Lumpectomy Lounge....let's talk!
Comments
-
NC—shingles? Ouch! Glad I got the shot before my bc dx. You might want to ask about something like gabapentin or Lyrica if it gets painful, since shingles pain comes from nerve inflammation.
ML1209, that trunk & ab soreness is called “scoline syndrome.” (Nobody had warned me about it, didn’t even recall reading about it in Susan Love’s book—had to look it up online when it hit me, and confirm it with the NP). Just after you lose consciousness, in order to be able to intubate you (and keep you from moving while on the table), they give you an I.V. push of succinylcholine (“scoline”), a powerful muscle relaxant/paralytic. But just before your muscles relax, they first contract suddenly and intensely for an instant. It’s no coincidence it feels just like you’ve overdone it at the gym, and that you don’t feel it until several hours to a day post-op: it’s DOMS, or delayed-onset muscle soreness, just like you feel the day after beginning a strength training regimen or kicking it up several notches. (That’s why you shouldn’t strength-train on consecutive days, so your muscles can heal in between). Exactly the same phenomenon and physiological process, except in the gym it’s the weights and in the OR it’s the scoline that’s the culprit.
Poodles, what a relief about respite care for Christian! And that you’re going to be able to present options to your mom for her care and residence.
Trish, yay for the clean bill of health!
Nancy, funny how protocols differ from state to state, region to region and even city to city. Was your BS a breast cancer surgeon, or a general surgeon? If the latter, they often hand off patients to MOs for all future care, including breast exams & mammos.
0 -
NC, shingles, goodness gracious! I'm so sorry! I hope they can give you something to give you relief! Gentle hugs (())
0 -
NC, sorry about the shingles. I hope they started you immediately on antiviral therapy. I am surprised your MO didn't have you get the vaccine before chemo. I see that mentioned on chemo threads. Traci, congratulations on your good check up!! Peggy, I know you love your glasses of wine. I doubt this study will change that and of course different studies seem to conflict with each other. Wine and breast cancer
0 -
Everybody tells me I need to get the shingles shot. What if I've never had chicken pox?
0 -
~Nancy~
I have noticed that everyone seems to have a different schedule for seeing their docs, too.
My BS says she will see me every six months for 5 years and then yearly after that (for the rest of my life or until she retires?). She also orders my mammograms now and doesn't see a need for me to be seeing my PCP or the RO anymore. She says she can handle all that for me. I am not giving up my PCP.
The RO wants to see me every six months for the next four years because he is watching for recurrence. Then we will be done.
MO has me for 5 years. He sees me every three months for now. I am still having a few troubling side effects from the letrozole and he says he will keep the three month schedule until he feels I have stabilized on the meds, then we will go to six months until the 5 years have finished. Then I guess I won't see him anymore.
There seems to be a conflict about who is 'in charge' of my care. BS says it's her, MO just laughs and says okay she can have that, but he is actually the doctor of record. I don't really care about any of that. She is controlling, but an excellent surgeon. Even the MO says she is the one I want if I ever need more breast surgery. It just bothers me that she can be so bossy!
0 -
My BS or her PA plans to see me every 6 months for five years. My Mo also plans to see me every 6 months for five years.
0 -
ChiSandy: My surgeon is a general surgeon, one of THE best in the area. I was lucky to be able to get a surgery time with him within 3 weeks of diagnosis, and only 2 weeks after the first surgery for the re-excision. My RO and tech were amazed at how well I'd healed and how good my incision scars looked considering I'd had 2 surgeries. I'm feeling blessed! So, I guess that's why I have an MO, who also comes highly recommended.
NC: I am so sorry you have shingles! I've heard stories about them from others, but have never had them. My doctor keeps bugging me to get the vaccination, but I'm hesitant.
Velvet:: I've never had chicken pox either, but was exposed to the family who lived next door to us when all 6 kids had them at the same time! I must have a natural immunity. I can see why you'd be confused about your docs! They're all fighting over you, you should feel honored. LOL! My MO is going to be engineering my treatments and followups for the cancer. I'll go to my PCP for all my other health issues/checkups. I'm assuming one rad is done, that I won't see the RO again, except for followup for any SEs. Can I ask what your SEs are with the letrozole? You can private message me if that would work for you.
