Lumpectomy Lounge....let's talk!
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Poodles,
Yeah, the first visit, they left me in the room for 2.5 hours, and I finally went out and asked when she was coming in....they forgot about me completely...that really had me turned off from the get go, but I thought, mistakes happen, give her a chance. The second visit, she never looked up from her computer screen. I know I need a second opinion. It doesn't matter who thinks she's the best, I don't. I'm not at all happy with the way my treatment has gone, so I need to do something about it. I will be making calls first thing tomorrow.
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Dara, yes, that's going to be my focus, finding someone familiar with both the cancer and lupus, and I'm hoping we can go camping before school starts! That's something we both really enjoy.
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Kacey, sounds like you have figured out what to do next - find another MO. You'll find one that you like AND trust! I hated moving (which I did in June, coming from Michigan). I loved ALL my doctors: MO, RO, BS, and PCP. Then to find new ones. I lucked out with my new MO and I really like him. My new PCP - well, haven't decided yet. I don't hate him. Just didn't feel an instant rapport.
As Dara pointed out, you were right to go "lesser" with your lumpectomy. You can always do a mastectomy down the road if necessary but you can't put your breast back once you do that.
Your granddaughter is lucky you are able to care for her and congrats on the finalizing of the adoption! I'm sure you are ready for her to be back in school! Definitely plan on a camping trip! It will do you both good.
HUGS!
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Kacey, the bigger question is why your BS and MO didn't notice the lupus in your medical history. The BS should have known radiation was not an option and therefore, neither was lumpectomy. Lupus is an autoimmune disease (your immune system is overly sensitive and views your own tissues as invaders), so--especially since your immunosuppressant meds are already discontinued--chemo may actually help lupus even as it is tougher on other aspects of your body. (One older-generation chemo drug, methotrexate, is commonly used to treat other autoimmune diseases like rheumatoid arthritis and scleroderma). Ask your MO why she refuses to allow chemo in your case--and demand the specifics. Otherwise, get a second opinion and see if you can go elsewhere. You're young enough at 49, have a 4-yr-old special needs grandchild who will need your care for a long time, and at 3 cm your tumor is only relatively small, so you need more rigorous treatment than we senior citizens here--you not only have a longer future to protect but bc is more aggressive in younger women--even the recently-postmenopausal. The reason you need antihormonals is that your tumor is so strongly ER/PR+ and even with no ovaries at all, our adrenal glands and fat cells make an androgen that the enzyme aromatase (made by the liver) converts to estrogen. Tamoxifen has no effect on aromatase, and instead blocks the tumor cells' hormone receptors' access to estrogen. (Think of it as aromatase inhibitors spoiling the food in your fridge vs. tamoxifen putting a padlock & chain on the refrigerator door). It does strengthen bone somewhat, but carries blood clot and endometrial cancer risks (retroperineal cancer if you have no uterus) that aromatase inhibitors don't. Aromatase inhibitors weaken bones and cause joint pains that tamoxifen may not, but they are more effective in preventing recurrence. But both classes of drugs cause hot flashes and weight gain.
However, your little granddaughter needs you around for a long time, no matter how lousy the drugs may make you feel; you'd be in better shape to care for and love her, alive and hurting, than if gone before your time.
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ChiSandy, The BS was aware of the Lupus, and I never saw the MO until after surgery. I have been on Methotrexate for my Lupus, it didn't work for me. I tried to have a discussion with her about the chemo, she shut me up real quick and said it's not an option. It's time to move on. I am making calls tomorrow for a new MO. I can't take Tamoxifen because I have a clotting disorder. That's how she came to put me on the Anastrozole. I already have terrible joint pain from the Lupus, I just hope that doesn't make it worse. I think she's forgetting that I have a child to raise, and I want to attack this from every angle I possibly can, so while she may be ok with the whole we'll just watch it approach, I certainly am not.
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Peggy, Thank you, it's been a very long process but I'm lucky to have her...she's a great kid! And I'm glad you were able to find docs after your move!
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Kacey, I'm sure it has been a long and, likely, painful process. I have friends my age (early 70s) who are raising their 12 year old grandson whom they also adopted. You absolutely do what you have to do and because you want to and not just because it is the right thing to do. I'm sure your love, caring and stability will help make your granddaughter happier! There are many ladies here caring for loved ones under extremely challenging circumstances, so we really do understand what you are going through. And we're with you!
