Lumpectomy Lounge....let's talk!
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Welcome back Elizabeth! Molly, I like your perspective with food! Last night, I really wanted a spicy sandwich called "The Gabagool" from an Italian deli nearby. It has cappacolla and cheese which I love! Unfortunately, it seems my tastebuds have headed south for the winter, and I can't tell anything I'm eating! My tongue really hurts and has deep cracks in it and then almost raw areas. It's weird because my mind tells me what something should taste like, but then nothing! I'm still rinsing 6-8 times a day with warm salt water. I CAN eat and drink, just have no flavor with anything! My DH got some frozen yogurt which I thought would be really good on my tongue. I felt good but couldn't tell without looking what flavor it was. Bummer. MO said to let them know if it got so bad I couldn't eat or drink. At least no nausea! I"m going to a jewelry making class today with a couple of friends and really looking forward to it. I'll share what I make when I get back. Poodles, isn't it weird where the treatment affects? One person said she had terrible pain in her big toe!
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Dara, I had similar issues with my taste buds. I could taste some things, but the texture and taste was weird. Like, my cereal looked great, but it had the texture of fresh cut grass. And meat tasted and had the texture of paper clips. About the only thing that remained unchanged was pizza. Thankfully, the taste thing got better somewhere around week 3 after chemo. So for 12 weeks of chemo, I had about 14-20 days of relatively normal-tasting food. I don't think my taste buds straightened out until about 6 weeks PFC.
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After my second recent surgery nothing tasted right including water. Water tasted like freezer burn, ick. I forced it down but sipped on Sprite in between and I don't drink soda! The only thing I could eat was toast and bananas. Not exactly the best food for constipation but you do what you can to choke down meds. I am pretty much back to normal now.
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welcome back Elizabeth. I found the CC here so wonderful and made all my fears go away. Glad you day went well
Dara I had sores in my mouth and had to use magic mouthwash at times. They make it painful to eat anything. Since your mouth is so sore try to stick to soft food. I couldn't eat anything like buns or crackers as I found they would make tiny cuts which were painful. I used biotene mouthwash, salt water and magic mouthwash. The magic mouthwash is a prescription .
Have my Hercepton on Tuesday. 3 weeks post rads my son told me last night I am looking a lot better. Better colour and more back to my old self. Glad to hear that! It's hard to adjust to lack of hair and weight gain so hearing that made me feel better.
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Happy Weekend, Ladies!
Elizabeth, Hope to hear all about your trip to Fiji and that it was all you hoped. Glad you made it through your first chemo. I can imagine how scary that first one is since you have no idea of what to expect.
Trish, skip the diet, just enjoy the reunion!
Dara, pooh on food not tasting. How disappointing. My DIL couldn't stand anything cold and she was having chemo in summer and fall. Hope you are like Poodles and your taste returns soon.
Karen, glad you are getting back to normal (whatever that is). And amazing that your son noticed!
HUGS!
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I don't know how much I'd help with my experience. I had a lumpectomy in February. The ice pack was my best friend and soothed that area so much. Since then I've done chemo and have one week of radiation left. Now it's just numb and it doesn't bother me too much. I will occasionally have a twinge of discomfort there but that could be from the radiation right now. This isn't an easy road.
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FutureAndAHope, Welcome! Thank you for adding your experience. It's so hard to know what causes discomfort or other SEs - too many choices
BTW, we'd really appreciate it if you would fill out your profile and make it public. Then we will know (since we probably won't be able to remember) what your Dx and Tx have been. We also would love to know where you live. As you know, we are all over and some of us even get together in real life!HUGS!
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Dara, I was told (before I learned I’d be dodging the chemo bullet) that sucking on popsicles during infusion helps minimize mouth sores (because you are immunosuppressed, canker sores can crop up, not just sores from fast-renewing epithelial cells being "collateral damage” from the chemo). If you can’t taste flavors and have discomfort with textures, concentrate on hydration and nourishment for now. (Ensure,Boost, Jevity, Sustacal, etc, are very high-carb and boring to drink, but at least have sufficient protein, fat and micronutrients--that’s why they were developed, not as an “instant breakfast” or meal replacement for healthy people. They’ve been described as “liquid candy” for those who can tolerate solid foods but prefer sweet & creamy; but were initially introduced in-hospital. When Bob was in his residency and on a 24-hr shift, he & his colleagues would eat Sustacal pudding if they didn’t have time to sit down and eat a normal meal). To combat that metallic taste, my CC gives out LemonHeads candies.