I guess I don't understand why the BS and the MO would need to see someone every 6 months for 5 years. Aren't they doing/looking for the same things???
0 -
My RO kicked me loose right after rads finished. My BS sees me every 5 months now. MO every 4 months. MO does bloodwork every appointment and is in charge of ordering my Dexascan. BS is more about watching for recurrence or new cancer. She's amazing and I don't want to give her up. MO I am meh about. He gives me about 2 minutes of his time.
0 -
~Nancy~, ~Molly~
As I said, BS now orders mammograms;that's it. RO seems concerned about pain I still have in the breast (BS blows it off). MO orders & monitors my letrozole. I know this about the BS & RO: They worked together at the Breast Center here. He (RO) is now the medical director of the Cancer Center I go to and is still affiliated with the Breast Center. She (BS) was the surgeon at the Breast Center until maybe 5 or 6 years ago, now she is with a surgical group. She is ranked as one of the top three breast specialists in the area. They both work for the same hospital system and are located at the same campus/plant. He seems to be aware of her feelings toward him and doesn't care. He was actually surprised that she recommended him to me. The MO is good. He knows the surgeon well, is aware of the RO,but doesn't seem to know him well. I don't think they talk to each other, though. All are fine with PCP monitoring labs because she has been with me for many years; RO is okay with BS ordering mammograms as long as he gets a copy (which I see to); MO has PCP order bone density scans and liver enzymes. We are encouraged to take an active role in our medical care and I guess I am doing just that because I keep my docs in the loop.
My SEs on letrozole seem to be pretty mild when I read what some of the ladies here go through. I have moderate joint pain in my fingers and knees-glucosamine chondroitin, extended relief acetaminophen and extra D3 are making it manageable. I just got the results back from my bone density scan and it is showing a worsening of the osteopenia in my left hip, so the MO may increase the calcium w/D3 capsules and the extra D3 (both he & PCP have suggested 5000 iu of D3). The calcium constipates me, so I drink 1/2 cup apple juice & 1/2 cup prune juice mixed together & heated in microwave every other day and lots of water and tea. My finger nails are brittle and peel easily. MO says that is not from letrozole, but I disagree. I used to have long hard nails. Now they barely grow.
I am not complaining. In spite of everything, I feel really good health wise and am glad I heal quickly and appear to tolerate medications well. I am just so grateful that my cancers were small and caught early.
0 -
My manicurist says that all her clients who have had cancer had begun to have weak and thin nails even before diagnosis, so she's convinced that not only is my bc largely to blame for the state of my nails but that I probably had it for quite some time before it finally appeared on a mammogram. I know that my L hand nails had been fine (I always cut them short) until 2008, when an idiot tech in a mall "nail mill" did not understand that I wanted only polish, not acrylics, and she began using a Dremel grinder on them to prepare them for bonding before I stopped her. (Acrylics—which are bad for your nails anyway because they stay on for months—on nails that short looked like Chiclets). And my R hand nails never split longitudinally—only wore notches in the edge from guitar strings or tore from the side, no matter how much gelatin I drank or hardener I used—until I began getting acrylics on them.
I finally switched to non-acrylic viscous self-leveling gels in pots (as opposed to the "gels" that are acrylics mixed from powder & solvent, patted on & sculpted, then given a UV coating before exposing them to UV light so they dry transparent) and eventually just "gelish"-type "no-chip manicure" polish cured by LED, not UV. My manicurist also sometimes reinforces my thumb & index nails (my "picking" nails when I play) with a small patch at the edge of where they tend to split. My gel polish gets soaked off every manicure, and my nails get to breathe "naked" for a little while. Acrylics just get "filled" when new nail growth appears at the "moon" of the nail base, and get removed only if they crack or lift—and removing them is tedious and traumatic, as they don't dissolve as readily as true gels or gel polish (which are gently scraped & wiped off once dissolved). When gel polish "lifts" it is pliable and can be either glued back down after a thorough hand-washing & drying, or removed and replaced; when an acrylic lifts, because it isn't pliable water gets in and fungus can grow.
