using Aquaphor right away. I put a layer on after every treatment (you can't have anything on your breast when they radiate). I also put baby cornstarch on the underside of my breast when they started the boosts. I didn't get a single blister or tear. I treated my breast like a delicate new baby!
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Poodles, sending hugs!
Blooming, welcome!
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I appreciate everyone's kindness. There is just no easy way to get through this kind of thing. I am so grateful that my 4 siblings and I are working together. This kind of situation can tear a family apart.
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Poodles, you are doing the best you can, much love and hugs your way. The dementia that sets in with chronic kidney issues, coupled with the other issues she has going on are in control of her thoughts and actions, not her. Remember, once you were her baby that she loved with all her heart, and hold onto the good memories as much as you can. Hugs, hugs, hugs, I know it is hurtful to you right now.
There are no words. Just know there are people here who know your heart is in the right place, and you are supported and loved.
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Mustlovepoodles - I am not a lawyer but if the neurologist says she needs memory care and your sisters are all in agreement, just do it, particularly if she has already given someone power of attorney (hopefully medical power too). I placed my mother in memory care when she was 92. She had been in independent living not far from us but she was wandering (and it was Aug. in Phoenix) and frequently disoriented. At the time I did it, she had had brief stay in the hospital (her electrolytes were way off and in retrospect we wonder what she had or hadn't been eating) and I didn't let her go back to her independent living apartment. Having a hospital stay first MAY also help you with the bills.
For several months, Mom said to anyone who would listen that "my daughters put me here" but eventually admitted that she wasn't able to live alone. Was it easy to do - no! It's hard to watch your mother become your child. You and your sisters obviously have a full plate but she will be safe and someone will monitor her oxygen besides the cat.
Sounds like all of you are far apart which will make the search for a place harder. There are agencies who will help you sort through the options - they get paid but the provider and not by you - and will take into account her needed level of care and find a place that will work for you financially. There is a national chain that Joan Ludlam advertised on TV occasionally - "A place for Mom" I think. But you can google and find the type of referral agency I am thinking of.
Basically memory care facilities will either be "large" institutional types or group homes. I chose the former as Mom needed the stimulation and activities. Bingo was her favorite and they served popcorn while they played. They also took the higher functioning folks on field trips - out to lunch, to the zoo, etc. Mom had her own room (which we furnished with her things) and bath. Some places have doubles. If you are looking for the activities, make certain that they are available to memory care clients and not just those in independent living.
Group homes are obviously smaller, staff will become more familiar to the client and they are probably more invested in them. At the end, that would have been the right decision for her but we chose not to move her mid-decline. Either type of facility will work with Hospice when you need that.
Not an easy challenge to add to your bc, but there are resources out there for you and you can yell at all of us when you need to. Good luck.
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Poodles, we are glad we can support you. You have given so much to us, it's nice to "pay back." ItalyChick is right - remember the mother of your younger and growing up years, not the one now when she is not herself. There ARE no words.
HUGS!
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Poodles....hugs & prayers
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Saw the medical oncologist today. She said that she agrees with my not wanting to do chemo because the chance of metastasis is zero or close to it and therefore the oncotype test is VERY unlikely to be more than a minimal value. Medicare would pay for it but there's really no reason to waste money on an unnecessary test. I will however, see the radiation oncologist on Tuesday. I still have very mixed feelings about it because it IS standard for younger women and she suggested that if I have a life expectancy of over 10 years, then I should do it. Well, how do *I* know what my life expectancy is?! It would make me 79, but many people live into their 80s and 90s. Will I? Who knows?!
So anyway, it's on my mind, and I won't make the decision until after Tuesday.
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Natsera, good news that you don't need chemo. I didn't have any trouble with radiation. Just some itching & fatigue. I wanted to do what I could to keep it from reoccurring. See what the RO recommends.
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Natsera- I thought the oncotype test was part of this whole BC journey. I know so little! I am reminded every time I come to this site! Maybe I am choosing to stay in the dark for now. I met my MO on Tuesday. No chemo for me. I have my prescription of tamoxifen. I picked it up yesterday. I plan on starting it today after I read all my hand outs. We (my girl and I) delivered Meals on Wheels yesterday and it was 4 degrees with the wind chill. I had several other errands I needed to do which is our typical Wednesday routine. I was over the wind and colds I just laid the prescription on the counter. I will focus on that later today. I meet with the RO next Tuesday to! As for life expectancy. ..one grandmother lived to be 109 and she still had a sharp mind. One aunt was 100, 2 other aunts over 90. My Dad is 86 and my Mom is 83. They live in a house 2 times the size of mine and it site on 28 acres. Which they maintain by themselves. My sister died at 51. Who knows how long we will.live?!?!
