Lumpectomy Lounge....let's talk!
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Susie, be sure to use Biotene for the dry mouth—you don’t want to develop dental problems on top of all the other chemo SEs. Can you get a prescription anti-nauseant, or some Emetrol OTC? Is medical marijuana legal in PA, and if so, will your MO sign a permit application? The THC-containing stuff (whether inhalant or edibles) has an appetite-enhancing effect (“the munchies”)—IIRC, CBD oil (over-the-counter) doesn’t work as well for that as it does for pain relief.
JKL, glad you like my adopted home town (there is so much new stuff to explore every year—I plan to hike “the 606” mid-city trail this week). The NoVA suburbs of DC ain’t exactly chopped liver, either—my sis lives on the border of Arlington & McLean; my niece was born at Fairfax Hospital and I love the hills and all the history—both Revolutionary & Civil War-eras. In 2011 I did a concert in Fredericksburg, a bit further out (Fauquier County) and the drive into the ‘burbs along the Rappahannock & other rivers was so tranquil & lovely. Two nights before New Year’s Eve we had dinner at the Inn at Little Washington—the drive was so scenic, the setting was beautiful, and (of course) the food & service were awesome. (Our first time eating there since 1994)!
Kim, glad chemo is treating you gently thus far. If you can, and it’s long enough, have you considered saving & gathering your hair when it starts falling out and either having it made into extensions (for when your hair starts growing back) or donated to Locks of Love?
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Peggy Yes I got the Biotene mouth rinse and spray. My Dr. Called me in a new Rx for a special toothpaste, Dentagel. Directions are to brush your teeth before going to bed but do not rinse off. This is to save your teeth. I do take the Zofran and Compazine for nausea. Usually I take the Zofran in the morning to keep my breakfast down. I'll take the Compazine in the afternoon of necessary.
Sandy I'm not sure if it's legal in Pa yet. It's funny that you said that because I saw my nephew today and he said to get it, although he uses it recreationally. I'm sure his intentions weren't as innocent as yours. I may have to check into it now.
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Susie, guess I'm lucky to live in a state where it is legal though I've never used it. Is medical marijuana legal? That might work. Ask your dr.
Sounds like you are trying everything. HUGS!!
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Hi all. Like LovingGrouches, haven't been on this thread for a little while but wanted to check in a let everyone know some good news. I'm doing great, just had my first 3-D mammogram, ultrasound, and also labs, saw surgeon, and oncologist today. All is clear, negative, normal, and awesome! I got my results within an hour of having both tests. I'm so thankful and relieved.
I'm feeling good, except have had moderate + psoriatic arthritis along with the skin inflammation but I'll take that over the BC any old day! I've been going to the pottery studio about 3-4 times a week, and am just loving life! Hair is growing back but is super short, and ridiculously curly! Oh well, it's hair, and it's easy to shampoo and go with the curls.
I am so in awe that several of you are still so great about supporting us and newbies. I love seeing the familiar names from a year ago. How fast the time has gone, while going through treatment, it seemed like forever. I read the posts, and just want to say a huge thank you to all of you who helped me from the beginning to now. Those who are just starting out, know that the time will come when you too can look back with wonder at just how strong we can be when it's needed. I'll keep trying to catch up and also check in more often, when I can scrap the clay off my hands! lol. Take care all, thinking good thoughts for all who are here regardless when you joined. Hugs to all. Dara
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Kim, so glad chemo is treating you good so far. Praying it continues that way.
Susie, praying tomorrow is better for you.
Dara, so glad you checked in and you are "normal"! Such a wonderful word!
JKL, welcome!
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Suzie - with weekly taxol, I had 2-3 bad days and then felt pretty good until about taxol 6 when the neuropathy got really painful. Try to get ahead of the constipation. I did probiotics and mirolax (generic works for me) daily and if I didn't feel cleaned out two days pre-chemo, took a laxative as well. I also realized that I wasn't really nauseous but just having a little acid reflex. Added nexium rather than take the oral anti-nausea medication doctor prescribed. A lot of women have found that claritin (again generic works) helps with the joint pain.
I would also encourage you to look for other threads that will help you. The whole BC site felt a little intimidating at first but I found as I scrolled around, I found the right places to be. My "starting chemo Feb. 2017" group has gotten very close. Someone set up a private Facebook account and we check in with each other regularly. Because we are on Facebook, we have been able to share pictures which I think has also made us closer.
Good luck. As you will read often, this is a place none of us wanted to be but we have found great support here.