As for LE danger, my manicurist knows not to cut or file any skin (including cuticles) on my R hand and to massage gently, only upward towards my lymph glands. I'm lucky to be able to afford a salon where everyone speaks good English as a first or second languages and is individually state-licensed. My manicurist is the owner. She came from Vietnam as a baby and spoke English, Cantonese and French at home; her sister was born here. No fumes, masks or power tools at the salon; all the tools are either disposed of or autoclaved, including the stainless steel pedicure bowls. I'm amused to read ignorant Yelp reviews that downgrade the place for being expensive, not offering acrylics, not shaving calluses, and using sterilized bowls and plain cushioned sofa-benches instead of back-massaging pedicure chairs with whirlpool footbaths. Oh, and refusing to do pedis on people with toenail fungus, telling them to go see a podiatrist instead.
0 -
I really lucked out having a major cancer treatment center (NorthShore Evanston Hospital Kellogg Cancer Center), including a dedicated Center for Breast Health, part of the University of Chicago Medical School and Mayo Clinic-affiliated, just five miles up the street from me. Been getting my mammos there for 10 years (and at their affiliates—including Nordstrom!—for a decade before that). My BS does breast cancer surgery only—and specializes in both breast-conserving surgery and nipple-sparing mastectomy. My RO participated in the study expanding the indications for accelerated partial breast radiation. My MO treats only breast and gynecological cancers and has collaborated in various research projects. There is an on-site Genetic Counseling dept. The founder of LANA is on staff there and is my LE specialist. And my derm, orthopod, and gyne are all part of the NorthShore system. My PCP is part of Presence (formerly Resurrection) Health, and has been my family’s PCP for over a decade; he sends all his patients to NorthShore hospitals when they need specialists. Presence and NorthShore participate in the same medical records network and both their patient portals coordinate—so any treatment or Rx I get at NorthShore shows up in my Presence portal and vice versa.
0 -
Velvet: I don't think I could keep all those doctors straight let alone on their toes! :-) My fingernails are growing like crazy since I started rubbing them in every night with lavender and frankincense essential oils diluted with almond oil. I also take a Hair, Skin and Nails supplement (biotin) because I've had issues with hair loss and brittle nails. Seems to help.
ChiSandy: Your hospital system sounds like mine...I love that ALL my information is available to any doctor that I see so that I don't have to repeat myself every time I go. And one doctor can see that another doctor has already ordered something, or that my MO could get the results of my pathology report before my BS called me with them. They're all part of the ProHealth system which is now affiliated with the University of Wisconsin medical school as well. I also have an oncology nurse navigator. She was actually the person that made all the appontments for me when I was first diagnosed...seeing the surgeon and the MO, and she came to see me as I was waiting to go to surgery both times too. She calls periodically to see how I'm doing. feel as though I'm in good hands.
0 -
tbalding - I'm impressed that you continued through with Zumba during radiation treatment. I understand they say it is the best thing to continue being active. I could not do it, but then I had the brachytherapy and OMG bouncing around from just walking was uncomfortable . . . so definitely didn't want to consider Zumba.
LoveT - Welcome to the site. I've not read anyone describing their having Radial Scar/LCIS but from what I read outside briefly I would imagine that your BS has ordered a biopsy of some sort. Please keep us informed.
KimPossible - glad to hear you had an up day yesterday . . . I hope it continues. Humor for me is medicine. So hope you continue having your sense of humor. To me the whole process so far has been rather humbling and my sense of humor with my medical team just seems to kill the elephant in the room sometimes.
VelvetPoppy - Glad to hear your followup appt. went well . . even if your BS doesn't care for your radiologist much. Knock on wood, I've been real fortunate that my RO raved over my BS work (for the brachytherapy).
