Lumpectomy Lounge....let's talk!
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Welcome Angela, I had my lumpectomy on the 7th so I'm a week ahead of you. I only had one incision for the lumpectomy and SNB. I got a little freaked out the first few days. I think a combination of the anesthesia and pain meds get me loopy the first two days . My arm felt like it was asleep it just Tangled I never had any of the zapping pains . I too came to the group with questions but cuz it's a little weird when it's something you've not experienced before . The ladies in the lumpectomy Lounge are amazing and so helpful. My arm is feeling normal and last night when I scratched and itchy spot I felt it! My DH saw the look on my face and said what's wrong? I said I felt that! If they gave you exercises do it it will work wonders. I actually have a degree in occupational therapy and after I came out of my foggy state I started doing a lot of exercises with my arm and it feels so much better. I also iced that spot just like one of the girls recommended. Happy healing!
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Hi everybody, it's good to meet the new arrivals and hear from the experts - you know who you are! I am feeling overwhelmed with information, anticipation and my own ignorance.
My 15 year-old is home for a week, first time home since her ACL rupture & surgery, so lots of feelings and rehab to deal with there. She is a wonderful person, very aware and thoughtful, and now very sad and scared about my diagnosis and surgery following so close to hers (injured 1/13, surgery 1/24). My 19 year-old son, away at college, is quieter about his fears but the weight of their worries is one of the hardest parts of this. We have made it through other big crises in their little lives, and we'll make it through these. The unknown is hard to deal with.
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Welcome, gently. Have had to deal with a ruptured ACL and rehabbing from it, so it’s no picnic as either patient or caregiver. But think of it as you two being at two different places in the healing process—you taking your first steps, she being a few paces ahead of you. But my diagnosis was the same as yours, and hopefully your journey will be as uneventful as mine has been.
My son was 31 when I was diagnosed, and lives with us—but was able to channel his worries into his work. My husband (a cardiologist) had just recovered from a spring-into-summer “G.I. surgical adventure” that nearly killed him (and found a small lung lesion), and he had gotten back into the groove of his work when I got my diagnosis. We had booked a Mediterranean cruise for the week ahead of Christmas, and we discussed what to do about it should his lesion be diagnosed as cancer. He definitely wanted to go ahead with the cruise. Well, his lesion disappeared, and then it was his turn to ask me the same question when I got my diagnosis—and my answer was the same as his. I got my diagnosis in early Sept., had lumpectomy two weeks later, and did my radiation in November. And you bet we took that cruise!
This interim between diagnosis & surgery is the hardest part of your breast cancer: the unknown is always scarier than the known. Once you know exactly what you’re dealing with, and have a treatment plan with firm dates, you will be focused and in control. Just as setting specific attainable behavior-oriented goals on New Year’s Day works better than resolving to attain an end result, so too with your treatment. One phase at a time. And you will still get there. We’re all here for you, and—as we say here—“in your pocket” (virtually accompanying you) for every test, appointment and procedure.
There is a chance I will be in the L.A. area either the weekend of April 28-30 or July 1, to attend the banquet for the music awards for which I've been nominated (two songs in the same category, so I'm running against myself). As soon as I know for sure, I will let you all know. (Will probably fly rather than drive cross-country, though).
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ChiSandy-WOW! That's exciting! Can you tell us what songs? Are you a performer or composer? I love music! I can't sing at all! My grandkids say...please don't sing Gowa. That's what they call me...first grandson started it and I said I don't care what he calls me as long as he asks for me.
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I’m a singer-songwriter, mostly folk, and play guitar and mt. dulcimer. The two songs are from the holiday CD Merry Humbug by Andina & Rich (my duo, based here and in Madison, WI): “It Sucks Being Sick at Christmas” and the 'interfaith carol’ “Season of Hope.” Haven’t done any performing since a Christmas-themed live radio broadcast just after the Chicago Bar Assn.’s annual parody musical (we do four performances in an actual theater, all proceeds to charity), because when I returned home from NY & DC for New Year, I got a couple of colds and then a nasty viral bronchitis that led to laryngitis. But I will be back in action Mar. 7, in a songwriter showcase one neighborhood to the north of me. Baby steps...
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Yes, my doctors and treatment are in the Quad Cities. I really love everyone that is part of my "dream team", I call them that because it all seems like I'm in some dream, more like a nightmare, but saying my "nightmare team" didn't sound as good lol.
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Sandy,
If you do come to LA, let me know I'd love to meet you
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Hi everyone, I have a lumpectomy scheduled for mid March. I am hesitant to have it done. I am looking for your opinions and thoughts on having such a drastic procedure.
