Lumpectomy Lounge....let's talk!

I just did something today that may be my first acknowledgement that I need to resume the rest of my life and put cancer in the background. Even though I no longer practice law, I do hold on to my license for when friends or relatives might need me to go to bat for them on minor legal matters--and after Bob’s surgical scare, I realize that it might behoove me to have something to fall back on for support rather than live off retirement savings. In Illinois, in order to maintain a law license, you have to take and report 20 hours of approved continuing legal education (CLE) every two years. The Chicago Bar Assn. runs a CLE trip to Europe every spring, that offers from 4-7 hrs. of CLE depending on the program they can put together. Two years ago it was Paris & Normandy (Bob went with me), last year Spain (Madrid, Barcelona & Seville--I went solo). This year it’s London, Lausanne (Switzerland--where the actual seminars will be) and finally Paris. I had already made hotel and course reservations (which were refundable) but was on the fence about committing to air and rail fare--as my mom would have said, “didn’t want to give it a kinahurra" (i.e., tempt fate).

But after seeing how capricious life can be, especially with my friend’s new diagnosis, I decided to take the plunge. I booked my airfare from Chicago-London, London-Geneva (there’s a local train to Lausanne that needn’t be booked in advance), the TGV from Lausanne to Paris, and air from Paris back home. The cost of fuel has dropped so low that I was able, with Bob’s permission, to go business class (on British & Swissair)--in fact, it’s no more expensive than Premium Economy was three years ago--just the free business/first class airport lounges and the two free checked bags made up most of the difference. (The flight home isn’t offering Economy Comfort anyway--flying Economy Comfort to London and Business home, with the extra baggage fees on the London leg, came out to less than $200 less than round-trip Business). And for $25 more, first class on the TGV.

Just to be safe, though, I did buy trip cancellation/emergency insurance. I always do. You never know.

Sandy, very smart of you to make the plunge and continue to keep your law license "alive." And what a nice way to do it. DH and I have purchased travel insurance for our trips, too. When I went to visit the boys last summer, I discovered that my Chase Visa card actually offered it free if I charged the trip on it. Well, that was no hardship. We had to use the travel insurance when visiting #2 son in Spokane 8 years ago. DH had an a-fib episode and, while everything was restored to normal, the docs wouldn't let him fly that day (which we were supposed to). The travel insurance, purchased thru AAA, covered all the extra costs. (I'm so envious that you are flying business class - sounds heavenly!).

HUGS!

Hi all - I'm new to this forum. I have outpatient sentinel node biopsy + lumpectomy coming up Tues Feb 23.

I've completed 19 wks of neoadjuvent chemo. Radiology said the MRI looked as though the tumor was essentially gone. Anything I should be aware of / preparing for? Any advice any of you can share pre-op would be appreciated. I feel like all the prep / lymphedema "pre-hab" advice I received was very mastectomy-oriented.

Another "welcome, minnesotalisa!"

Feeling a bit better today but still "off". The worst part is my stomach today... Like someone punched me up high in the gut. I'm actually kinda happy about the food adversions😀 The 10 pounds I gained since dx has been a bit depressing and I hate how it feels on me. And I'm gravitating towards fruit and green veggies in a big way! A banana starts my day, green apple and almond butter for lunch/snack and I had veggie sushi for dinner with brown rice. I'm CRAVING veggie sushi! And of course lots of water. My daughter is going to take me to my favorite vegan restaurant for lunch today... I hope I can eat something more substantial for lunch. But at least I'm putting good stuff into my body. The thought of chips and carbs makes me sooo queasy... And I'm so happy for that😬 But yes... I agree with everyone that my body got this toxin forced in and was like "what the f*€k are you doing to me??"

Welcome sunny! You're so very lucky for quick results.

Welcome Minnesota! Peggy gave you some great advice there.

Welcome Pink! That's a lot of info and I'm sure others here can help.

Mabel- I'm seeing good news in that report... Especially the end stating "no infiltrating carcinoma". Fingers crossed here for you.

Mel- glad to hear someone else had a hard time the first few days. Was each first night of treatment horrible for you, or did it get better?

LTF- There shouldn't be ANY bad nurses anywhere in the field of breast cancer. Especially the nurses who deliver chemo. Just glad she turned it around!