Elizabeth, welcome home! So wonderful to have those memories of Fiji to get you through chemo. Welcome aboard, Futureandahope!
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Karen, so nice to be on just Herceptin these days, isn't it?! I had my infusion Thursday and I still feel great! I her you about weight gain... And how bout no muscle tone! My fit has definitely turned to flab...
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Hey Ho everyone. I saw almost 50 shooting stars on Thursday night/Friday morning, with 5 of them being very spectacular with long-lasting tails. It was a nice campout with weather in the 50's at night at about 7400 feet and a wonderful clear sky . I kept it low key with a non-cook dinner because it was the day after my final chemo. Today I'm back in the California Central Valley heat (105) and feeling pretty tired. DH and I started a shed cleanout project this morning and I had to remind him that I'm still not out of the woods yet with my immune system, and should not be working in dust and dirt. I don't want to get careless right at the end when I've done so well so far.
Dara, I'm sorry the neulasta shot is hurting so much. I wonder if you should discuss with your MO skipping it next time. My blood counts did very well without the shot. I think it helps when we are active and eat a healthy diet. I hope the pain gets better soon! I had mild taste changes after the first infusion but they got better in a week. Hope yours do too. I agree with the sucking ice advice for next time.
Trish, the only real fight I ever feel like I'm waging trying to keep cancer away is the fight against food! One meal won't make a difference but I hope you can find some healthier grub. I won't tell you to skip the diet, because I think losing body fat is one of the best BC preventions.
HH, congrats on getting the port out! I don't know how long they'll suggest leaving mine in. It does not bother me so I won't worry about it.
Molly, I hope you get your drain out on Monday! It will be one more step in the right direction.
Elizabeth, glad your first chemo is done. Good luck with SE's! I hope you can sleep a lot!
My dear BC sister Sloan dropped by for my last chemo and gave me a medal for finishing! We are going to plan our car trip very soon. If anyone else wants to join us or meet us along the way, please speak up and we'll try to plan around your available dates. Our goal is to drive north from Bakersfield and visit Peggy in Spokane, having great adventures along the way! Healthy eating with some walking every day. I think September is our general time frame.
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Hello Lumpectomy sisters. It is been awhile since I've posted here. I had my LX with SNB on August 9th. A few questions.
I did not get anything (instructions) on what stretches to do postop. Is there a link someone could share? When should I start them?
How long should I continue to keep ice on the incision sites? It is very bruised. My breast incision was about 3oclock (left) so some of the bruising goes under the fold of my breast.
Where was your SNB located? For some reason I thought it would have been right where my underarm crease is. It is lower than I expected, almost is where the hair of my underarm stops growing. If that makes sense.
Any other important tips in the week or two after surgery? I should get my results on Monday. I don't want to push myself, but I also do not want to prolong healing. I have been doing neoadjuvant hormone therapy for awhile, so that has made me tired and sometimes overly emotional.
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Moondust - Glad you are doing well. Do keep out of situations where you could get a bug or problems! Wasn't that nice of Sloan to give you a medal?!?! I am delighted that you are still considering your road trip and coming up my way. I am here and ready to entertain any time!!! Just let me know!! The house is starting to come together finally. I am terrible at decorating - no talent.
Ayr, you should be "walking" your hand and arm up the shower wall as far as is comfortable but still stretching it a bit. Keep doing that. I was surprised too at how low the armpit incision was. That's what makes it oh so much fun - because it is in the way of every bra and blouse you own, almost guaranteed. Rest when you need to. Don't lift anything heavier than a gallon of milk. Don't overdo but you can still walk and mild exercise if your surgeon allows. I think rest is the most important since your body is working so hard to heal. Continue feeling good!
HUGS!!!
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Ayr, I wasn't given any exercises to do, but I assumed I should be doing wall-walks. Surprisingly, my BS' NP told me to stop, as that might irritate the SNB or cause cording (and here I thought that was what it was supposed to prevent!). So I stopped...and got both cording and a large seroma beneath the SNB. That incision was halfway between the crease of my armpit and the bottom end of my “pit-hair zone," so it was out of the way of my bras & blouses. The seroma actually popped because I had avoided my underwire bras--turns out the wire-free ones didn't sufficiently support my overly-large breast, the weight of which pulled the incision open. It had to be sutured, rather than steri-stripped, closed. It healed without incident. As to ice, use it until you feel you don’t need it. Your body will tell you when that is.