BTW, with your medical issues, I'm surprised (and I'll bet you are) that the MO wasn't brought in prior to your surgery. ARGH!
HUGS!
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Thank you for the replies everyone
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Hi just had my Lumpectomy done Thursday afternoon and stayed over night and was discharged the next morning. All was sore as to be expected but this morning I woke up to what sounds like a half filled water balloon swishing around in my right breast.
I had asked for a drain, before my surgery because a friend of mine said she had to have one after the surgery, so why not put one in just in case?. I asked Dr. said no, we do not need that.
So I called Telehealth and she asks me some questions and suggests I should go to the ER. It is swollen and red below the site. About the size of a long toonie and slightly warmer then the other side.
But I don't have a fever and other wise just tired.
Just thought I would see if anyone had any thouhjys or opintions. Tjanks Kathryn
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It's most likely a seroma. You had a big chunk cut out of your breast, leaving a large cavity--and nature abhors a vacuum. (So do my cats). As with so many excisional surgeries, the cavity (or sometimes the space between dermis & underlying tissue) fills with fluid. Think of it as a big blister (or of a blister as a min-seroma). They are almost never drained or aspirated because of the very high likelihood of infection, and because if done too soon they usually fill back up). Even if not infected, they are usually warmer than the opposite breast and remain so for quite some time. (I'm 11 months post-op and my tumor-cavity seroma, while much smaller, is still slightly warmer). The sloshing is characteristic, especially in a smaller breast. Mine never sloshed audibly as my breast is very large and fatty, which muffled the sloshing. Drains are almost never inserted after lumpectomies because they are a nuisance to care for--and with a mastectomy, because of the amount of tissue removed, a much larger seroma would form which would be even more uncomfortable than the drains. Trust me, a drain would be more bothersome, and prone to infection, than a seroma.
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Welcome back Ayr1016. Kacey , I have an 18 year old special needs son. That's why I had a unilateral mastectomy after my lumpectomy. I needed to minimize recovery. I am glad you decided a second opinion is in order.
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Dara, for my dry mouth symptoms, I use Thera-breath toothpaste and rinse (Biotene has parabens, I was totally shocked to find out). The toothpaste doesn't foam, which is a little weird, but the ingredients that cause foaming also dry out the mouth. I also used medActive oral relief lozenges. I tried a couple other lozenges, but hated the taste, and these come in orange. When it first got bad, I used the rinse my mo recommended which is salt and baking soda, but after a few days of the toothpaste and rinse, I really didn't need it anymore, except occasionally. Once I found the lozenges, I stopped the salt rinse altogether. My BILdid slushies during chemo, so I tried shakes (the slushies were too sweet), and the one time I drank OJ instead, my taste was much more effected and my mouth more sore
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Oddly enough, I had no migraines during chemo.
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Kathryn, I am in Oakville as well. Had my lumpectomy done the first week the new hospital was open. I did not get any drains and was fine. It was thought that my cancer was 1 cm and it was 1.8 cm when it was removed. Do you know yet how large yours was? I know someone that had a much larger tumor removed and needed drains but she did not like having them at all. I was glad I didn't have to go through that.
My surgeon said to use my arm and not to listen to anyone that's tells me not to. I was back at work in a week which requires a lot of arm movement and lifting. I think in the end it help me have full range with my arm in no time.
I am 3 weeks out from rads and get a lot of stabbing pains in my breast. Is this normal? They really hurt and happen quite a bit through the day.I don't have any upcoming Drs appt to ask. I am hoping it is the inside healing up from the rads. Hope it doesn't last long!
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I was very surprised when, 6 months after rads, my dermatologist noticed some residual pinkness and fibrosis over the radiated area, and prescribed a steroid ointment (even though I was seeing her for something totally unrelated). She explained that irradiated tissue below the skin continues to go through changes for quite some time afterwards. I wouldn’t be surprised if that’s what those pains might be, as well as nerve endings continuing to reconnect months after surgery. My followup mammo confirmed that mine weren't tumor activity. (The ointment plus wearing a Swell Spot pad in a sleep bra caused my seroma to shrink and the fibrosis to soften appreciably--I still use the pad & ointment every few weeks or so, probably should use the ointment once or twice a week according to my derm).
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Karen, I had the same stabbing pains in my tumor bed during rads. You should always mention any pain to your team to be on the safe side.