Brit- I missed the part about pre-TSA check for cancer patients. I'm flying to Florida in March... How do I get pre authorization? I'm also traveling mid treatment with my immune system at its lowest... Thoughts? I'll def wear mask and gloves but I'm a bit nervous. I'm thinking that we ask to have an isle seat and away from anyone coughing(if my neighbors are maybe the attendants can help switch around seats..,?)

Iammags- I had a swollen nose as well in my armpit area heading into all of this. Never had one before. My mo said it's probably due to everything that's going on. And I don't think they removed it and it didn't come up as positive.

Chisandy/ so glad you're getting on with keeping your license alive. And I think the travel will do you good to get away from this cancer bubble that we all live in. I'm sorry about your friend, but she's so very lucky to have you and your dh to watch over her care. And the Qi Gong sounds great! I couldn't sleep last night and I used meditation that took me on a walk in the woods(my reiki master guides me through my favorite places).

Jclc- good luck on your rads tomorrow! Let us know how you did;)

Froggie/ I had the same reaction to anesthesia. I was in recovery for 5 hours and they wanted to keep me but I faked as best I could and went home late. Did you have an oncotype done to determine chemo or not? They sent mine out and I came back with a 27 score. Just found out that if I didn't start chemo, my chance of Mets and/or reoccurance is 27%. That with just Tamoxifan. But with chemo and Tamoxifan, it brought the risk down to 7%. That a much better number to live with.

Sloan/ Is it protocol for the markets to be done after treatments? My mo has a very similar view that Moondust posted... Try and avoid too many uneccesary tests that may pose more risks... More radiation, dyes, etc... But on the other hand if this is an early finding, that's better than later. The CA-125 is ovarian...? After chemo and Tamoxifan, I'm surprised by that.

MinnesotaLisa - you still need to make everything on your profile PUBLIC!!! Otherwise, it's just info for you and not shared with us. That's how it shows up under every single post you do. BTW, I was given a Dramamine pre-op to prevent anesthesia nausea. And it worked just fine. I also took one pain pill in recovery and then only Tylenol mostly to make sure I would sleep. My BIL and wife live in St Paul.

MLP3, Brit was talking about a Pre-check for the ER, not travelling. She waited around forever in the ER.

SunnyOne, good luck today finding out your results. Fingers and toes crossed that the news is fantastic!

HUGS!

thanks for the clarification Peggy! But wouldn't a tsa pre-check be nice for us at the airport..,?😉

Starting to feel lousy again. I wanted to get out but I'm just feeling like a big bag of yuck! Thank goodness my daughter is going to grab me a salad with hummus, avocado, carrots and homemade pickles. Sounds like my pregnancy diet

MLP3, yes it would be nice. Hope the tummy decides that it is okay to put food in it very soon.

HUGS!

Lisa, the reason you make all your profile stuff public is because we don't remember what you've written and the profile is always present. It's much better than your signature, honest. So make each thing public and that makes it much easier for us to help you with any questions you may have. I know you're not trying to hide anything but it is challenging not knowing this stuff each time you ask a question. Most of us use our signatures for something more personal (as you can tell). Thanks for sharing.

HUGS!

MLP3, So glad you managed lunch (and it settled okay). Your doggies ARE the best therapy. So comforting. I'm glad they are hanging around you and watching over you.

HUGS!

Molly50 wrote: "Thanks for the explanation Sunnyone. I figured that is what it was. Someone else out of another forum had it. I had all of my lymph nodes in the radiation field so I would guess that would just replace the WBR?"

Molly, it is hoped that Intraoperative Electron Radiation Treatment (IOERT) will eventually replace weeks of WBR but until long-term clinical trial results are in, they don't prescribe IOERT by itself. My surgeon and radiation onco still recommend following up IOERT with WBR.

The advantages of IOERT are: it's only one time and it's applied during surgery plus it doesn't do any damage to skin. The biggest advantage though is It is very effective in targeting the tissue where a majority of break-away cancer cells can be found because it's applied to the tumor bed while it's still open during surgery. It's been used in Europe for years and in the US for 5 years that I know of. Unfortunately, the expensive OR set up and radiation equipment just aren't available everywhere yet.