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Gobsmacked - about the hormone therapy. Considering our geographical differences I'd say that had much to do with differences of those that are prescribed hormone therapy and those that are not. When I first started researching breast cancer there was a notable difference in numbers women that had bilateral mastectomy's just in the states. Certain regions tend to have more then others areas. Certainly we'd hope that we all would get the very best available worldwide and that would be consistent for all of us. Apparently it is not.
ML1209 - I can't help you with the radiation mapping. I had brachytherapy (internal radiation). Hopefully all went well today with your mapping. I'm glad others responded. Must admit Tappermom having to hold arms above for 45 minutes sounds rough. For my brachytherapy the CT scan was over and done in a matter of minutes each time.
Mustlovepoodles - ya'll are truly moving along on the house. You've got the focus.
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gobsmacked: I entered my details in the calculator and it give me 3% increase in survival rate so I'm really questioning the need for AIs since they aren't playing nicely with me. Then again, there was also all kinds of DCIS they found during surgery that didn't show up on mammogram or MRI. And after re-excision, it was still "close." I guess the radiation was supposed to take care of all that and the AIs are supposed to stop any growth if it didn't. But honestly, if the SEs on the AIs get any worse, I'm really going to question it.
MJ: I had the same issue with holding my arms over my head for 45 minutes. My shoulders were screaming and I needed help getting my arms down too. And of course, when you're supposed to hold absolutely still for 45 minutes, EVERYTHING on your body starts to itch.
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Susie, glad your first chemo tx went well...or relatively well. Sorry about the nausea. Hoping that you can be given something to combat that. I have had dry mouth after rads, which makes no sense, and I was amazed how much the Biotine helped.
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Susie, Sorry you are having so many issues with nausea/appetite. Mine were truly limited to days 4-5. My dry mouth is MUCH better, too. But Nystatin is packed away (the Rx mouth rinse). Biotene is it for me. I use at least 2x daily. Since my BFF arrived yesterday, we have eaten like you wouldn't believe. Just glad I can, as round 2 is Friday. We spent 5 hours in Chicago today, visiting Navy Pier and doing an architectural boat cruise. I walked more than 15,703 steps today according to my Fitbit with 97 active minutes. My nurse told me last week to walk 20-30 mins 4x weekly to stave off fatigue. I guess it is working so far, but I know it's early in the treatment process still. Hang in there!!
Sandy, My hair is short anway, so salvaging it wouldn't be enough to donate, based on what I believe their expections are for minimum donations. I got my hats today and tried on for my BFF. I briefly cried when I put the first one on, but at least she helped me know what looked good and what didn't. I haven't even lost any hair yet, but I know it's coming. I still think it will be quite the adjustment, but I will be ok. Thanks for thinking of me.0 -
Susie - my first round was rough as well. The nausea hit the day of the chemo, apparently that is not typical. I had on Thursday and they instructed me to start the zofran on Saturday morning no matter what and then continue on shedule thru Monday. Well, Thursday evening it hit, kept telling myself it was in my head because the premeds should still be in my system. But, an hour later - no denying it. Took the zofran and it did nothing, my husband called MO and she said go ahead and take compazine. Got it under control and then set alarm and alternated the two. The zofran would wear off before time for another dose, so had to take the compazine. Since I knew that it would hit early, I took a zofran a few hours after the chemo for the next rounds, by doing that the nausea never started up anymore. If you can keep it from hitting, things go much better. Hard to get under control once it starts. That worked for me ..... I did sleep a good bit on days 1 thru 3, but by day 4 things were much better and kept getting better. I would bet you are on the upswing. And same with me as far as appetite .... had none and lost weight. Everything made me gag, even the smells. Much like when I was pregnant. I did find things that sounded good as I went along though .... crazy stuff like spring rolls, strawberry pretzel salad .... not things I typically eat. When did nausea hit this time? Start zofran earlier and take in schedule .... get ahead of it and you may do better next round. Believing that for you! Biotene is the best ...... never knew you could get so dry. The Biotene toothpaste is good as well. My dentist also gave me fluoride to apply the nigt before each chemo round. Her mother is going thru chemo as well, so she knew some things that would be helpful. Praying your 2nd round will be much better!
Had my mapping for rads today. Took about 40 minutes ..... not bad at all.
Poodles - I need you to come to my house .... you have been busy!
Hugs all around!
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Dara, yay for “normal.” Normal is no longer boring—it is a blessing!