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Kathryn56 - I had the same as you .. shortly after my lumpectomy .. my breast was so swollen and sloshy - I called the surgeon and they said it would be ok as the breast absorbs the fluid and it would clear up... well when it was as swollen as it could be the incision burst while I was sleeping and all the fluid released... it was a mess - but sure felt better... I went on an antibiotic so I had no infection however, my incision slowly leaked for the next 2 years... a few months ago my BS went in and cleaned everything up and closed it up again... I did then develop a seroma but it has been slowly shrinking and so far so good..
I wish for your sake, they would drain it so that what happened to me (burst incision) won't happen to you.
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Kathryn--when I went in for my first post-op visit my BS said my hooter looked better than he'd expected, meaning not as misshapen. When he looked at it with an ultrasound there was indeed a huge area of fluid. He drained it right there and it was not a big deal at all.
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Just stopping by to say hi to all the new faces and update on my mother--
Mother came home from the hospital last Friday, after 7 days in. Her discharge diagnosis is Acute Kidney Failure, so she's on a new diet--low sodium, low potassium, low phosphorus. Pretty much all she can eat is air. Her kidney function tests are slowly heading toward normal--she had a blood test this morning ,so we don't know those numbers yet, but she'll have a follow-up test on Thurs. She and I have gone through her pantry and all of her cabinets to get out anything that is high in sodium or potassium (which was 3 large grocery bags of processed food!) I took her to the store yesterday and we practiced reading nutrition labels, and bought some "safe" foods.
I'm concerned because she really hasn't been eating well--she has lost 15-lbs since she moved into the new apt in Dec. She tends to just snack-- bowl of cereal for breakfast, 3-4 peanut butter crackers and a piece of fruit for lunch, soup and saltine crackers for supper. She often has a sweet snack between meals and before bedtime. We bought some no-salt-added canned foods--she won't eat frozen food. Her protein choices are severely limited--beans are loaded with potassium, as are all potatoes; she doesn't like chicken or seafood; all pork, cold cuts, sausages, bacon, and most cheese is high in sodium. She doesn't like salad and she doesn't cook fresh food. I actually took her to Waffle House this morning so she could get a couple of scrambled eggs, no-salt grits, and 1 piece of bacon, just to get her to eat!
Of course, now she's passed out asleep in the recliner. She has no energy at all; of course, spending 7 days in the hospital, in acute kidney failure will do it. Mother is very aggravated with herself--she really expects to be able to hop right back into the saddle immediately. It doesn't help that she's struggling with incontinence--she had two cystoscopies while in the hospital, so that dilated her urethra and the sphincter muscle that keeps it closed. I have bought her some bed pads and some pads for her recliner and her car seat. She's very worried about money and the incontinence pads and pull-ups are expensive. I may have to hit up my siblings to send her some packages via Amazon.
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Thanks Sandy and Molly. I go for Hercepton tomorrow so will ask when my next appt with my MO is. I believe it should be after my heart scan in September. I will ask the nurses about the pain tomorrow as well. Our heatwave is over, now we have a rain weather alert for tomorrow.
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Poodles, How depressing. And what a challenging diagnosis and diet. There is low sodium peanut butter, BTW. I would worry that with all those "low" restrictions that your mother's BP is going to be dangerously low. I don't know anything about kidneys but I do about low BP. I bought Depends for DH for a couple years. Stocking up on sales. It's possible that Amazon does have better pricing. Would pads work better than pull up pants? I'm sorry things are so difficult.
HUGS!
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Poodles, how super frustrating with your mom. I understand it's hard for a single person to cook for herself, and it sounds like she's about as finicky as a couple of my grandsons! And of course pre-fixed foods all have so much sodium, etc. Do they have Meals on Wheels in her area? There might be something even a couple of times a week that could be delivered so that she could at least get some hot protein or vegetables. We set it up for my MIL, but found she didn't care for the seasoning, the textures, or something else.
1Step, thanks for the suggestions. I had no idea Biotene has parabens. I've tried to get rid of them completely. My MO today gave me the "magic mouthwash" compound as well as the one for thrush. Seems I'm lucky enough to have both:-) I tried the magic one when I got home and immediately started gagging and had to spit it out! It was a cross between milk of magnesia and arsenic! It did totally numb my mouth and lips though! MO today was very pleased that my white count has already rebounded in just 7 days. Not sure if I'm imagining that the crown of my head is tingling, but am almost looking forward to not worrying about fussing with hair, especially with the heat we're having. Several days of 104+
IAmNancy, can't believe your story! What a nightmare with the incision draining for 2 years. Hope everyone else are doing OK.
