October 2018 Surgery Support Group
Looks like no one has started this group yet, so here goes. I'm scheduled for a lumpectomy and sentinel node biopsy on October 2. I've already had neoadjuvant chemo, so my main concern is what the results will show after the surgery. So many things to worry about, I lose track sometimes. Join me?
October 2018 Surgery Calendar
Oct 2 - Sillyoldrabbit, Lump
Oct 3 - Diane500, MX
Oct 4 - kista, BMX
Oct 8 - SLL101984, Exchange
Oct 8 - Munmunmary, BMX
Oct 8 - Lulabell75, Lump
Oct 9 - Proud_Patriot, BMX
Oct 10 - BethM29, BMX
Oct 10 - DWiseley, Lump
Oct 15 - apatient, BMX
Oct 17 - Kanona7795, BMX
Oct 17 - Dominos, BMX
Oct 17 - Raysal, Lump
Oct 18 - Bubblybubbles_1, Lump
Oct 18 - Stherye, PBMX
Oct 18 - PurpleCat, SNB
Oct 19 - GAWarrior, BMX
Oct 22 - Julesm59, Lump
Oct 24 - llup, BMX
Oct 24 - star2017, Exchange, OOPH
Oct 24 - Dovely, BMX
Oct 25 - Dani444, UMX
Oct 25 - Kat22, Lump
Oct 26 - DeeDeeT, Lump
Oct 29 - BluGene, Partial MX
Oct 30 - Trishyla, Revision
Oct 31 - Naesha, BMX
Comments
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I am also scheduled for surgery in October. I had neoadjuvant chemo. I am scheduled for a bilateral mastectomy with sentinel node biopsy.
I had scans after my 5th chemo and there were mixed results. The US and mammogram showed the tumor had shrunk from 2.7/2.5 cm to 1.7/1.1 cm. I had an MRI that does not show any signs of a tumor. I am not sure how that can happen.
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Proud_Patriot, your results sound very hopeful albeit confusing. Surgery will reveal the truth for us both.
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Hello! I'm joining the group - I am scheduled for BMX and sentinel node biopsy on 10/19/18. Also, TEs will be placed then and I'll have exchange surgery in early 2019.
Sillyoldrabbit, I'm also tnbc with you. I finished neoadjuvant chemo on 9/5/18 (4 AC and 12 T).
Proud_Patriot, did you have a recent mammo/US/MRI (you said you had them after your 5th chemo - not sure if that was recent since I had 16 rounds of chemo). I'm with you on being confused on imaging results, though. I just had my mammo and US on Friday (will have my MRI tomorrow). The radiologist told me I had great results because there was nothing definitive left for her to measure. She also told me there was an area by the biopsy clip that had some "dark and light" areas in it, but it was likely the core biopsy scar and that surgical pathology would clear everything up. Today, I read the radiology report and it says "an area of questionable architectural change is noted" and "the imaging findings are best described as a partial response to chemotherapy." Huh?
This may help clear things up for you: https://pubs.rsna.org/doi/full/10.1148/radiol.2017... "There is overall good agreement between residual tumor size measured on MR images and pathologic tumor size determined after surgical excision. Studies have shown that MR imaging can overestimate or underestimate residual tumor size, with a median correlation coefficient of 0.70 (range, 0.21–0.98) reported in a systematic review by Lobbes et al (33).
There are several factors that have been shown to affect the diagnostic accuracy of MR imaging for therapy response assessment. Tumor molecular subtype is one key factor. Accuracy of MR imaging in determining residual tumor size after neoadjuvant therapy is greatest in ER-negative/HER2-positive and triple-negative tumors and is less accurate in luminal tumors (40,41). The type of chemotherapy regimen can also influence diagnostic accuracy of MR imaging, which can underestimate residual disease in patients treated with taxanes and antiangiogenic drugs, through hypothesized antivascular effects on contrast enhancement."
I've also read many threads here on breastcancer.org where people report that imaging showed the tumor was gone and it was actually still present at surgery OR that imaging showed it was there, but it was totally gone when surgical pathology examined the tissue. I have extremely dense breast tissue and I know that affects imaging's ability to see tumors, too.
Fingers crossed that we all get pCRs!