I had my final treatment via Brachytherapy today. YEAH! I had a lot of concern over the removal, which turned out to be uneventful. The removal brought zero discomfort. And must admit I feel truly lucky to have had a good team of people that worked with me through this process. This weekend I plan to write the cancer center to let them know of how great their employees are to their patients.
0 -
ChiSandy - I remember you sharing abt that syndrome once before. Didn't dawn on me until now. How long does this last? So hard to get comfortable to sleep because of it.
Gardennerd- congrats on last day of brachytherapy!!
And talking about nails .... my two big toenails are just barely hanging on. Thanks to taxol. Ugh.
0 -
Scoline syndrome usually begins to resolve on the fourth post-op day. I agree about how tough it is to sleep with it—I wanted to scream every time I rolled over or had to get up from the bed. It fades pretty quickly after that.
0 -
ML, So thankful your surgery went well. You have surely had your share of stress. I spoke to another neighbor yesterday whose sister had BC 15 years ago, now it's in the other. She lost her husband to colon cancer. I am truly wondering how much of BC is stress-induced. As far as the Oncotyping, I feel sure my BS and ONC are figuring that all out. I see ONC on Wed, and my BS said they have already been in contact. Will be sure to update once I know more.
NC, I am beyond sorry about the shingles. Never in my mind would I think about that occuring. As I say, I am truly trying to not read too much. Good to know, in case I need to speak with my ONC. I don't mind learning from the boards, because this is as real to me as it gets.
Sandy, I get pedicures but not manis. I keep my nails short naturally, but they are strong as ever. No warning signs there for me. I am also in the NorthShore network. I wouldn't mind messaging you who my BS and MO are privately.
PRAISE REPORT: I had my bone/CT scans yesterday, because of the 6/7 lymph nodes. My amazing BS asked me if I wanted to know results if she was able to get yesterday or just wait until after the holidays. I said I wanted to know ASAP. Before I left, she let me know the CT scan results were clear. DH and I cried. Within an hour of returning home, and me pacing the floor attempting to relax, her nurse called me and I could hear a big smile in her voice that the bone scan results were clear, too. Those were some happy tears and good phone calls/texts to make. I was really concerned, because of all the unexpected outcomes thus far with this bad boob. She got clear margins removing my 3.6 x 3.0 x 2.0 cm tumor. One year post a normal mammo and ABUS, and this invades my body. I am still trying to process that!
I looked at my scarring as she removed all the gauzes and tape, and I was very pleasantly surprised how it looks, as was she, though I am still swollen. I asked if I should expect more diveting, but honestly, I cannot complain because the tumor is gone and so is the surgical bra! Buh-bye! My arm pit has been so much more sore since BS removed everything. I had to pack some ice to it last night. BS said I could shave and did not have any concerns about that for me. I will do so carefully, just to rid myself of the crazy growth, but I will likely just do every other day or so. I am typically an every day shaver. I don't like that prickly feeling.
My BS said she still may take more lymph nodes, (I pray not unless it is absolutely necessary), as she has been in contact with MO about my treatment plan. I think some of it was hinging on scan results. She did say I can expect 6 months of chemo, which I surely wasn't expecting. I do know my first DH did really well with his oral chemo, but this will be not be oral. She said to expect treatment every 2 weeks. So, I am just going to wait until Wed to get the facts. Am curious if RADS will be in conjunction with chemo or post - as that is far out. I will just take each step as it comes. BS did say they typically could get chemo started possibly week after next?! if no more lymph node surgery.
I wish each of you a wonderful holiday weekend. I am taking it pretty easy, but I do plan on getting to church tomorrow and getting back in the choir and hitting a local farmer's market today! AND, YES, I am going for a much-needed haircut today (my hairdresser last saw me before mammo and has NO idea how my life has changed). Won't this make good beauty shop talk! One more good cut for the road...
0 -
Kim, YES! on your good test results. My DIL had colon cancer and got chemo. Every session she would tell those drugs to KILL CANCER. She had the most positive attitude of anyone I've ever met. She even had her niece and nephew come over for a party to shave off her hair. That made it less stressful than it might have been. She said chemo, while not fun, is doable. Good luck.