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Peggy and Dara, I'm not really worried about her blood pressure being low. if anything, I'm worried about it being high, as that is a common consequence of kidney disease. I see mother really trying to stick with this diet--it's only been about 10 days--but I can already tell that she's not going to be successful with it. It's a pretty bland diet and she doesn't want to be on it. Heck, I've been on it for only 3 days and I'm dying for chips and a hot dog! I'm pretty sure that when I leave tomorrow, mother is gonna be headed to the nearest BBQ joint.
Mother is depressed, for one thing. This move from her big home to an apt has been very difficult. She has not really made friends here or joined in the life of the community, although several ladies came out to speak to her when I brought her home. Mother is very depressed about the state of her health, although I don't think she fully grasps the seriousness of this latest illness. She has other health issues that worry her more (diabetes, atrial fib, 3 TIAs), and now kidney dysfunction. I don't blame her one bit for feeling depressed--it's a lot for anyone to take in, let alone an 82 year old widow lady. I will try to find her a geriatric psychologist or LCSW near her home, but I highly doubt she will see him/her. I really feel bad that I can't be with her often enough, maybe one long weekend a month. I have a sister who lives near Mother and she helps her out sometimes. The other 3 siblings live far away and can only be there once a year or so.
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Poodles, all you can do is point out the consequences of not following her diet. There are certainly spices and salt substitutes that she can use to add flavor. Would the kidney foundation have meal suggestions? I can totally understand her being depressed. Who wouldn't be? As I said earlier, if she understands what will happen if she doesn't do what she's supposed to and even find a way to corral her depression (psychologist e.g.), then there's not a whole lot you can do. It is too bad you are so far away and no one else really can help out. A no win situation for you. I've got a nice shoulder to lean on (or cry on) and ears that listen.
HUGS!
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Hi Everyone, Just a little update... My BS called today. ( I emailed him yesterday) He's actually pretty great! He's upset that RO scared the hell out of me and is going to speak with her. He said he has done too many lumpectomies to count on Lupus patients and all have had radiation with no problem at all. He said never would have done the surgery if he wasn't confident I could have it. Anyway, I also talked to my Rheumatologist and she agreed that it's perfectly fine because I have no rashes or skin problems at all. I also have an appt. scheduled Wednesday with an MO for a 2nd opinion! I'm feeling much better about things today! I'll let you all know how things go.
Dara, I have the magic mouthwash, I get mouth sores (Lupus) and you're right- it sucks! but it does numb it pretty good!
Poodles, meals on wheels may not work, you never know who's cooking or what you're getting. no guarantees with that and really no way to know for sure. I was a home health aide for 5 years, and a lot of my clients had meals on wheels. I also knew people who delivered, and cooked. I wouldn't suggest it with your Mom's strict diet.
Peggy, thanks for the support!
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Dara, I have no idea of what's in your magic mouthwash. HOWEVER, for canker sores (and scratches and sunburns and wounds), I use ST-37 antiseptic. The taste is fine and boy does it numb the mouth. I buy it on Amazon. It's a really old-fashioned medicine. You might consider it. ST-37
HUGS!
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poodles, please get her to take it seriously. I just returned from Chicago after watching my mom take a week to die from kidney failure. It was the worst thing I have ever gone through. She also had adult onset diabetes and wouldn't stay away from things like potato chips. She always told me that all she had left in life was food and tv, but it was a brutal way to go. And she was depressed too. I'm still reeling in shock and want to pick up the phone to call her
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Italychick, you have my condolences. I have seen a few people die from kidney failure and it really is a hard way to go. My mother is also an RN and she is well aware of the consequences of not following her diet. But she resists mightily.
Kacey, I had the same thought. Mother is so picky and her diet so specialized that I dont think Meals on Wheels would work for her. I wish my sister could cook for her, but she only makes processed box food or orders pizza. She wouldn't know a vegetable from a frog.
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Lol...that's funny! Processed food is the one thing you don't want her to eat!
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((((Poodles)))) Theresa, I am sorry about your mom.
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