I was told I have a 1 mm intraductal papilloma. It was a surprise they found on my biopsy they were doing for linear calcifications. The breast nurse called and told me it was no big deal, that they were benign and they believed they removed it all with the biopsy so no follow up needed; come back in 6 months for mammo. Then I got a call a few hours later from my Breast Doctor that she was sending me for an MRI. I asked why, she said she wants to make sure it is all removed.
Just had the MRI done this week. Met with my Breast Dr today. She said the papilloma has to come out, scheduled lumpectomy for mid March. She told me they confirmed the papilloma on my MRI results with no more surprises and she explained the reasoning for having it removed (I am high risk since my GrandFather had breast cancer at age 26).
On my way out, I requested the results of all my images for my records. I just read my MRI, no mention of a Papilloma AT ALL. It was only mentioned in my biopsy results. It said "both breast are unremarkable with no concerning masses. Follow up with Dr for the incidentally detected 1 mm papilloma on the right with pathology report appeared completely excised. Your Doctor will inform you of the appropriate treatment to follow."
So if no papilloma was found on the MRI, why on earth would I be having a lumpectomy? Is is really necessary to have the surrounding tissues taken out? She told me it would be a large section of my breast being removed to remove the papilloma. Huh??? Am I not understanding the reason for the lumpectomy?
Is this typical?
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radmom, i don't know about papillomas but a lumpectomy is no big deal. Much easier than you might think. I had a lift and sentinal node excision at the same time and even still, i needed only ibuprofen after the first day. What really sucks is having a frightening medical condition. A lumpectomy is a small price to pay for peace of mind, in my opinion.
It sounds like you need more information about *why*the surgeon is recommending lumpectomy.
Have you considered genetic testing? You might be happy to find out whether you should be thinking of this in a larger context.
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Radmom, welcome. I think you should get a second opinion. From what you have told us, removing a large amount of breast tissue seems like an extreme reaction for a benign 1 mm papilloma. If possible, get a second opinion at a well-known breast cancer center or a university which has a breast cancer specialty. I also think Tunegrrl's idea for genetic testing is a great idea.
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Thank you so much for your response. My Dr is actually highly recommended from a Research Breast Cancer Center here, but I was thinking the same thing. Unfortunately, my insurance will not pay for a second opinion, I actually just called them to get a list of different dr's covered by them. The lady said a second opinion is not covered. I have a call into my Dr to ask again why again she wants to remove breast tissue for a benign pap.
Question regarding the genetic testing- if you test and they find the cancer gene, can health insurance deny you coverage? Has anyone had experience with this? Or maybe I can just pay for it out of pocket and not report it to the insurance company? Curious what your thoughts are on this....... any experience you want to share?
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Sandy, Congratulations! That is just awesome! Absolutely let us all know if you make it to LA.
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Excellent questions, radmom! <Following>
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Federal law prohibits insurance companies and employers (current & future) from using genetic test results against you. That’s what my genetic counselor told me.
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Random27....definitely keep asking questions from your Dr. until you are satisfied. This is something they deal with everyday and they tend to forget this is all new to us so sometimes we have to hear things multiple times until we understand. I'm sure your Dr. has good reasons why she wants it removed but may not have communicated it well. With that said, I know you do not want unnecessary surgery. Confidence in your Dr. is key...
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radmom, I had genetic testing because my brother had a lumpectomy... but his was found to be benign, so didn't need the testing after all, but they didn't charge me anything
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My Dr emailed me back. She said "Papilloma's are usually not detected on imaging unless it is larger than normal or associated with another finding. With regards to the pathology report, I do still recommend excision of the area. The reason for this is although the papilloma appears to be completely excised, it is taken out in fragments with the needle and it is impossible to be certain without excising the area. This is in addition to it being classified as a high risk lesion and suspicious, connected so close to linear calcifications and the location in the duct."
I feel better now doing the procedure. I just realized I am really nervous now I guess....... thanks for the responses.
I will look into genetic testing. Thanks for the info
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Radmom, it is totally normal to be nervous. We all were! But chances are you will receive a benign report and not need further treatment. And perhaps your insurance will allow more frequent follow ups to monitor for changes. I am surprised that they will not pay for a second opinion. After all, if you were not happy with your doctor, I think you would be allowed to switch to another one, and that is similar to a second opinion. It would be a good idea to get written clarification from your insurance. Before I had cancer I didn't pay much attention to my insurance but now I double check every little thing, because the goal of the insurance company is to pay as little as possible, even if they tell you things over the phone that are not completely true! I have good insurance but have had numerous problems with them, and get different answers from different people over the phone. Very frustrating, but once you get a list of phone numbers and names to keep handy, it's not such a terrible chore to call them with any question. I am always pleasant with them, but persistent!