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hi everyone,
how did you / do you care for you scars?
i just had my lumpectomy yesterday -- everything went very well but i have a sizeable scar as the surgeon took out both the tumor and sentinel lymph node through the same incision. what can i do to make sure it heals well? the scar from my port is still very red despite being 7 months old now and i am hoping i can do things differently this time around.
i heard vitamin E helps? any other tips?
thank you!
stephanie
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Poodles, Sorry you've had to take such a rough road... We all do what we need to do, the finality and reality don't really hit until it's all over and we have time to register what's happened..
Barbmak, I will be getting my second Prolia shot tomorrow and so far I haven't had anything serious happen..
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((Poodles)) I hope soon you will have some rest and peace! Stephanie, I use a combination of coconut oil and calendula cream on my scars. It takes a while but the scars stay soft and eventually get lighter. Some ladies use scar patches on their skin or scar cream. Since my skin was radiated as well I liked how much softer my skin was using the above combo.
Dara, great news! Good to hear from you.
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After my hysterectomy nine years ago, I ran into one of my nurses in the grocery store. When she asked me how I was doing, I said my large scar was nothing me - it was very itchy. She recommended Palmer's cocoa butter; I got out of line, grabbed a jar and started applying it. It helped. After I'm done with rads, I may use it on my new scars!
MJ
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When I last saw my MO she told me that I would most likely get a reoccurrence of BC when I was in my 80's. This really concerned me as where did she get that info? and if that was the case would it have been better if I had had a mastectomy? I just stared at her and never said a thing. It has been bothering me since then.
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Wow, ndgrrl. I'm shocked your MO would say that!
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Calm down, ndgrrl. EIGHTIES? How do you know that a heart attack or stroke might not have gotten you first by then? They're the leading cause of death in America. And a recurrence at that age would likely not kill you—it'd grow slowly and you'd die of old age first. The average life expectancy in America for a 44-yr-old woman? 83.3 yrs. old (and that's even without breast cancer). You're only 44! You really think “you probably have only 40 years to live" or “your life is half-over" is something to get depressed about? Get on with your nice long life.
Mastectomy? Nope. If you get a recurrence, it will have been that your ER+ tumor had sent out micromets even before it was diagnosed, much less removed; and that those micromets will have lain dormant for decades before they develop estrogen-independence and “wake up" (most likely in the bones, the slowest-growing area of metastases and the easiest to retard or stop their progress). This is why mets can happen in women who have thrown everything in the treatment arsenal—mastectomy, rads, chemo, anti-estrogen therapy—at their tumors.
Your MO probably is a bit short in the people-skills/bedside-manner department, and probably shouldn't have said what she was thinking (but she was perfectly correct & honest in thinking it; and it was not a message that should have rattled you). Don’t think about “recurrence by your 80s.” Think instead of “overall survival.” Mastectomy does NOT lengthen the latter.
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ChiSandy, do you know anything about mo's now using Zometa and meds like it to prevent Mets in the bones down the road? My former MO was gung ho, all for Zometa treatments every 6 months for 3 yrs for prevention. He said there was a promising new study. I would love to see the study.My new MO when I asked about the Zometa was more like meh its up to you.
My new MO also told me I did not need to take anti-hormonal meds anymore if I did not want to. I am only 3.5 yrs on them. She told me stress reduction would benefit me as much. She told me to learn to meditate. She is more like a natural path Dr.
Her telling me most likely I woukd get a reaccurance in my 80's scared me. All I thought was its hard enough fighting and financing this in my 40's how will I manage when elderly. I also saw my sister, mother and baby niece pass away from cancer, that is something I do not wish to even want to envision...
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Stephanie: I had two separate scars and they both healed up beautifully, hardly noticeable until I had a resection and then rads. Now they are very dark reddish brown, and I'm hoping that they calm down.
Tappermom: I've been using Palmer's for over a year. Works great on dry skin. I stopped when all this surgery and rads occured bevause I was told not to use anything. Once the skin reaction lets up, I will probably try coconut oil with lavender as I've had great success with lavender healing burns in the past. I'm just a little bit afraid to use it on radiated skin right now.
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Ditching the anti-hormonals after only 3-1/2 yrs., especially so young? Bad idea. See this article from the Journal of Clinical Oncology:
http://www.clinicaloncology.com/Breast-Cancer/Arti...
It says that either starting your anti-hormonals with AIs or switching to them after Tamoxifen, and continuing them for 5 or more yrs significantly delays mets!