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Welcome to the party GAWarrior!
Apparently there are limitations to the accuracy of all types of imaging. I had an US after the 12 weeks of Taxol/Carboplatin, and freaked out when I saw the image of my old "friend" back on the monitor, looking pretty much the same as before chemo - shapewise, anyway. It was no longer palpable, so I had been expecting the scan to show nothing there. However, it had shrunk by more than half, so that was the good news. When I asked my surgeon about it, she told me she doesn't even bother to look at US scans because it's impossible to tell if what she's seeing is tumor or scar tissue. So, living in suspense here, as I imagine I will be for the rest of my life.
I was originally scheduled to have an MRI instead of the US, but my insurance wouldn't cover it since I'd already had one at DX.
Proud_Patriot, I wonder if it's possible the mammo and US were showing scar tissue, while the MRI was showing cell activity. If the tumor cells were dead, there would be no activity to detect. That would be so great!!
GAWarrior, has your MO talked to you about Xeloda if you don't get a PCR? It used to only be given to Stage 4 TN women, but is now being given more routinely to Stage 1-3 women who don't get a PCR. Rough estimate is that it reduces the risk of a recurrence by about 9% (or so they tell me).
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Thanks for the welcome, sillyoldrabbit! I'm sorry we're all here, but glad to have the support.
I had no imaging after DX until now - that would have shocked me to see the tumor there like yours was! I could also feel it shrinking and no one can feel it now, so I'm confident this is scar tissue. Still, it bugs me to hear "partial response." I know they don't want to jump the gun and say it's gone if it isn't, but we all need some positive news at this point. I guess that's what the radiologist was trying to say when she said it was a very good outcome after chemo. Her report kicked me right off my happy cloud, though. Thanks for saying your surgeon doesn't bother to look at US scans because she can't tell what type of tissue is there - that helps. My BS said something similar when he did a quick and dirty scan in August - "it's probably the biospy scar, but it could be residual tumor. We won't know until we get the pathology report." Yep, living in suspense along with you.
I haven't seen the MO since I finished chemo. I have an appointment on Wed this week and I suspect we'll talk about "what ifs". Another lady in my chemo group (also tnbc. She was stage 2) will start xeloda after her rads (I don't think it's done simultaneously?). She had 10% residual left. I'm ready to do it if I have to. I wonder if that will delay hair growth? I have sprouts and was hoping for hair by Christmas
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I have surgery on Oct 10th for double mastectomy. That will be followed by chemo treatment. Very scared and overwhelmed
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I am to have UMX on October 25, with sentinel node biopsy. I am hoping they can do the direct to implant, my PS said if my skin looks too traumatized she will put in an expander first. I had said I wanted to try nipple sparing but now question it. My cancer is pretty close to my nipple, and she said she would do a biopsy from the back of the nipple and I would have to go back in if its positive. I had to wait a bit, and go back for more biopsies after my MRI, and then they had had a tumor board about my case. They finally decided my cancer is 4.7 cm. I am curious what the final path will be. All three imaging modes measured it differently, but I have ILC and it is good at hiding on imaging. BethM, I understand very well being scared and overwhelmed. I hope for some moments of peace for you.
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October 4th I go in for my bilateral mastectomy, sentinel node biopsy with nipple sparing. They're planning on also inserting the expanders.
I'm so nervous and scared and anxious. I know things will get better & I know all the pain is temporary.
They need to do my Oncotype DX test to determine if chemo is necessary.
@Dani444 I'm ILC too & they're assuming my tumer is larger then imaging is showing.
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Oct 31st is my surgery date for my bilateral mastectomy and lymph node removal as well. They are doing the tissue expanders for now and reconstruction after 6 months. Like every one of you, I am also scared and nervous that my body will be different after that. I went through 4 AC and 3/12 taxol plus carboplatin. The tumor on my left breast has decreased but the tumor on my lymph node around my armpit tends to be stubborn and has not been decreased. It is shown as less active when during the MRI but the size is constant since the beginning while doing the ultrasound, so its confusing to me as well.
Oct 8th is my last day of Chemo . I am looking forward to this date and also getting more scared as surgery date will be approaching. I hope everything goes well for all of us.