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Ayr....keep asking questions? i have no answers for you directly, only comfort and companionship.
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Hi everyone, I'm new to the site, and fairly new to breast cancer. I have an extensive family history, so I've been expecting it for years. I'm 49 and I was diagnosed in April. I had a lumpectomy June 15th. My BS assured me it was small and since I tested negative for BRCA genes (even though all other family members were positive) I was comfortable with this decision. I'm divorced after a 25 year marriage, 3 grown children, and I have just adopted my 4 year old special needs granddaughter. (the adoption was just finalized July 21st!) Here's my dilemma--- I had a stroke in 2011, at which time I was diagnosed with APS, and Lupus. The Lupus means no Radiation, which of course no one told me pre-op. I was expecting chemo and radiation after surgery. My oncotype is 20....MO says chemo is not an option. Radiation with Lupus is extremely dangerous and no one told me that at all. My RO actually told me to go back in and have a mastectomy. Have you ever heard of such a thing? I'm very upset that they didn't consult each other beforehand especially because my case is so complicated, and now I'm feeling like I made the wrong choice. I'm taking Anastrozole, I'm worried that isn't enough. What I'm pissed about is I haven't had a voice in my treatment. She told me how it was going to go. I wanted chemo, I was told by my rheumatologist that the chemo would help with my lupus and before she got the oncotype back she was all about the chemo which was only 2 weeks ago, and I have been reading many cases on here where people had 20 or lower and their MO did chemo, and/or at least let them make the decision. I am extremely frustrated. I really don't want to take the hormone blockers at all...my labs came back that I'm post menopausal, so why do I need them? Isn't my body done making estrogen??
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Kacey, I think I'd consult another MO. You may not need chemo, but you certainly need the guidance of a doctor who has a clue! See what the new MO says, before you make a decision about BMX. It's a big surgery and there's no guarantee that BC won't recur.
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Kacey, even after menopause our bodies continue to make estrogen, just at a lower level because it's precursor is only being produced from our fat cells. AIs (aromatase inhibitors) prevent the enzyme conversion to estrogen. As Poodles mentioned, it is definitely worth getting a second (and even third) opinion to be sure you have an mo who will listen to your concerns and explain recommended courses of treatment so that you can make the best decision for YOUR health
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Ayr, I had 6 specific exercises I was to do 3X day for the first 3 weeks, beginning the day after surgery. I think I tossed my booklet or I'd photograph it and message it to you. They were basically arm curls and twists in front and to the side, not going above 90 degrees to the side. These were to help with any ode swelling. They said not to lift anything over 5 lbs for the first 3 weeks. I really had no problems and had full range of motion almost immediately.
Kacey, so sorry about the conflicts with recommendations. We seek out the best medical advice and it can be disappointing when they don't live up to our expectations.
Sandy, I will definitely use the popsicles next infusion. I guess it's like cold capping for your mouth! My poor tongue and lips are so sore. I think it wasPoodles who so aptly described that even meat felt like paper clips! I think today I"ll make a chocolate protein sake. I feel hungry, but absolutely no taste and everything hurts my tongue.
Yesterday I did go to my hammered copper jewelry class. It was fun and got me started with the hammering, And I loved using a torch!! This is one of the small bracelets I made. The other one had some fired enamels on it, but I didn't like it much. I"m trying to stay active, even when I hurt. Hope all are safe and dry/cool this Sunday. Weather reports are a bit scary across the nation.
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Kacey, Welcome! Where are you located? And why weren't you given a voice in your treatment? It's unforgivable that all your various doctors weren't talking to each other since you have a such a complicated medical history. I can't speak to have chemo or a mastectomy but like 1Step said, you aren't estrogen free just because you are in menopause. I strongly recommend that you take one of the AIs especially since you can't have radiation. And it would seem that you should consider chemo for the same reason. But please consult other MOs until you find one who LISTENS to you and considers all your medical history. If you are near a major cancer center, you might consider contacting an MO there. Don't let the doctors tell you what to do. It is your body and you have the right to participate in your cancer treatment and decide what will and will not be done. Good luck!
HUGS!
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Dara, I like your bracelet! Way to go! Hope the popsicles help your beleaguered mouth!
HUGS!
