Lumpectomy Lounge....let's talk!
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Poodles, I understand that some with dementia respond well to music (listening to our singing) and/or art (looking at pix or using coloring books). I figure this might be especially moving if a person enjoyed these activities when they were younger. Mentioning In case these might help. The nursing home might have a recreation therapist, who might have ideas.
Tappermon, we had LX and SNB on same day and will see our surgeons on same day!As I understand, this will pass.Although you might not be exerting as much as you are used to, you are still taking up energy. Your body needs time to heal from surgery, from anesthesia, and from any pain killer.I'm starting to feel more like myself but I seem to have spurts of energy for mental tasks and physical tasks and then I run out of steam.
I'm learning the ropes here. I notice that we have different life experiences and we're juggling different life challenges with our treatment. I appreciate the ways that folks seem to support one another.As I was entering "cancerland," during my first biopsy, I was in the waiting room for "diagnostic" rather than "screening" imaging. Several women of a similar age and stage – in their 70's - began to compare notes of diagnosis and treatment. I was disheartened that one woman whose cancer was diagnosed at a more advanced stage, told another woman, "You didn't really have cancer; you only had DCIS." The person with DCIS shared how many rounds of chemo she had, but the other person countered with competitive and dismissive remarks.At that point, I was called in, so I didn't have the chance to jump in to say something conciliatory.I'm pleased that this community is respective and supportive!
Question: Do those who had only a few nodes removed during SNB ( e.g., 2) also need to take precautions against lymphedema?
I noticed that some mentioned commemorating holidays at this time of year.Whether or not you're celebrating something special, I hope you're experiencing the start of spring in your neck of the woods. May it bring you renewed hope and comfort, especially for those going through a very tough time.
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Thank you, blooming. I may be older (70) but I'm not used to feeling weak. It's hard to slow down!
How terrible for that woman in the waiting room. Why must some people treat this as a competition - my cancer is worse than your cancer? We're all in the same boat! Thank goodness for this site and the support we offer each other!
MJ
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And here I thought Penis-wagging was something only men did. Obviously Blooming found a woman who was so equipped and found it necessary to do. I feel sorry for the poor woman who was the victim of that heartless, mean person.
We ARE in this together.
And yes, it appears we all have to be alert for LE.
HUGS!
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Speaking of everyone having different experiences...
Has anyone here had a lumpectomy WITHOUT radiation? The internet says "most" need radiation after a lumpectomy and I'm trying to find out who doesn't need it. My margins are clear, my lymph nodes are clear. The biopsy said microinvasive but the surgery pathology only found DCIS (the invasive part was all removed during the biopsy) So if all the cancer is gone...can I just be done?
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PontiacPeggy, Thanks for the info about all of us being susceptible to LE, even if only a few nodes.
Law193, I believe that the research about the efficacy of lumpectomy vs. mastectomy is based on lumpectomy **with radiation.** The doctors who've discussed it with me have stressed the importance of radiation as a way to "mop up" any microscopic traces of cancer near the tumor site or elsewhere that haven't blossomed into larger growths. There are some reasons I might not be a great candidate for radiation, but I understand it is a key part of the equation with a lumpectomy. Others here, please correct me if I have this wrong!
Glad to be in an environment in this community where we look out for one another! Yikes! My first entry into "cancerland" in that waiting room was disturbing!!
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Blooming, I moved from Detroit area to Spokane last June and had to get a new MO. At my second visit to him, he emphatically corrected me when I said I had a SLNB done, after all the BS took 3 nodes but 2 more came along for the ride. He said that is NOT SNLB, it is an axillary dissection. No one had ever said that. He said I am definitely at risk for LE and told me some things to look for. I'm very lucky an have not had any problems. I'm not sure where the cutoff is between one and the other. Radiation was also important in my treatment plan for the reasons you've heard. I know there is some discussion it might not be necessary but that hadn't occurred when I had mine. I still can't believe how bad that waiting room was. You won't find that environment here!