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radmom27....so glad she cleared that up for you. Of course you are nervous....we've all been there and are here to help you thru it. Please check back often.
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Radmom: That sounds an entirely reasonable response from your doctor...but of course you're scared. Nay, panicked. Doesn't matter if it's likely to be entirely benign. Still flipping out, because that's the normal response. Trust us. That's how the majority of us reacted initially, and at several points during the process. But you will come out the other end.....just the same: report back and let us know how things are going?
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Well, today I saw a new MO. I love my old one, but I can't take dealing with the business office (they've started dunning me for another $700.) So I found a doctor within the hospital system where I see many of my other doctors. He was quite thorough. He *thinks* that what I've been calling chemo brain is actually SEs of Femara (very short term memory, concentration issues, increased insomnia). Anyway, he ordered a DEXA scan in July and I'll see him again in August.
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Poodles, That is an interesting theory on your "chemo brain." I must say that my DIL who had colon cancer has those issues and they are definitely from her chemo - no need for AIs. It's very possible that Femara contributes or even exacerbates those SEs. I have one friend here who had those problems on Arimidex. Lucky you having a double whammy. So you like your new MO? Hopefully the billing will be less stressful!
HUGS!
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I've been suffering from two new letrozole SEs: intermittent memory issues, and........uh, what was I talking about?
Seriously, though, I've begun having arthritis in the distal joint of my R thumb. Yup, the one I use for finger-picking guitar--just in time to start rehearsing for my next gig (voice is at full strength again). Not a trigger, but actual crepitus in the joint itself. Pretty mild for now--doesn't ache, and the pain is a twinge during part of my ROM. I think it may have been brought on by being online all day out of boredom when I couldn't cook, as well as the way I hold my steering wheel nowadays ("8 & 4" instead of the old "10 & 2'" because of the airbag, so that it won't fracture my hands if it deploys).
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My arthritis has been helped by daily use of Glucosamine Chondroitin and Calcium with Vitamin D. Not a new problem with the chemo - I've already had one hand operated on - but I think both help. I had fully expected to need to do the second hand by this summer and it is much better. I admit hours spent on the computer don't help either!
My friend Anne always tried to sort out what was happening to her body because of the cancer and what was because she was "of a certain age." Not always easy as I am learning.
WE CAN DO THIS!
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Interestingly, the new MO said that some studies show that cancer alone can cause those symptoms of chemo brain. He said it may not be the chemo at all.
I just hope it will eventually clear. I do take some psych drugs that can term memory and concentration issues. it wasn't really a problem until I had cancer.
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Hi Sandy: I am new to Femara, but having symptoms of dizziness, muscle pain, heart palpitations and nausea. I see my MO soon and he had told me that I could change to another meds, if symptoms continue. I am considering it. Waiting for effects of radiation to go away. I still have pain and burning (although the burning part is getting better), I am hopefull all will clear up since I am now 3 weeks post rads.
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Miko, the rads symptoms should begin to resolve right about now, especially any fatigue. As to Femara, I would get a cardiology workup first before switching to another AI or dropping it. The muscle pain & nausea are SEs of AIs, but the dizziness and palpitations might be an unrelated heart problem such as atrial fibrillation (which, if untreated, in the short-term can be more lethal than your very nonaggressive cancer). Not everyone can handle the same AI equally well, and there are even differences among various mfrs.’ versions of letrozole. You might want to try a different generic version (among the generics, most patients report the mildest SEs with Roxane and Teva letrozoles).
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tyty Sandy, I will follow up on your suggestion
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Glad the topic of the day was AIs. I'd been on generic for arimidex, but had a great deal of pain, especially back, shoulder, hands. My MO put the on extremestan, the generic for Aromasin. I'm seeing a smidgeon of improvement, but my co-pay for one month was $379 (as opposed to $7 for the other two drugs.) I have psoriatic arthritis so not sure what is caused by the pills and what is from arthritis.
Basically I just push through with everything and try to ignore the pain. I'm thinking of switching to the letrozole when I see him in another week to see if it's better. The hand joints are the hardest as it makes my pottery a little difficult. Keep me posted on what your experiences are with the AI you are on. Thanks!
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Hi Dara: i am on letrozole and having symptoms, but I am sure it differs for everyone. I have psoriatic arthritis thought not severe. I have been on femara since 1/1 and will try it out till I see MO. So far symtoms are still around and I was hoping that it would actually go away. It has also effected my mood. I have become moody and a lot less happy go lucky. It's been difficult for hubby but hoping to overcome the moodiness. He had prostate cancer awhile back although no chemo or radiation and he understands
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