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Welcome Kacey, please get a second opinion from another MO. You can always have a umx instead of BMX since you have a 4 year old to care for. It's not as big of a recovery. You definitely should consider it since radiation is off the table. As for chemo, a second opinion MO is vital. A 20 is questionable in my opinion depending on your exact stats. I know I am not a doctor but in my opinion with ILC mixed in with your IDC and DCIS may actually warrant chemo. What's your percentage of estrogen and progesterone?
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Thanks Pegg..I'm in Pittsburgh PA...we have some of the finest care for cancer here! And believe it or not, the MO I saw was one of the best. She came highly recommended. I think that's part of the problem. When they are the best in their field, they think they can call the shots.She told me I can't have chemo. No discussion, just it's not an option, period. I will definitely be seeking a second opinion.
Molly, I was ER POSITIVE (3+100%cells) PR POSITIVE (3+100%cells) Her2/neu NEGATIVE (SCORE 0)
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Kacey, I've heard of similar stories before. Discouraging, isn't it? (BTW, you might consider making your location public - I'm sure we have BCO'ers in Pittsburgh!).
HUGS!
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Molly, what's a umx? I was going to just go to list of abbreviations cause I didn't want to look dumb, but it isn't there.....so now I look dumb lol....I don't know what that is. My 4 year old was definitely a determining factor in my getting a lumpectomy in the first place. healing time was very important.
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Kacey, my onco score was also a 20. I was absolutely sure I'd pass on chemo with that low of an intermediate score, but my MO requested the Prosigna test (similar to Mammoprint) and I came back high risk, and started chemo last Monday. This all may be a mute point with your lupus dx though so second or even third opinions are super important! I am in awe of all of you moms doing this with small children! I have 5 grandkids, one who is 4 but is autistic and I'm just exhausted after playing just a couple of hours! They are so wonderful though and really keep life in perspective. Good luck with the other opinions.
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Dara, I was all geared up for the chemo, two weeks ago she told me I was having it. The chemo would actually help my lupus. Since diagnosed with cancer, all my lupus meds were stopped because they are all immunosuppressive. This has left me in a constant flare up. I guess back to the drawing board, and start all over again with a new doc.I'm just not comfortable with the whole we'll just watch it approach. As far as the mom thing, we are just doing what we have to! She gives me the strength and hope to keep hanging in there!
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Kacey, UMX - unilateral mastectomy - removing only one breast as opposed to both (BMX - bilateral). I don't know how you are managing either with a 4 year old. I thought caring for my husband was exhausting but I think having a young one with issues has to be even more challenging. I think I wouldn't be real comfortable with the "wait and see" advice either at this point. Perhaps you can get that Prosignia test Dara had to help with your decision.
HUGS!
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Peggy, Luckily school starts in a couple weeks! She's in an all day preschool program Thank God!! It has been the longest summer of my life...but she's been through so much and she needs me, so what choice do I have? Thanks for the answer to my question! I still have so much to learn...I'm thankful for this site! I'm feeling like I should have gone the umx route to begin with now.
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kacey,I also saw one of the most highly regarded MOs in Atlanta. I didn't hit it off with him, but i went back for a second visit anyway. Nope it wasn't me. He really was a bozo. I got a second opinion at a different hospital and found a dynamite MO. She is a ball of fire and after looking over my records determined that I needed agressive treatment. Getting the right MO is critical because you are going to have a relationship with him/her for many years to come.
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Kacey, it's interesting with the autoimmune lupus. I also had psroriatic aarthritis and moderate psoriasis which are both autoimmune diseases. I also had to go off my medications and the MO said, ironically, the psoriasis would actually do better with the chemo. My son chuckled and said "Oh, a silver lining for chemo!" It's really hard when you're balancing multiple conditions that can be impacted etc. I think it's so important to find an MO that is familiar with your specific scenario. Sometimes, they know about bc, but not necessarily the lupus. As you said, you have excellent specialists near you, and hopefully you'll find one you feel comfortable with and can trust. YOU are the one who must ultimately live with the treatment decisions, and as several have said in this thread, you can always go back and do more (i.E the mastectomy) but you can't go back and do less. Take your time and research every single question you have. I have only a couple of really good sites, including this one, American Cancer Society, and Susan G Komen sites. And above all else, know that every single case is somewhat different, and your reaction is not what others have. Take some deep breaths, and enjoy these last days of summer with your daughter. They are precious days!
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