Lumpectomy Lounge....let's talk!
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Alice, hugs and prayers for you--what a nasty surprise. Please keep us updated as we do care about how you are doing!! Ask your onc if your situation will be/has been discussed at a "tumor board". Sounds like that would be very helpful in your situation.
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Sorry, CindyNY, didn't see your post. Thanks. The diagnoses aren't freaking me out, just the lack of control over what comes next. To think I hated Event Planning for the short time I did it, but now my mind automatically goes to that obsessive planning mode again!
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Alice, has the urologist done a biopsy or PET scan to confirm your kidney tumor is indeed cancer? Tumors can be "benign" in the sense that they're not cancer (and therefore can't metastasize), but can be problematic if they keep growing and threaten adjacent structures & organs. Good idea to try & shrink it so it can be removed, regardless of tumor biology. Do you have a nurse-navigator you can consult?
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ChiSandy, my MO said she could tell from the contrast CT that it's cancerous. I hope that the urologist agrees so I don't need more tests at this point; I expect to start glowing in the dark any night now. Apparently cancerous and non-cancerous kidney growths are treated similarly anyway, shrink then excise - unless there is some urgent reason to remove it sooner. I seem to be haunted by my parents' medical issues this year - Mom had BC when she was 85 (a little more straightforward than mine, luckily, because she had to drive to her radiation appointments in a different town every day for five weeks), and Dad had KC at 89, found when testing his ripe abdominal aneurysm before surgery. They just grabbed the kidney out in his case, and he did fine with just one. Not that I want to lose a kidney at my age; but that seems a solution of last resort in most cases. From the small amount of reading I've done, and what the MO said, a biopsy isn't usually done on kidneys if the growth needs to be removed anyway. At least some of my lower back achiness is explained. I have arthritis nearly everywhere, and had lower back surgery twenty years ago, so I just assumed it was standard annoying issues. And fed it with NSAIDs, on which those cancers feast. 😣
I really need to track down which office has the nurse navigator to help coordinate this confusion. If I can outsource that, it will alleviate some unnecessary stress.
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My MO said that they don’t biopsy kidney tumors because that’s really the only cancer that can spread from the biopsy procedure, they just remove it and then test it. It’s hard to deal with two occurrences of cancer. I can’t imagine it. You are in my thoughts.
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Shockedat48, yes, that's something the MO brought up, thanks for reminding me. I was getting a little foggy-minded by that point after talk of margins and node specks and other unpleasantries. And thank you for the supportive thoughts.
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Alice, hang in there--we're "in your pocket" for all your scans, procedures & treatments. They don't always need to take the kidney--but if they do, remember there are tens of thousands of people walking around with a single kidney after having donated the other one. What's weird is that kidney cancer seems to come in clusters--all three of the cardiologists plus a couple of internists at Bob's chief rival practice group developed kidney cancer--must be the water.They're all in remission.
First I've heard about NSAIDs being carcinogenic--I know that they affect the upper GI system, and erosive esophagitis can become esophageal cancer. But that's pretty remote. They--as do any painkillers--can do a number on the kidneys & liver. Natch, I rely on an NSAID to supplement Tylenol during the day so I needn't take Tylenol #3 except to get to sleep.
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It seems the options might be removing the mass, removing the mass + part of kidney, or removing the whole kidney, just based on what I've read. I guess the first two might involve pre-surgery shrinking. I'll find out tomorrow what's planned.
The left side of my body must hate me. In just the last eight years, hip replacement, egg-sized lipoma under my jaw removed a few years ago, MOHS surgery on a low-grade but messy basal cell carcinoma on my face (incision from bridge of my nose to corner of my mouth, plus a shallow semi-circle of skin removed the length of it to allow for a smooth scar - that derm surgeon was so good that it was barely visible in just a few weeks), then the left BC, now Sidney the Kidney! Named because it is probably as ugly as Sidney Greenstreet, but if the whole kidney has to go, it could be a Sidney Carton "far, far better thing" noble sacrifice! My left boob is my name here, Alice Bastable, and the rightie (which was always larger) is her big sister Dora. They are characters in a short series of wonderful books by Edith Nesbit, written from the late 19th to early 20th century. Dora was quiet and well-behaved, and Alice was a sweet but scrappy little mischief-maker and fighter, greatly admired by her brothers. So my Alice has gotten herself into trouble, but she will plan and, if necessary, fight her way out of this predicament!
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I could use some help! I was diagnosed in January with invasive Stage I, ER positive and after needing to back out of a trial, got my lumpectomy scheduled and done March 12--they took one lymph node under my arm. After healing I went through 21 days of rads which completed in mid May. I have been great. Healed fast, no pain (or not much). I started taking arimedex about a 5 weeks ago with mild side effects. My margins were clear, node was negative and oncotype score was very low, 5 so there is no reason for me to worry.
Two issues have materialized.
1. I got a small "knot" or lump on my back a few inches behind the lymph node scar that was evident for almost two weeks. By the time I got in for the ultrasound ( a week later) to make sure it was nothing, it had all but disappeared and the test result was normal. My GP suggested an MRI to be sure but I don't want to do anything unnecessary.
