Lumpectomy Lounge....let's talk!
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Sigh. Now my back just went out on me--been a year and a half since the last time (seems like only yesterday), so I guess I was due. Mold action alert day (stay indoors, run A/C with windows closed) today, so no problem being on 20mg of Baclofen. Not gonna attempt to wriggle into a bra, so those caftans will come in handy. Might try some of that CBD balm on the back--it did help calm down my wrist & arm, and a couple drops of the oil under my tongue helped me get to sleep. Housekeeper brought up an ice chest and is going to get 2 bags of ice--she won't be in tomorrow when the fridge repair guy comes to either fix the thing or pronounce it dead, though she's coming Sat. morning to help get the new one set up.
But my latest visit to Crazy Town is for Bob: he has a tiny mole on his temple that looks like a brownish-black mouse dropping with a bit of red along the top border. (I looked last night through a lighted magnifier with a 10X insert). He found it himself Monday and made an appt. with the dermoplastic surgeon who removes his seborrheic keratoses...for a week from today. My instincts say if it's suspicious for melanoma, get it removed (or at least biopsied) NOW, so call the derm back, describe it, maybe take a photo & e-mail it. But Bob says it can't possibly spread so fast that a week would make a difference. I dunno... We got him through 3 hospitalizations & emergency hemicolectomy for a botched colonoscopy, incarcerated hernia repair (both of which were before my own bc dx), 2 CT scans for a lung nodule, and a harrowing (and painful) 3 days in-hospital on nasogastric suction last fall for a small bowel obstruction (thank you, adhesions), and each time my heart was in my mouth. This time, though, might be the scariest.
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Alice, then there's the curse: May you live in interesting times. Nope.
Sandy, DAMN!!!! That's way too much at once. Hope your back resolves quickly. And good heavens! That spot of Bob's sounds very ungood. I'm with you: get rid of it NOW! Here's sending the gentlest of hugs and loads of love and support, Dear Friend.
HUGS!
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He says that he wants the mole completely excised next Thurs. rather than wait for biopsy results. Cut now, ask questions later. A wide excision with sutures would still need just a large Band-Aid, so he's fine with that. His glasses would cover most of it. I just hope he won't require an SNLB, which could lead to lymphedema even if the nodes are negative. (Neck node removal is a much higher LE risk than is axillary).
I noticed a new one on my own leg, and just sent photos to my derm via NorthShore's patient portal. Bob's derm isn't part of Advocate's portal, and Bob doesn't have a patient account on it (only a provider acct.). He does have one for his gen. surgeon's health system (also our primary care doc--was Bob's Chief Resident at UIC--whom he has yet to see).
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Oh good heavens! I never even thought of that. I can see why that is a major worry for you since you are intimately acquainted with LE. Damn.
HUGS!
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So sorry Sandy. Seems it never stops. Hopefully the spot will turn out to be just another seborrheic keratosis. I've had a couple that appeared quite alarming, but thus far they've just been sk's--hoping for the same for Bob! He has certainly been through enough. Quite enough. Also hoping your back, your wrist, and your arm leap forward healing-wise.
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The bulge on the side of John McCain's face is LE from sentinel node removal during his last bout with melanoma a few years ago.
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ChiSandy- Just the thought of my back going out again scares me. Plus the stress with your arm, add in worry about your husband. Your cup runneth over. May the force be with you!
My latest is my partner of 23 years was diagnosed with DVT. He has a blood clot behind his knee. Urgent Care, then ER, now on blood thinners awaiting follow-up with PCP. Cardiologist appointment is a full month out.
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Cindy, fingers crossed for your partner--good that he was able to get on blood thinners, but a month wait for cardiologist? Yeesh--specialist appointments are getting harder & harder to get. I see my breast surgeon annually and my derm semiannually--and am urged to make the next appt. before leaving the office. My breast surgeon is now booking followups 8 mos. out!
I have worn facet joints in both cervical (since age 27) & lumbar (since 31) spine, so I need to be really careful about back health. The only X-rays in my charts that don't mention "degenerative joint changes" are dental. A pet peeve of mine is that people who don't have back issues lump all of them into the same basket. A sore back (arthritic) is not the same as a severe back spasm (often caused when a spurred disk grazes a nerve). I've had both, and though the former is no fun it's tolerable; the latter totally turns one's world upside down for at least several days.
My most dismaying back spasm was when, 4 mos. pregnant, we visited Mammoth Cave. There were two problem sections about which we were warned--Fat Man's Misery and Tall Man's Misery. Being preggers, I worried about the former but squeezed through just fine. At 5'3", I wasn't at all worried about the latter--but the minute I ducked even slightly, yeee-OWCH! We got to the center of the cave where there were picnic tables with benches. The park ranger had me lie prone on a table while he pressed on my back. Everyone else got to exit via the elevator--but I was ordered to take the spiral staircase, all 144 steel steps, to keep from locking up. I spent quite a bit of the weekend getting intimately aqcuainted with icepacks and a knee pillow. We visited Nashville, but I don't recall how I coped. No painkillers or muscle relaxers allowed.