Drawback is that surgeon must make a bigger scar over the tumor, not the nipple-edge scar that many lumpectomies use.

Hugs to you MinnesotaLisa! Once you have a copy of your pathology report it will all make more sense to you. I was given a lot of that information right out of the gate so I am surprised you were not. Have you requested a copy of the path report? MLP, very sweet doggies! Thanks for the details Sunnyone!

Moondust - I have to concur with what you posted from Cancer.net - My MO said that I would have NO testing apart from regular mammos and u/s to check for any recurrence. Certainly no PET scans, absolutely nothing, the only way he said is if I came to him with prolonged unusual symptoms, then he'd do tests. He said that the testing is only as good as when you actually have cancer and unfortunately we havent evolved to the point of predicting. Uuugh. Said any scans etc., they just dont do.

Welcome aboard, Minnesota Lisa! I don’t want to throw a wet blanket on things, but regardless of whether your surgery is a mastectomy or a lumpectomy, as long as you are getting any lymph nodes removed (whether sentinel node biopsy or axillary node dissection), you are at risk for lymphedema. (I was told before surgery that with a sentinel node biopsy, your risk is less than 10%--but at my support group last week everyone had some degree of LE, except the woman awaiting her surgery). You probably won't get it, but the risk is lifelong and precautions need to be taken--and taken seriously. If you don’t want to wear the ugly pink plastic hospital-type bracelet they’ll give you, at least get a Medic-Alert bracelet (and not a tight one). Wear it on your operated arm and have it engraved with the LE precautions (lymphedema this arm, no needles or BP) and any other conditions such as drug allergies, a port, pacemaker, diabetes, etc. about which emergency and other medical personnel need to be aware. You could wear it as a neck tag or pendant--but it’ll be noticed sooner on your wrist. And if given the choice of emblem colors, always choose pink, since that’s what EMTs and nurses are trained to recognize for lymphedema. You’d be surprised by how many medical personnel are relatively ignorant about it and may insist on taking blood pressure, drawing blood, giving shots or starting IVs on that arm. Stand your ground!

What other precautions? Try to maintain a healthy body weight (easier said than done, I can vouch for that) because obesity is a risk factor. Avoid temperature extremes, especially heat. No hot showers, saunas, steam rooms, hot tubs. Get fitted for a sleeve and gauntlet or glove and wear it for all exercise involving your arm, as well as any time you’ll be at high altitude (including flying--in which case a glove is better for preventing finger swelling). Make other people carry your bags--or pick them up with your other arm. (A spinner-type suitcase that rolls alongside you with little effort is better for LE prevention than a two wheeler that must be pulled). Once you have healed from surgery and are given the OK to lift things with your arm, never lift anything heavier than 8 lbs (the weight of a gallon of milk) with it. Wear long sleeves and gardening gloves to garden. If you are cooking, use oven mitts. And if it’s your non-dominant hand, make sure you wear a finger guard or cut-proof glove on it when using a chef’s knife. Wear sunscreen or long sleeves, especially when driving in daylight. Make sure you take precautions against insect bites and pet scratches (if you have cats, have someone else keep their claws clipped). Any cuts or scratches must be washed immediately, and covered with antibiotic ointment and a bandage. Always have a filled antibiotic prescription with you. especially when you travel. Don’t wear tight jewelry (get rings re-sized if necessary) or constricting upper body clothing (other than your prescribed compression sleeve).

Why all these precautions? Any “insult” to your skin or muscles results in your body sending lymph fluid there to fight infection and cushion any structural soft tissue injuries. But if you don’t have the full complement of lymph nodes in your armpit, when the fluid is no longer necessary it can’t efficiently get back to the nodes to be processed for eventual excretion. It contains proteins, which if allowed to stagnate can clog the lymph vessels and lead to cellulitis (a serious infection that can be life-threatening.

It's nothing to make light of--once you have it, it's permanent--but it is manageable and can be prevented from progressing. (And you can get it decades later). I had a relatively small lumpectomy and only 4 nodes removed (2 sentinel, 2 “hangers-on,” all negative) and I still developed it.

I want to make a public apology to Minnesota_Lisa for harping on making her profile complete and public. I was unkind and there is no excuse.

HUGS!