HUGS!
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Good evening everyone. Last time on I had questions regarding cording, since then I have seen my BS and have been referred to OT for massage (torture) therapy; my appointment is this coming Friday. The pain from cording has increased and I am feeling pain in my upper arm that limits a cross body reach. I am doing the stretches that I was told to do months ago by the therapist, but it doesn't seem to help much. Hoping for some relief. I have my 6 month mamo June 5th, I need all this to be better before then!
On a happier note, I've been on Tamoxifen for almost 2 months with no SE's.
Thanks as always for listening!
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Tappermom, my armpit and underarm had a raw bruised feeling from the SNB for about 2 weeks after surgery. Then the whole area went numb which was preferable to the discomfort. 10 months later feeling slowly starting to come back.
Blooming, I'm sorry you had such a bad experience in that waiting room. It's scary no matter what stage.
Law, my RO recommended radiation with the LX. I can't remember the %, but it lessened the chance of reoccurrence significantly. I wanted to do whatever I could to make sure it won't come back. Your RO should be able to tell you if the benefit out weighs the possible side effects of the treatment.
Hugs to all
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Mellang, sorry your having issues with cording. But glad no side effects from Tamoxifen. I've been on it for 9 months and still no noticeable side effects. How the massage helps.
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Sandy, the seroma isn't painful, just bugs me to have lumps at the end of the day.. I think the pain is still, like you said, the nerves deciding what they want to do and I have to stretch my arm more.. when I don't I can feel the stiffness
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Hi everyone -
I've been lurking, but I've had kind of a crappy day today, and need to vent a bit. This morning started with getting a mammo on my non-cancer breast (the right side). Apparently I need a biopsy on that side, now. Then, I had an appointment with my BS to go over the pathology of my re-exicision surgery. My supposed 1.5 cm tumor is now 3 cm, and the margins still aren't clean after 2 surgeries. Now my BS has given me a choice of a third and final excision or go straight to a Mastectomy. I am so angry/frustrated/sad that this just won't end. My cancer doesn't show up well on imaging - doesn't show up at all on mammo, so BS is doing best she can (she took out a big chunk last time). Went through 5 months of chemo and pathology says it had no definitive effect. I'm just tired of feeling like I'm doing things that aren't working! OK - thanks for letting me rant for a bit. I'm sure I'll feel better in the morning
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Grendel, I'm sorry you are having such a bad time... sometimes it seems like it never ends.. You couldn't find a better place to vent.. We are here for you, so vent to your hearts content..
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GrendelDog, I'm so sorry you're having to go through all this. I would be frustrated and angry too. Sending you a big hug and positive vibes!
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I just joined tonight so I'm still figuring things out...
Xanax is the only way I've made it through everyday since 3/23 when I got the news. I was terrified I'd lose it in the MRI but I just double dosed the miracle pill and all was good. My husband was laughing at me because he said it was like I was talking in slow motion for the hour or so later. I've heard they can give you something before they start te help you relax if you don't have a script for it already. Maybe ask before hand if you ever have to do another one.
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Radiation is DONE! Sorry I haven't been on here much...daily radiation definitely keeps you busy! Still have Herceptin through November and whatever hormone therapy they put me on for 5-10 years, but my BRB is glad to be done with this part of the journey.
It's been a long 8 months so far...
BRB=burned & raw boob
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KDTheater, YAY for finishing Rads! Do something nice for yourself to celebrate, you deserve it! Soft hug so I don't squish your BRB
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Hi Alice, nice to see you back. I haven't been as active either lately. Been having some issues with joint pain as well, plus psoriasis flare, but mostly just thoroughly enjoying getting back to my pottery. I go to the studio about 4 days a week and then am pretty wiped out but the end of the day. Alice, I'm now on the 3rd AI... letrozole. Arimedex gave me terrible joint pain, Extremestane was so much better, but my co-pay was almost $400 per month so I've decided to stick with letrozole.