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Sorry to hear that, Cindy. I just had a DVT, along with lots of teeny clots thrown to my lungs. The good news is that once you've started the bloodthinners, your chance of clots breaking off descends to just about zero. Not sure whether I posted it on this thread, but I had stopped tamoxifen about three weeks before, yet my onc believes tamoxifen was one of the precipitating factors. The other was that a week before I had an episode of pseudo gout (hip felt like I was standing on a razor, so absolutely no weight bearing). I spent about 24 hours consciously not moving that leg.
For about two days, my calf felt like I had a muscle cramp. I kept feeling the leg, looking for heat and redness, which they tell us are symptoms of a clot. Nada. Later, they told me the clot had probably been forming for weeks and when it forms slowly, the redness and heat are not necessarily going to be there. It was shortness of breath that sent me to the ER. Self diagnosed, but pretty cranky about not knowing that the supposed signs of a clot did not apply. One sign that did apply (although I'd never heard it before) was that this calf was three (I think) centimeters wider than the other.
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tinalph. It is tricky managing people's attempts to assist. Managing this at work has been my personal challenge. For me, honesty works best. The approach I took was to say. I truly appreciate your concern. I am a very private person and need to keep this to myself. I truly men no offense and do very much appreciate how much you care.
I find people do want to do what is most helpful
Best wishes.
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Wheeee!! I'm finally out of that damn post-surgical sleeveless straightjacket compression torture device! In comparison, the zip-front sports bra feels like free-boobing. I don't remember feeling so constricted after the lx last month. Maybe this one was a smaller size, because it was horribly uncomfortable. I thought my ribs were going to crack. Now I feel relatively normal. Well, for me.
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Hey, I was finally able to hook a real bra in the back rather than step into it! (I wore a caftan today and still my "global asymmetry" was rather evident beneath the knitted fabric). So I'm wearing an actual "grownup" dress, not an Old Navy T-shirt one.
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I was surprised when I finally put on a regular bra last week that both boobs filled it up the same. Without a bra, there is quite a difference, since mine are measured in length rather than girth in my saggy old age (worse since I've lost about 70 pounds in the last several years). Dangle-wise, Alice the leftie lost between a third and a half in length compared to big sister Dora. But I guess the volume isn't too different, just the shape. One overripe mushy papaya on the right and one dented, only slightly overripe sprite melon on the left.
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I'm almost 4 weeks post surgery. Went to work for 5 hours a day on Thursday and Friday. I took it slow. Kept to myself. Desk work. Eell, I literally slept the entire day Saturday. Today (sunday) i feel wiped out. I have not been exercising which I hear helps with low energy levels. I am going to go to the gym and do a light workout. Before my DX I was diagnosed with low iron. I take two iron pills a day since March. I just can't believe how wiped out I feel. Anyone else have fatigue? The thought of radiation fatigue worries me.
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Oneof7 - don't be too hard on yourself - you have been through alot and I think fatigue is normal...light exercise might help a little.... I also worked a desk job but it was exhausting at times.... it does get better though. Radiation wasn't bad - half way through though I started to get worn out and the boosters at the end were tiring but knwin it was ending soon helped..
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alicebastab. Ive always wondered why breasts are referrednto as various fruits. LOL
Iamnancy... tx.
Went to PS today. He confirmed I have slight infection on both breasts. Area is red just under areola. But ouch it hurts on the right side. Got around of antibiotics. It means my radiation will be pushed out a few weeks. I'm on STD and working 5 hours. I hate to see this extended. Insurance set an end date of September 11. It's going to be more like mid October. Anyone else on short term disability?
My oncodx came back at 16
I am very fortunate. My thoughts and prayers to those of you dealing with more difficulties.. chisandy hope the roller coaster has settled...
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Mini-rant:. I like my PCP, but I do NOT like some of the office staff and always get into stupid arguments with them. I just called to renew the referral to my MO, and they wouldn't do it. First I was told that they don't know that I'll need future appointments so they can't do it. Through clenched teeth, I told this person that the MO is an oncologist and I have TWO types of cancer. Then she told me (after saying "Yeah, well") the request will have to come from the MO's office AFTER my next appointment, which is the day before the initial referral expires. Why didn't she say that first?! This is the same office that screwed up a referral for Mohs surgery two years ago; I was actually at the dermatologist's out-patient center for a 7:00 a.m. procedure when I found out the referral hadn't been sent and I had to wait until the PCP's office opened to call them, throwing my surgery (and several other people's) schedule out of whack. And just last month, when I called to get referrals to the RO and urologist, they gave me a hard time, making me track down the fax numbers for those doctors EVEN THOUGH THEY'RE ALL IN THE SAME CARE SYSTEM and in their computers!! Grrrr. And the stupid referrals only cover three appointments in a 3-month period, so I have no idea what will be covered when I have to see the RO more frequently during radiation.