Also, it is now settled science that either Zometa or Prolia not only strengthens bones and even possibly prevents weakening, but can also prevent or delay the onset of bone mets; and if bone mets occur, retard or even halt their progress. (I started with Zometa but I don't do well with I.V.s so I switched to Prolia). Yes, meditation is great, but as a tool in your treatment arsenal. A truly integrative MO (one who embraces standard medical care and alternative therapies strictly as adjuncts) is good. A “naturopath" (which I assume is what you were trying to say) MO raises huge red flags, IMHO. Get another MO if you possibly can. Your new one seems not just insensitive but also behind the curve when it comes to standard-of-care.
And remember that congestive heart failure, chronic obstructive pulmonary disease, Alzheimer's, and other fun stuff that can occur in old age cause just as long and painful declines and are just as expensive to deal with as metastatic cancer that first crops up that late. Paradoxically, the bone mets are usually easier and less painful to treat than many if not most non-cancer cardiovascular, pulmonary, and neurological long-term and ultimately fatal diseases of old age. My mom had “cor pulmonale:" congestive heart failure caused by COPD. She died at 85-1/2, and it was just as difficult to deal with than cancer would have been.
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ndgrrl - sorry your MO said that. We do not need any more negative thoughts in our heads than are already there. But to live to 80 is a great life ... I'll be thrilled to see that birthday!
When did you start using these things on your scars? I was waiting until aftet radiation.
Dara - yay for good news and thanks for sharing! Gives us hope!
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I never felt the need to use anything on my lx or SNB scars, maybe because I hardly ever get naked anymore except to shower or dress. But when I was recovering from my knee replacement surgeries (each of which produced a 4” zipper-esque scar from bottom of femur to top of tibia), I found that both vitamin E oil and Mederma worked. Don’t bother buying vitamin E oil—pricey and rather gooey. Puncture a Vit. E capsule and squeeze it on tho the skin, then massage it in
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I was using Bio-Oil on and off for a while on my scars... also on my nipple, which was a bit darker and harder after radiation. I'm not sure it did much, but it helped soften up the skin a little... maybe! I also tried the silicone strips that you put over the scars. My scars were not long, but red/purple and not flat, so I figured whatever might help a little, I'd give it a try.
I don't really know if any of it worked, or if it's just time, but my skin has gradually lightened on my nipple and breast (I had some freckles from the radiation), and my scars are finally getting a little less noticeable... and maybe I'm just getting used to them and don't really care any more? But I'm not treating them with much these days... I might try the silicone strips again at some point, since I still have them lying around!
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I just hit the 2 Years past surgery point today, when I went in for my bilateral mammogram. I wasn't sure how they judged the 2 Years from, but apparently it's from the surgery!
And I found out why I wasn't getting any US or MRI in addition to the mammograms (due to dense breasts--and because mammos didn't find my tumor) because my BS/Breast Center believes that those don't work well while the breast is healing up over the first 2 years. (They didn't tell me why they didn't want me to get those 6 months before, when my Oncologist suggested getting them done.)
The nurse practitioner was the one with all the info! She did the initial exam before my BS came in to check.
So, I'm now back to once a year mammograms (another thing I had no idea about, but which the NP just told me), but I've got an MRI scheduled for 6 months. That's a relief, because I do worry that mammograms might not catch everything. And apparently my BS doesn't need to see me any more--just the NP. Good to know. (He's fantastic, but he's left my insurance plan! agh.)
It's great to reach this stage! I hope you all are getting through all this stuff as well as possible!
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I have a question... has anyone experience the cancer breast turning red... I woke up this morning and it looked like a severe sunburn, even underneath... I will be seeing the nurse practitioner this morning, but this is a first...
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Radiation damage, since it occurs from the inside out, can be delayed, but not this long. Contact dermatitis? Call your BS &/or your derm
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I didn't do anything with my lumpectomy scar either. My BS cleared my margins for both IDC & DCIS and removed 5 nodes through the same incision. My scar is about 2 1/2 " long and is right where the armpit and breast meet. When I raise my arm, it looks like a shadow. H says the only reason he notices it is because he knows it's there.
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Thanks Sandy
I saw the dr. and its acute mastitis.. may have to go to the hospital. they want me to have 2 treatments a day for 4-5 days and it's vancomycin..found i'm allergic
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Good luck, Judy! Are you saying you’re allergic to Vancomycin? If so, there are some other super-antibiotics that can work. Vanco is usually given I.V., but I believe the newer stuff is available in pill form. What do they think is the source of the infection? (Have they been able to culture anything)?
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