Molly, I have no intention of giving up my wine! I didn't drink much at all (a few times a year) for most of my life and it didn't seem to matter since I got BC anyway. I'm still of the opinion that stress is a much bigger factor in my BC than anything else. I know you get that.
Poodles, so happy that you have found great respite care for Christian. Good luck this weekend with your mom! I suspect you'll need it and the patience of a saint.
Have a wonderful Memorial Day weekend all and remember those who made it possible.
HUGS!
0 -
Kim, wonderful news! Prayers answered! Hope you have a relaxing weekend.
0 -
Kim - Yeah for your good news. Wishing you a relaxing, uplifting weekend.
Peggy - Also a believer in stress contributing to C and not willing to give up the occasional adult beverage. All things in moderation.
0 -
NC, I didn't even have chemo (radiation only, which ended March 1st), and I got nailed with shingles this week. I had it when I was twelve. i guess my immune system is still on the fritz! Just piling insult upon injury..... It feels like my body has an agenda of its own.
Carrie
0 -
Fotheringay - Hope the shingles are not too bad. I had a small spot of shingles on my back while pregnant. Healing thoughts going out to you.
0 -
Fotheringay - so sorry about those shingles!
NC - hope you are feeling better.
My husband had them and it was so painful - I am so sorry.
Sandy- thank you. I am feeling better today. Glad to hear this won't last long. Sure would be nice if they gave you a heads up.
Kim - yes!!! I am thrilled to hear this news. I know what a huge relief this good news is for you. I did chemo every 2 weeks for 8 cycles. It is crazy though how it seems everyone is treated differently. You are so right to leave the deep thinking to your doctors. Will pray that the chemo destroys every single yucky cell and leaves the good cells and organs alone. They told me my hair would start really coming out on day 14 and they were right. I wanted to feel in control of that I guess so went ahead and had my DH cut my hair really short. Happy to say I have a good bit coming back in now. Unfortunately I think my days of not shaving my legs are coming to an end ha!
PontiacPeggy - we did the same with my son when he was in treatment. He loved the Power Rangers so we told him the chemo was sending in the Power Rangers to knock out the bad guys.
To all ladies- how long did you wear your surgical bra? They only gave me the one, but I have some good sports bras. Wondering if I can put one of those on. I don't see my BSO until 6/5. And can we put deodorant on??? I have not so far, just wondering. It seems like probably not a good idea.
Hope everyone has a great weekend!!
0 -
ML, Thanks for the chemo info. Glad I got my hair cut, because it needed it, but I told her I may not need another for a while. She seemed so sad to hear my news, but I tried to joke and pump her up. I just want to be my "normal" self as much as humanly possible. Day 14? Wow. That's interesting.
I got one surgical bra - the one I wore home from surgery, and I did tell BS yesterday to please give an extra to patients if you expect us to wear 24/7 minus shower time only for a week. It felt just gross by yesterday. I even washed it twice in quick cycle, or I could not have stood myself. She allowed me to stop wearing it yesterday, and I had taken my own bra to the appt. I don't feel as supported, though, in my own. So, the surgical bra certainly serves a purpose. I went without one last night, but I realized I probably should have worn mine under my pjs. I think a bit more supportive without being constrictive is better for now.
I did not wear any deodorant on SNB side until today. She told me I could shave, but that did not work! I am still a bit numb there, so I was afraid I wouldn't be able to tell if I had too much pressure - and I was using a pretty dull razor. She did tell me to avoid any lotions in the surgical areas for another week. That's doable.
You are doing great! Hang in there!
0 -
ML, I think I wore mine for about a week. I saw my BS a week after surgery. I'd say you could switch as long as comfortable and doesn't rub surgical areas. Are the sports bras front close? I think it would be difficult to put on & take off the over the head kind. I don't remember when I started using deodorant again on bad side. I was worried about SNB incision so I know I waited a while.