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Poodles, I am so sorry about all of the heartache you have regarding your mom. My sister and mom both went through Alzheimers. My mom initially didn't want to have anything to do with her husband. I got called frequently to go calm her down. Eventually, after she disappeared for a week, she calmed down. It was a couple years of intermittent combativeness and accusations. My sister turned violent and had to be placed in a facility. Mom is still home though she's dying.
My friends mom was placed in a small home based facility and was very happy there. Her husband eventually moved in as well.
My dad spent the last two years of his life in a nursing home because he had no money. It was heartbreaking and I always felt like I betrayed him.
All of this to say please don't take the personality change personally. Your mom loves you and you are a good daughter. Maybe a social worker can help recommend some places.
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Neustra, You are right - no one knows how much time they have. But we can make choices that MAY give us more or less. If treatment ups the probability that I will still be here in 10 years, I chose to try it. On the other hand, when the treatment seems worse than death, I will choose to terminate it. I also take what I consider "quality of life" into account in my decisions. My friend, Anne, diagnosed with stage 4 in 2012, lived a very full 4 years - traveling, time with grandchildren etc. She drank her wine and had her chocolate. My brother-in-law was diagnosed about the same time with a esophageal cancer and lived a miserable 3 years. He was so tied to his health that he seldom even left the house except to go to the doctor.
There are tables out there which can help you calculate your life expectancy at your current age. Some are sophisticated enough to add in other factors like your health status, family history, etc. Ironically, every year you live adds to your numerical life expectancy because the "sicker" have dropped out. My sister, an actuary, did some fairly sophisticated models for their financial planning. Basically, my chart said that age 71, I should expect to live an additional 15 years. Even before bc, I would have said it was at least that - my mother died at 96 and her mother was 93. You can google to find these estimates or call an insurance agent and they would love to tell you. CDC also has data but I got overwhelmed trying find age specific rates in their very detailed rate. This is a long answer for me to say that at age 71, I chose radiation and chemo even though I was stage 1. I have no other health issues and am supported by friends and family. I believe that I'm not done yet.
I know you have shared that at other times that you find making these decision very hard. And we each have to walk our own path. Talk to your doctors, your significant others, and maybe even a counselor who could help you clarify your issues.
Remember the right answer is the one that is right for YOU, not any of the rest of us.
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I feel like such a baby. Woke up crying my eyes out. A few days ago I got an email from my MO saying my oncodx came back at 20, and the benefit of chemo would be 0 to 4 percent. I was relieved since the chemo thing seemed to be a no brainer. Not enough benefit to justify the possible risks and side effects. But yesterday his office called and he wants me to come in for a face to face meeting instead of discussing by phone. So I am Bracing myself for some less than happy news. I am jumping to the conclusion that the Tumor Board discussed my case yesterday (Wednesday is their weekly meeting day) and are recommending chemo. I have a tendency to worry things to death. So another two hour drive for another dreaded appointment. I know many people say chemo is "doable" but for some reason, I feel like it would be the beginning of a downward trend for me. Maybe not rational, but that is how I feel. Being single makes me feel isolated and worried about how I will cope if things go downhill. My husband died of brain cancer 7 years ago and memories of that horrible time keep coming back. He had me to hold onto. I wake up in the night and there is no one to tell me it will be all right. Also feel abandoned by one of my sisters and that is very painful. Sorry to be on such a negative roll.
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Siciliana, My heart aches for you. It has to be awful to feel so alone. I have a friend whose husband died of brain cancer (she's in Australia) and it is a terrible thing to experience. Reach out to the ladies here. There are BCO gals somewhat near you in western Washington. Perhaps a get-together with them would help you feel less alone. Please reach out to your cancer center. There may be programs, NPs or others who can also help, especially if chemo does seem to be in your future. Let your friends help you out. Sometimes it's hard to accept that you do need it - this is not the time to try to be Super Woman.
When you do see your MO, if chemo is recommended, make sure you get all the information from him about why he thinks you should add it to your treatment plan: what are the benefits, what are the negatives. Does your age matter? Write all those questions down so you don't forget them - it is easy to do that when hit with too much information.
Good luck! We're here for you.
HUGS!
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Siciliana, I don't know your particular loneliness and I'm very sorry you're in this state. Breast cancer is hard enough when you have the support of a loving partner, but to go it alone must be really tough. Having nursed your husband through brain cancer has got to be bringing up a lot of bad memories and fear in you.
Might I suggest that you may be suffering some PTSD? It is very common in cancer patients & families and others who go through life-changing, potentially life-threatening medical experiences. My husband had it after going through open heart surgery and nearly dying. I had it after a terrible rollover wreck in 2010; it reappears after my BMX went so horribly wrong. There is help for you.