Take care ladies.
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Welcome to our little panic attack group, BethM29, Dani444, kista, and Naesha!
Looks like I'll be first under the knife, though I don't remember volunteering for that honor.
What are you all doing to try to stay sane during this anxious time?
I've become a master (or mistress?) of distraction therapy: work, cooking, games, reading, Netflix, Prime video, baseball, pottery, puzzles. Mostly the same things I did pre-Dx, but I seem to become more deeply absorbed by these things than previously as a means of escape.
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GAWarrior, I also wonder about the effect of Xeloda on hair. I've been reading the TN/Xeloda thread, and haven't seen anyone mention it yet. The most talked about side effect is hand/foot syndrome which seems to affect mostly the feet. However, I've seen hair loss listed as a possible side effect. I've ordered a laser cap from a company affiliated with my clinic to hopefully boost the regrowth. May be a waste of time and money. <shrug>
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Sillyoldrabbit, what is this laser cap you speak of?
I've been taking a mega dose of biotin since I finished chemo. My hair is sprouting and the the sprouts are growing, but my hair isn't filling in. I'd say I have about 10% of my hair and that's about half an inch long. I'll try anything to boost the growth and get more hair! I know your surgery is a week away - scary, but it will be good to be moving forward. I sort of wish mine was sooner than 10/19, just to get it over with. Meanwhile, I'm reading, walking/jogging, cleaning out accumulated junk in the house, and trying to get prepped for surgery (making extra food, buying button down shirts at Goodwill, etc).
Proud_Patriot, I had an MRI yesterday to follow up on the mammo/US I had on Friday. The mammo/US showed a small bit of either scar tissue or residual tumor by the biopsy clip - but the MRI shows nothing there at all, per the surgeon. He said the MRI is more focused and detailed and that's what they go by.
BethM29, this is definitely scary and overwhelming. It feels like getting tossed into a blender - it all comes at you so fast. You can do chemo! There are tons of tips on this site and I just finished 20 weeks of it, so I can answer questions if you (or any of you on here) want to PM me or ask on this board. It wasn't fun, but it wasn't nearly as bad as I thought it would be. Take it one infusion at a time and you'll get through it.
Dani444, you're in good hands with a tumor board looking everything over. Re the nipple-sparing procedure - it sounds like your surgeon has a good plan. I bet you can change it if you don't want to do nipple-sparing after all, though. Go with your heart (even though your heart is probably very confused right now).
Kista, you can do this! Surgery will be another step toward getting this nightmare behind you. We're here for you if you need to vent! Hoping you can avoid chemo with a low ONCOtype DX score. If they want to do chemo, try not to let them rush you into it. Try to give yourself at least 3-4 weeks after surgery before you start. Chemo delays healing and you want to have the best chance of getting good healing done first.
Naseha, you're almost done with chemo - yay for you! It will be a relief to ring that bell on the 8th! It's good that you'll have a couple of weeks to let some of it get out of your system before surgery. That will help you heal faster.
Hugs to you all - wishing you peace as we all move forward.
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GAWarrior, I seem to be doing the same! I just got done cleaning out my basement (again!) And I was going to hit the goodwill for shirts as well, I was going to sew a couple of pockets on the inside for my drains. I can say that my house has never been cleaner since my diagnosis, that's how I get out my nervous energy most days. Thank you for your encouraging words. I appreciate everyone so much!
Prayers, hugs and good vibes for everyone's upcoming surgery!
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Hello all! Guess I'll jump in here. I finished my last TCHP chemo on Sept. 18th, met with the surgeon the same day. So what's known is that I have 3 lymph nodes being removed for sure, she'll be able to determine during surgery if more need to come out. Also doing lumpectomy on 2 different spots in right breast, the main tumor and another smaller one that she says is pretty deep. I told her I don't want a mastectomy but will go with her recommendation. She said she's willing to give it a try, as long as I understand there's a possibility I may have to go back for MX later if she can't get it all. Surgery is Oct. 25, marker placement the 22nd.