2. Now, 4 days later, the areola of my breast, same side as the lumpectomy is swollen and darker than the other side. Since the removal was on the side of my breast, this shouldn't have any effect but of course radiation treated the entire breast.
I don't know if some of this is normal --- I completed radiation two months ago and seem to have healed from that.
I am the last person to overreact to medical issues but of course, with a breast cancer diagnosis, it is hard not to notice every little thing.
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Alice, thank you for the laugh. In one posting you aptly named your body parts and even developed their characters.
Glad to see you can keep your sense of humor. Let us know what you find out tomorrow
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Alice, here’s a question: if they remove your kidney will they take the adrenal gland that sits atop the kidney. The adrenal glands are the reason we have to take AI’s? Would you need to take only half the dosage of the AI
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Bella2013, I had no idea about the adrenal gland placement! Wow, another question to add to the list. This experience of having to learn so much about my own body feels like a long-delayed karma for hating biology classes over 50 years ago.
Alice and Sidney thank you for the information and the compliment on their personalities!
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Thinking of you Alice, your humor will help you along nicely, if we can’t laugh sometimes I don’t think we could make it . Keep us posted on what your find out. Use us here as your support , so many wonderful, smart women (and men!) here
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Thank you gigibee!
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Spoomom- contact your RO and ask her or him to take a look. I believe it could be residual from rads, but only a Dr can tell you for sure. Put you mind at ease after seeing RO. Best wishes to you!
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Brilliant, Alice!
Spoomom, the "bump" that appeared and then disappeared was probably "cording" (aka Axillary Web Syndrome). Sometimes, like truncal lymphedema, it seemingly manifests nowhere near the armpit, but originates there nonetheless. (For me, it was forearm & wrist). And my nipple & areola on my radiated breast are darker & thicker (less sensitive) than on my "normal" one. I had 5 fewer rads sessions than you did. I asked my RO about both--and that's how I learned. Hang in there!
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I just had lumpectomy on July 25th. I had the bandages come off Monday but steri strips are still there. I went to lay down to try to sleep and I heard liquid “whooshing” sounds from my L-breast. The surgical site- now I’m a little freaked out. It doesn’t feel warm- can an infection be starting
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Jayjayelle72- the noise might just be fluid that fills the void where your lumpectomy was. Tumor removed, the body fills that area with fluid. If in doubt, call your surgeons office.
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Jayjayelle72, I had the wooshing sounds too after my lumpectomy. It was so bizarre and unexpected but CindyNY is right...we have lots of fluid in our breast and the fluid will fill the void. It will dissipate over time
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I saw the urologist today for Sidney the Kidney. Nice guy, he remembered hubby from one visit months ago when he had a small kidney stone. I like docs who see the whole person and not just the body part. Looks like the whole kidney will be removed due to the tumor size, plus, unlike breasts, a radical nephrectomy is an easier surgery and has fewer post-surgery complications than a partial nephrectomy. Now it's just a matter of all my various docs conferring to determine a timeline. Looks like re-boob next Wednesday, then Sidneyectomy later in the month, then radiology when the RO thinks I can do it. Urologist agreed I may need pain pills and possibly a tranquilizer to get through rad set-up positioning, with extra incisions healing.
I'm feeling a bit ancient realizing I have doctors named Stephanie and Zach. Those names got popular some years after my son was born!
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thank you Bella
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thank you Cindy
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Alice, good to see you have a plan coming together. I had surgery two weeks ago and I am certain the anesthesiologist was about 18 years old! LOL
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Bella, it's tempting to ask to see their driver's license!
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glad you have a plan falling into place Alice !
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Alice, glad it's all coming together--and that it'll be a smooth set of processes. Adios, Sidney!
Jayjayelle, definitely sounds like a "seroma." Nature abhors a vacuum (as do my cats), and after any "-ectomy" surgery (breast, abdominal) seeks to fill the void with fluid. (After my DH's hemicolectomy & hernia repair, he had a doozy of a seroma for a few weeks). The larger the tumor cavity, the more fluid, the larger the seroma, and the higher the likelihood of hearing "sloshing," especially if closer to the surface. Annoying but harmless. (The axillary seromas from the sentinel node biopsies tend to cause more trouble and hurt--because not only are they closer to the surface but because the armpit "sees more action" than the breast incision area).
Of all my health care providers, only my primary care doc, shrink and dentist are my age or older. The endodontist today is the same age as my son. (But she's really, really good).
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At least we don't have to worry about the young sprout docs retiring! I lost my long time optometrist and dermatologist to retirement and it's hard to adjust to their younger (and more aggressively energetic) replacements.
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AliceBarnstable- I picked my cardiologist because he is young. He will be up on the latest cardiac stuff, and he will out live me!
My step son is a Dr. (gastro fellowship in Pittsburgh) and he gets asked all the time how old he is. He tells his patients "old enough to be your doctor." He just turned 30. LOL
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Oh, I like my young docs a lot.
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I have older doctored, prob not too far from retirement but highly regarded in the field. I just realized I will prob have to find new ones at some point when they retire .
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