0 -
Thanks tbalding and Kim. It would be nice if they gave you two. I want to wash mine as well. I have slept in a bra ever since I had my port put in. Just needed that support so it didn't pull. Mine do zip in the front.
Kim - the crazy thing to me is that my eyebrows and eyelashes didn't come out until about two weeks after I completed chemo. So now I have hair coming in on my head, but no eyebrows or eyelashes
. If you think you will want a wig ... go ahead and get now. Easier for them to match your hair color. I did get one, but honestly hats and scarves felt better. I am thankful I still see my hairdresser. She cuts my husband and my children as well. My son has to have his cut just right so the scar on the back of his head is covered. He has hair but very thin where he had radiation. She knows just how to cut it. Also, see your dentist and have teeth cleaned and any work you might need before chemo. My dentist gave me flouride treatments to do at home prior to each treatment. The first treatment left my teeth so sensitive. Once I started doing the flouride treatment it was so much better. My dentisit said the key to keeping mouth sores away is keeping your mouth moist. Sorry if too much info, but thankful others who had walked in my shoes shared that with me because I wasn't thinking clear and would have never thought to do any of that. You may already be thinking of these things. Understand about just needing normal!!Poodles- so happy to hear things are falling into place for Christian.
Blessings to each of you!
0 -
NC--I had a light case of shingles right after my BC treatments--had had the shingles vaccine about 4-5 years before. The doctor said that was why my case was light.... took the prescribed medication and it was gone in about 3 weeks.
0 -
~Ladies~
I didn't get a surgical bra. Somehow they managed to put my own bra back on me. I was told to wear a front hooking bra to the hospital the day of surgery, but I couldn't find one large enough to fit me locally and I didn't have time to order one. The BS told me they'd figure it out and they must have because I went into surgery with the bra off and woke up with it on.
I wasn't allowed to wear deodorant until I saw the BS ten days after surgery. Shaving was not allowed until then either, and then only electric. That went for radiation, too. I didn't - and still don't - own an electric razor, but shaving never became a problem because I don't need to shave under my arms anymore. The last time I shaved was the night before surgery.
0 -
Kim, congratulations on the clear scans. Forthingay, sorry about the shingles. Peggy, I know exactly what you mean and I would not give up the wine either if I were you. Hugs everyone.
0 -
ML: I got two surgical bras because I had two surgeries. But for some reason, they gave me a L instead of XL after the first and that one was just way too tight. I have since bought 2 Hanes Cooling Comfort bras and just got a Fruit of the Loom sports bra on sale CHEAP on Amazon. I haven't felt the need to use them yet. I used the surgical bra for quite a long time, especially at night, just because it was more comfortable. I'm currently wearing the bras I wore before surgery. I have had 3 radiation treatments and all is well. I know what you mean about the surgical bra getting stinky!!! I hand washed mine and then threw it in the dryer once or twice a week.
Kim: Praise the Lord! So glad that your scans were all negative.
I have a question for those of you who have Stage 1 BC. Do you find that people are cavalier about it, treating it as "nothing" and telling you "oh that's nothing to worry about"? I've had a couple people do that and it's kind of off-putting. Of course, it's the best cancer to have, but it's still CANCER. I still have to undergo treatment. I still worried. I still had to have surgery...two in my case. I thought of it when someone mentioned hairdressers, because that's the way mine treated me. She has a sister with brain cancer, so I'm sure my BC is "nothing" in comparison, but I felt "less than" for lack of a better word.
0 -
Nancy - I've not shared out details too much. And when I do I find that most are uninformed. Generally even confused. First question is are you going to lose your hair? I've found myself awkwardly feeling belittled by a friend that had bilateral mastectomy. I honestly don't believe she meant to sound ugly but it felt that way several times. She practically told me she wished I had gotten a mastectomy and couldn't understand why I did not and she did. I can only justify her statement that she was still grieving the loss of her breasts, along with the treatments she is unfortunately having to go through.
I tend to go with the less you know, the less I have to answer questions. And the less I have to deal with awkward conversation. If by chance I have someone truly asking questions, I will try to share my experience but otherwise no details.
0