Couple things: I had a PET scan just before starting chemo and a couple US, but I've never been sent for an MRI which it seems like everyone else has. Wonder why? And my MO said the same thing about reading US: no way to tell exactly what that mass is until post-surgery pathology. So I'm with y'all on wondering just what's what and how much chemo worked. Oddly, I'm not worried about the surgery. I'm one of those people who can deal with about anything, I just can't stand not knowing. So I feel like I'm ready to just do it so I can have answers. That said, she said 4 weeks post-chemo before surgery and I actually asked her if I could have 5. October is my favorite time of year, I just want a few weeks to feel normal and enjoy it. She readily agreed. Now if I could just get past these damn post-chemo SEs......
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How are you guys planning for comfortable sleep post surgery? I have read on some threads about using a foam wedge maybe. Or maybe just start hoarding pillows? Any other tips that others have? I am a stomach sleeper so this might be rough
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I am a true side/stomach sleeper. A bit pricy, but the wedge system aboveworked for me. I needed to sleep on my back 6 weeks after bilateral mastectomy and again after exchange. For me, worth every penny! Good luck!
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Hello! Just chiming in. I have my (hopefully!) final revision surgery on October 30th. Just a clean up of the abdomen (lipo and scar revision) nipple recon and some minor fat grafting. Then just the tattoos and I'm done.🙂🙂
Also wanted to share my experience with Xeloda. I did 7 (of 8) doses of Xeloda at 3500 mg per day. I finished on January 3rd of this year. It was tough, but doable. The hand foot syndrome can get pretty bad, but there are tips for minimizing the side effects on the Xeloda thread.
I did not lose any hair while on Xeloda, nor have I heard of anyone who has. I think that's an extremely rare side effect. My hair has been growing steadily since I finished A/C almost 2 years ago. It would probably be past my shoulders now if I hadn't been cutting it. I have some crazy chemo curls, and it looks best short and purple. 😁😁
Good luck to everyone just starting this journey. It's a hard road to walk, but you can do it. Just put one foot in front of the other. As Winston Churchill famously said: "When you find yourself going through hell, just keep going.".
Trish
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Well, I’ve been looking for distractions as well. I’m a stay at home mom so I’ve been cleaning like crazy, yard work, and was using my hubby 😉 as a good distraction til they made me remove my birth control. Now we are stating a small kitchen remodel that he chose to do to help me cope (love that man)!
Aside from that just trying to stay busy doing whatever I can. I’ve never been a great cook so would be nice to learn that skill.
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Hi all!
I have a BMX scheduled for October 17th. I completed neoadjuvent TCHP on Sept 14. Oddly, starting chemo, I wasn't all that nervous - but I am so anxious heading into surgery. I'm not sure what element of the surgery has me so worked up, if it's the surgery itself, or if it's the fact that I'll be out of commission and not able to do anything for our three young kids (7, 5 and 18 months).
@SimoneRC I am a stomach sleeper too! I will look into this wedge, it looks amazing!
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Dear Dominos,
Welcome to the BCO community. We are sorry about your cancer and your upcoming surgery but so glad that you reached out to our members. We wish you all the best as you get ready for surgery. Stay active here and keep us posted on how things go for you. We are sure that you will make connections here. Let us know if you need any help with navigating your way around. The Mods
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Welcome Kat22, SimoneRC, Trishyla, and Dominos!
GAWarrior, the laser cap supposedly increases blood flow to the follicles, feeding and stimulating them. They sell similar devices on Amazon (enter search terms like "laser hair restoration"), but I decided to get one from the company affiliated with my clinic because the lasers are "medical grade," whatever that actually means. Also, my son tried the helmet type he bought on Amazon and found it too heavy - gave him neck pain. The one I'm getting has 72 lasers attached to the lining of a lightweight baseball cap. The company I'm getting it from is the National Hairless Assoc (https://nationalhairlossassoc.com/cancer-related-hair-loss/). Brilliant idea to get the button-down shirts! Must go shopping ASAP! Isn't it strange that in the midst of this life and death struggle we worry about our hair?
Dani, if you run out of things to clean, please come visit me!
Kat22 - I wonder if your insurance company may have denied the MRI. Mine OK'd the first diagnostic MRI, but denied a second one after several months of chemo. Would have cost around $2K to pay out of pocket, so I declined. Hopefully, you'll find that the residual chemo side effects will diminish every day. I'm about a month PFC and have a lot of my energy back, and the GI issues have subsided. I still have some neuropathy in my toes, though.