Perhaps you can call your MOs office and see if they have a nurse navigator. She could put you in touch with a doctor or psychologist; talk therapy may help, but medication makes the experience more tolerable. I was on medication for about 5 months last year, until I felt like I got my feet back under me.
Lastly, I want to encourage you in your self-talk. Most of us with early-stage breast cancer go on to thrive, once the treatment is over. Chemo, if you need it, is not the end of the world. I was very tired and I had a few hiccups in the road, but I never threw up. I looked great, actually, despite wearing a wig (or maybe BECAUSE of the wig, LOL.) While recurrence and metastisis is always a possibility, in early-stage breast cancer it's not a probability. There is a difference.
I wish you the best when you meet with your doctor. Don't forget to ask about taking something to make this experience easier to bear.
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Poodles, so very sorry about your mom and all that entails. I was there before and it is just an emotional roller coaster!
Siciliana, I was where you are last summer. I started out with an "easy" diagnosis, lumpectomy followed by radiation. My oncotype was also 20, but I had decided not to do chemo as it just wasn't worth it. Then my MO requested specific genomic test, Prosignia, and it came back high risk for recurrence.
Please remember that everyone's cancer and treatments are unique, but SHOULD it be recommended you do chemo and YOU decide that's the path you want, know that it is all doable, certainly not fun or what you would choose, but definitely not as bad as I had concocted in my head. Chemo has come so far in dealing with side effects, should you need it, you can handle it. Just ask tons of questions, and as others have suggested, talk to doctors and those closest to you and listen to your gut. We're all here for you any time you need help, and between us all, I bet the majority of experiences are represented. Hang in there and remember... you're entitled to cry, vent, or anything else! We know how it feels.
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Siciliana, my heart goes out to you. While my situation is not the same as yours, I can relate to the emotional toll it takes on you as your and your Drs determine your treatment plan. I met with a breast navigator at the beginning when I was diagnosed and then when I finished tx, I was offered post BC support as well. I too encourage you as Poodles suggested, to see if there is a breast navigator available to help you. Meanwhile, we are here for you. Hugs!
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Thank you all for your kind words. You are just what I needed and I truly am blessed. My meeting with my oncologist went well. He showed me my oncodx report and explained it in great detail. He said the benefit of chemotherapy would be negligible, at only 0 to 2 percent. So no chemo for me! I will be doing rads and anti-hormonal therapy.
Yes, I do think I have some PTSD. I have a very compassionate therapist who is helping me work through some of this. And I am also blessed with good friends, one of whom volunteered to drive me to the appointment and offer me support during the appointment with the MO.
Thanks again to all of you. I wish you a good night and a better tomorrow.
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>>I wish you a good night and a better tomorrow.<<
Siciliana, what a wonderful salutation! Glad you get to skip chemo. I sailed through rads and anti-hormonal therapy is doable thus far—will have to address the SEs of lowered metabolism by changing my diet and increasing exercise, bone-weakening by taking 1200 mg. of calcium (plus mag. and D3) daily and a Prolia treatment twice a year, and “warm spells” by sleeping in a summer nightie and running the ceiling fan. So far, so good.
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Siciliana, YAY no chemo. Glad you're MO explained it to you in detail to ease your mind. Other than fatigue, I had no issues during rads & no noticeable side effects so far from Tamoxifen. Also glad you have someone available to help you. Hopefully you can now relax some now that you have your treatment plan. Hugs!
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Thanks so much for all the information and advice about a) full-figure bras for post-surgery, b) how to organize records/ and documents re treatment, and c) preparing for surgery. I appreciate this. I'm following through on all this.
Among many practical things I've learned: ChiSandy, I had no idea that there were still lingerie stores that did fitting. I've made an appointment for fitting at Rigby & Peller.
Thanks so much.
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Any advice about deciding between lumpectomy and mastectomy?
I'm schx for lumpectomy (plus removal of more suspicious growths) and sentinel node biopsy. I was diagnosed early point, with MRI screening. Biopsies so far, have shown one IDC malignancy on left that is small. Other suspicious growths biopsied subsequently have been OK. Still, they're different types of growths on left that are suspicious and others on right (that do not look as menacing). I'm beginning to have second thoughts about whether long-term I'd be better off with mastectomy. Do not have BRCA gene, but family history of breast cancer. I'm trying to make sure I'd be able to have the other treatments that help minimize risk. I have full-size, pendulum shaped breasts but RO said can have radiation if very careful with skin. The IDC is ER+/PR+ so hormone therapy would be in order, but I have some concern about some side effects. Also, working on healthier living.
So...Have any others with option for lumpectomy, decided to have mastectomy? I realize the many advantages of breast-conserving surgery. I'm wondering whether any have found that mastectomy seemed to be right for their situation? Any advice on thinking this through?
Also wondering if anyone else with full-size breasts has had breast reduction before radiation, to try to make it easier/more effective?
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