Rant over, I hope everyone here is coping better than I am this afternoon.
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AliceBastable, I hear ya on office staff. When my DIL had colon cancer 5 years ago, she went through chemo. My son's insurance was through his company and they were self-insured at the time, with BC handling all the paperwork. Well, it seemed half the time the insurance would reject her chemo treatment even though they had just paid for the last one. He spent all his time (at work and home) fighting with them. I wonder how he stayed sane. They aren't much better now that they are no longer self-insured. DIL went to urgent care, IN NETWORK and run by the same hospital group as their insurance and was still sent a bill saying it was out of network! ARGH!!!
HUGS!
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Does anyone have any insight as to why a CA 15-3 tumor marker would remain generally stable, while a CA 27.29 is wildly variable and climbing?
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Peggy, between insurance and the paper-pushers in the doctors' offices and hospital, well all go nuts. I better check the psychiatric coverage! But the staff at my other doctors' offices are great; every time I ask if I need a referral or authorization for a procedure, they say they'll take care of it. I'm almost hoping my PCP retires soon so I can find someone in a different practice that's still affiliated with the hospital I use.
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Funny story (it is now, wasn't at the time). I had a followup appt in June with my breast surgeon. I did not get a confirmation call so I called them the day before the appt. They said he wasn't scheduled to even be in the office that day and should not have been scheduled. So now, because he's so busy, I have an appt later this week (2 months later). When I made this new appt I asked the office person to note on their calendar to please call me prior to my August appt. Now remember, this call/conversation happened in June. SOOOOO, about an hour later I get a call from the surgeon's office calling to confirm my appt that's in August!!! I wanted to laugh but was pissed at the time. I said "seriously? I just made the appt an hour ago. You are calling me now to confirm my appt that's in 2 months?"
It will be interesting to see if I get an actual confirmation call for my appt later this week. My surgeon is great, I just don't care for the office people.
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Thats hilarious and infuriating at the same time, Ellyn27. Ten years ago I was scheduled for an endometrial ablation on a Monday. I got to the hospital at the crack of dawn, went through the prep and IV insertion, and settled in to wait for the surgery. And waited. And waited. The nurses were starting to freak out after a couple hours, so they started making calls. Turns out my GYN had been called out of town for a family emergency that weekend and had left a message with his office, but they forgot to check the machine when they got to work! One of his colleagues showed up to apologize, but wouldn't do the procedure without having personally examined me and done a biopsy (which the original GYN had not done), and called her office to squeeze me in immediately. So I got the IV removed and schlepped over to GYN#2's office in the neighboring building, cranky, starving, and sore because I hadn't taken my arthritis meds that morning. When I got there, the receptionist asked for a co-pay. Luckily for her, GYN#2 showed up just as I was reaching over the counter to grab the receptionist's neck, and yelled "Don't charge her! Don't charge her!" The sequel was that I had endometrial cancer and had to get a thorough hysterectomy. GYN#1 had blithely assumed I was just a middle-aged woman with a messy menopause causing me to bleed heavily and constantly. He'd never even checked my hormone levels, which GYN#2 did, and I was nowhere near menopause at the age of 58. And GYN#1 was the department head at that hospital! It was a total shitstorm in every possible way. So I stay cynical and vigilant for screw-ups at every step in the medical world.
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alicebaptis- good lord. How ridiculous. I would blow a cork. Having shared a similar experience, i chose to speak to office manager and i also mentioned it to the doctor. The LAST thing a cancer patient needs is a bureaucrat on the other end of the line. Inexcusable. Ha. I cant help but rant with you!!
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Yeah, that situation had so many levels of incompetence. If it hadn't been for GYN#2's accidental intervention, I wonder how long that cancer would have gone untreated. Although smallish, it had already nudged through to my uterus. It sucks to have to try to stay one step ahead of the medical profession when we do not have the background or knowledge and have to scramble to catch up.
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Lord protect us from lay bean-counters in medical and insurers' offices!