SimoneRC, it's so helpful to have a veteran join us. I noticed your mention of an ATM mutation. I have one also, but it's apparently so rare they don't know yet if it has any bearing on BC. Did the mutation determine your treatment plan at all?
Trishyla, another veteran! It must feel wonderful to be so close to the finish line. What was the toughest thing about Xeloda? My NP described the side effects as "well tolerated," but I assume that's code for some degree of suckiness.
Kista, I cracked up when I read that you've been "using" your husband as a distraction. Yes, I imagine that would take one's mind off things for a while.
Dominos, I'm so thankful that my BC waited until my kids were all grown. I think part of the fear we all experience comes from the fact that we're dealing with the big C. Just the word itself is terrifying. I'm also thankful that we live in a time when we can talk about it so openly. It really helps. My grandfather died of colon cancer, and this was during a time when doctors kept the diagnosis hidden from the patient. It created an awful wall of silence. We all knew but weren't allowed to say. He was a smart man, and probably figured it out for himself, but couldn't talk about it because he knew we couldn't talk about it. Now, even though we can talk about it, it's still the monster under the bed.
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haha, Silly!It’s so true though! Poor guy knows he was used too. Plus may as well while I can. Heard my sex life will likely tank after this and the estrogen blockers. 😉
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Hi sillyoldrabbit,
Thank you for the welcome and sorry you need to be here.
I am being treated at a major cancer institute. The ATM mutation is linked to breast cancer. Not as strong as BRCA. With my deletion, my odds of breast cancer were up to 60%, although for me it was ultimately 100%. My genetic counselor disagrees with Invitae, the lab that did my screening. She does not think the risk is that high for the general ATM population. But all agree the risk is much higher than for the average woman.
There is a risk of radiation toxicity with the ATM gene mutation/deletion. Studies not in complete agreement. That being said, I have a sibling who developed a different cancer at about the same age as I was diagnosed. 5 years after completing radiation she progressively developed severe radiation induced plexopathy. She too has the ATM mutation/deletion. The RO at the major cancer institute did not want to do radiation on me given my sibling’s experience.
The ATM mutation/deletion is also linked to an increase risk of contralateral breast cancer.
Given the above, I made the personal decision to have a bilateral mastectomy. I did not want to risk developing more breast cancer that had already spread to lymph nodes before being detected. Every member of my medicalteam supported me in this decision.
Good luck on your journey. Lots to take in and think about. Keep reaching out. So many helpful women on this site!
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Hi everyone,
I am scheduled to have lumpectomy and full node removal on right breast on october 18th. I finished 8 rounds of chemo before and according to my doctor, my response is very good to chemo. Thats all i know medically tbh. I am so amazed that all of you have so much knowledge and even know medical words. To me, its like a different language.
My breast cancer was diagnosed after 10 days od c-section. Taking care of newborn and going through chemo therapy has been rough but i am finally done. After surgery, i have atleast 25 rounds of radiation. Then I have 1 year of herceptin every three weeks and 5 year of tamoxifen.
Any tips for lumpectomy? I am getting myself ready but scared
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Sillyoldrabbit, The worst thing about Xeloda is that, like all chemos, the side effects are cumulative. The HFS, the blurry vision, the fatigue, all worsen over time. I was doing okay, hanging in there, until my 6th round. I powered through that one and through round 7, but just couldn't muster up the strength to do an 8th round. Fortunately my MO understood. She was happy with 7 rounds.
As tough as it got, I'm glad I did it. Based on my research, it upped my ten year survival rate from about 63% to about 85%. Definitely worth it for me.
In comparison to your NP, who is most definitely minimizing the side effects, I had a wonderful oncology nurse who refused to sugar coat anything. I called her after my first A/C infusion and said: I feel really weird, Bev. She replied: Of course you feel weird, dear. We've just poisoned you. It was kind of comforting, in a strange way.
Trish
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Sillyoldrabbit, thanks for explaining the laser cap. It looks interesting but I think I'll wait for my hair to grow on it's own after I saw the price. <gasp> How weird that your grandfather wasn't told he had colon cancer. I know people often didn't talk about having it, but it's strange that the doctor wouldn't tell the patient. How would you explain why you keep telling this man he has to come in for treatment if you don't tell him what it's for?
SimoneRC, thanks for the wedge sleeping info. I'm a side sleeper so having to sleep on my back after BMX is going to be rough. Plus, I'll have TEs and I hear they're not easy to sleep with either. If nothing else, I will grab the pillows from the various beds in the house and pile them up. I've also heard that for us BMX ladies, it helps to sleep in a recliner for the first couple of weeks, although I hate that idea almost as much as having to sleep on my back.
Kista, I'm sure your hubby was pleased to be used for distraction purposes, lol. I'm still chuckling.
Bubblybubbles and Dominos, I can't imagine going through this with young children. Big hugs to you both. Bubbly, FWIW, a few ladies in my April chemo group have said that surgery is much easier than going through chemo. There will be pain for a couple of days with your lumpectomy, but try to stay with the pain meds and take them on time. In my experience with chemo, if I didn't take my nausea meds on time, it was much harder to stop it once it started, but if I kept the meds in my system, I didn't get nauseous. It's the same with pain meds. Don't chase the pain, keep the meds going so you don't have to catch up. I hope that makes sense (I feel like I'm not explaining it right).
Kat22, my BS said he wanted 6 weeks PFC before doing surgery because I'll heal better, so it's good that you're waiting 5 weeks. Sadly, SEs apparently take a long time to pass. I'm 3 weeks past chemo and still have tender fingers from the T, blurry vision, and am often exhausted. I'd also be happy if I had some hair, although I do have fuzzies and my eyelashes are coming back.
Trishyla, love your onco nurse! Good for you, you're almost done!
Hoping you all have a great weekend.
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SimoneRC, I went back and reread my test results and realized that I was using the word "mutation" when I really should have noted that I only have a VUS (variant of unknown significance) in the ATM gene. It's apparently so rare that I can't find any further information about it online, but the lab stated that it's predicted to be benign. <shrug> How can they know that? If I were in your situation, I'd absolutely opt for a BMX as well. You're very brave!
Welcome Bubblybubbles_1, though I sincerely wish you didn't need to be here. I can only imagine how difficult it must be to be going through this while taking care of a newborn. My lumpectomy is this coming Tuesday, and there isn't much in the way of preparation. I'm supposed to take two showers the day before and another on the morning of the procedure using antibiotic soap. Nothing to eat or drink beginning 8 hours before surgery. They said to wear loose fitting clothing. A button down shirt seems to make the most sense, since I'm not sure I'll be able to raise my arm afterwards. No perfume, deodorant, makeup, etc. But that's about it. I'll post all the gory details after the event. Hang around these boards for a while, and you'll soon have more medical jargon at your disposal than you've ever hoped for. I learn something new every day here.
Trishyla, thank you for the reality check on Xeloda. Sigh. I had a hunch it was too good to be true. So much to look forward to!
GA_Warrior, yes, the price on those things in jaw dropping, especially considering they may not even work. At least the company selling the helmet type on Amazon offers a complete refund if you don't get results within 6 months. My hair was already on the thin side before any of this, and I guess I'm fearful that it'll come back even skimpier. Sillyoldrabbits do this sort of irrational thing from time to time, as my husband will be sure to confirm.
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sillyoldrabbit,
I so hope your ATM VUS never ever amounts to anything at all!!!
Sending you virtual good karma
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GAWarrior, I forgot to respond to your comment about the wall of silence regarding a cancer diagnosis back in the day. I have no idea what lies the doctor told my grandfather, but I do know he never had chemo -- just several surgeries. Eventually it metastasized, and that was the sad end to the story. However, your question did make me wonder just how widespread this secrecy was at the time. I found this article: https://bioethics.georgetown.edu/2015/10/truth-telling-in-medicine-problems-old-and-new/
I'll pull out just this one sentence: "In the early 1960's it was common for oncologists to not disclose a diagnosis of cancer." Yep, this was close to my unfortunate grandfather's time frame (mid to late 60's). It seems unconscionable now.
SimoneRC, sending good karma back at you!
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