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I'm a newbie and this is my first post. I have bilateral IDC and am scheduled for bilateral lumpectomy and sentinel node biopsy on August 27th. Does anyone have any helpful tips that they could share with me? Any suggestions on what I might need to bring to the hospital, or what I might need afterwards? How long should I expect to be out of work? Anyone else bilateral? How am I going to wash my hair? lol
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Bring a soft type bra with you - maybe like a sports bra... no wires just softness... doctor will probably tell you to wear it even sleeping for the first few days... have ice packs at home incase it feels sore and/or because there might be swelling...I think after the first few days you will start to feel better... I don't remember being out of work more than a week - but it might be 2 weeks at the most... and I bet you will figure out how to wash your hair once you are allowed to shower
all the best to you and let us know how you are doing..0 -
You will likely be sent home in a sort of sports/posture bra--mine was ugly white, high-backed, closed in front with Velcro...and about 3 sizes too small. If you are smallish, Target or Wal-Mart sell seamless knit bras you can step into; if you are large, LeadingLady's front-close leisure & nursing bras come in lots of colors and even a few patterns, up to an F/G/H cup. They're a bit more expensive--about $25 each. HerRoom.com and BareNecessities.com have them--as do the Full Beauty (Woman Within & Roaman's) sites.
Treat yourself to a shampoo & blow-dry at your favorite salon--you'll have earned it. (If you want to stay in, Living Proof's "Perfect Hair Day" dry shampoo is amazing). Walgreen's sells "Certainty" brand adult washcloths that can freshen you up till you get the ok to shower again (we're talking maybe 2 days). Those U-shaped neck pillows for air travel are great for the sore armpits you'll have from bilateral sentinel node biopsies--wear 'em under each arm like water wings. When you start driving (or riding) again, a small cushion between you & your seatbelt will take the pressure off your chest (and avoid the dreaded shoulder-belt hickey on your neck--tough to explain away without hearing "yeah, right").
Don't freak out if, on the second day post-op, you start feeling extremely stiff & sore from the waist to the neck. It's called "scoline syndrome," from succinylcholine, the potent muscle-relaxer they adminster via your I.V. once you're under general anesthesia so that you are perfectly still makes your muscles contract powerfully for an instant before they relax. You might feel like you'd started that day with a personal trainer with every apparatus set to max resistance.
Ask for a painkiller prescription and fill it before your surgery. They didn't give me one--one squirt of Fentanyl into my I.V. in the recovery room and then a couple of plain (325mg) Tylenols. I got by on 500mg. Tylenol the first few days. But have the filled script on hand. Worst comes to worst if you end up not needing it--pharmacies have official disposal procedures, and the pills are quite cheap so you're not throwing away a fortune. I did fill my Rx before my recent orthopedic surgeries (3 on one arm--got the bulk rate discount), and I'm glad I had them.
Gather up all your takeout menus and have them at the ready--or get a GrubHub.com account.
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Hi Ladies, First... ChiSandy, I absolutely hate to learn about everything you (and yours) have been going through. I think of you as the rock of this group, the lady with all the answers. So knowing that you are struggling is doubly upsetting. It makes me hate to ask my question... but it's the reason we are all here... to find advise or at least common ground, so here goes.
A bit over a year since my last rad. Taking my Anastrozole. Loving work, loving life, feeling healthy. All is well. Or it was, until very recently.
About 6 months ago, my doc put me on Wellbutrin to help with all the usual complaints... due to either the Anastrozole or just the BC... low energy, mood swings, joint aches, depression, and inability to lose weight, etc. They also said Wellbutrin might help with lack of sex drive. But that has never EVER been an problem for me, even at 64. Old and horny and a good sexual relationship with my husband.
Until now. All of a sudden, I have zero interest. And when I go ahead and try, there is no physical response. Even when trying on my own.
(A side note... I guess a combo of old age and no hormones has led to the disappearance of my labia! I've been having fun with that little nugget of info. Asking my older friends if they have checked to confirm that theirs are intact. Found out that they start retreating after menopause. Why did dear old mom not talk about THAT? Well, she also never mentioned a beard, so...)
Anyway, I am totally bummed. I have read that one of the solutions to this is to TAKE Wellbutrin. LOL. I have also read that taking it can cause this problem. yeah. Figures. So... here's my quandry.
I hate to give up the anti-depressant because it has enhanced every other area of my life. And if the problem is due to the Anastrozole knocking out my hormones, I CAN'T quit that.
What's a gal to do? We can still be intimate and loving and I can still do "things" for my husband. But do I need to just accept this as the new norm?
Sigh
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I had surgery 7 August. The tumor was originally judged to be 1cm, but post pathology, 1.9. And I have a .4mm metastis on the single node that was removed. The surgeon removed a single node. He has sent me to a medical oncologist, to be followed up with radiation oncologist. He seems to think I may dodge chemo all together. I really don't know what to think. The surgeon was very encouraging and said, don't worry, 5 years from now you will still be cancer free.
Thoughts?
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