Poodles, have you tried adult coloring books for your mom? When my MIL suffered from dementia, we started getting with one simpler book and a nice set of colored pencils. She loved it and it was her primary activity as she began to decline. Maybe if you started it with her. It's very calming, and most of us go back to our youth when we had coloring books. She would even save them and show them to people when they came to visit. Might be worth a try.
Hi to everyone else. Hope all are persevering! :-)
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Hi Folks,
Sorry for the basic, newbie question. Please let me know if there's a good place to learn about the multidisciplinary "team" involved in treatment. What place does Breast Surgeon play in the long term treatment? Would I see Breast Surgeon for any follow-up after the LX heals? Who will look over everything with an eye to the big picture and help me know frequency for follow-up MRI/US/mammogram? (I'm thinking of the model of the role of a primary care provider can for my general health.) I've had genetic testing, multiple biopsies, an LX with SNB, consult with Plastic Surgeon for possible Breast Reduction, and will see RT and MO. Waiting for Oncotype. A GYN referred me for the initial screening that detected this. Then because of some complex issues re: location of one of the suspicious areas that shows up only on MRI, I spoke with the radiologists who did initial imaging and biopsies. They helped me get started. Bottom line: who helps me navigate long term? Even with in comprehensive breast center, who will help me with big pix? Thanks!!
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Kdtheatre, congratulations on finishing rads! Be gentle with yourself and in about two weeks you will be much better. Grendeldog, I would meet with a plastic surgeon and discuss reconstruction as part of your decision making process. It may be better for you to have BMX simply because you face lots of stress with surveillance in the coming years. I will be in your pocket for your biopsy. Praying it's benign.
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Thanks for your support, blooming! We're in this together. I have the same questions about our teams as you do. Perhaps this is where the nurse navigator helps? Reading about all these health professionals in these posts is very confusing. Makes me wonder how any of these ladies manage to do anything other than go to the doctor and to imaging centers for tests!
MJ
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I had a lumpectomy two weeks ago. My surgeon wanted a mammogram because I had a lot of calicifications and she wanted to make sure she got them all even though my margins were clear. (????). So I just did that and obviously it was painful but also a bunch of fluid came out when it was compressed. Does this mean the wound is open now and at risk of infection? I still have one steri strip on the incision so I can't tell what it looks like. It's not still leaking. I am in the waiting area right now waiting for the radiologist to review the pictures and tell me if we need more.
My surgeon is not in today but I have an appointment later this afternoon with the medical oncologist. I don't know whether she will be able to look at the incision or if I should ask for someone else to look at it or whether I shouldn't worry.
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Hi Tappermom & blooming,
I am joining you with the same questions regarding my "team". I am a year out of surgery & 11 months out of RADS. I am still seeing all of my doctors and there seem to be some questions as to who is 'in charge'. BS tells me I will see her every six months for 5 years and then annually thereafter. She also has told me I don't need the RO anymore because she can do whatever he does (although she hasn't told me a thing about lymphedema and he has been watching me for it). She doesn't like my RO. She vaguely suggested she could handle my care without my PPO (not going to happen!). RO says I will see him every six months to 1 year for 4-5 years. He doesn't seem to care what the BS thinks. The MO just smiles through all of this and tells me he is the head of the team because I am now on the AI and he will monitor this for 5 years (I still see him every three months). He wants me to continue with the BS because she is ordering the mammograms; I stay with the PCP for my routine care and meds coverage (except letrozole); and if the RO wants to continue to follow me (as I said, he is watching me for lymphedema and he is still monitoring the pain in my right breast, although that is getting better, and my breast stayed red until just a few months ago) and I am comfortable with his care and want to stay with him, that's okay with the MO. So, for now I will stay with my docs. But it is confusing and, yes, I feel like I am constantly going to some doctor or another.
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When I first started, I thought I had a 'team', the bs saw me before the surgery and did it, then for the follow up, she was in surgery and her np saw me, but no path report and she was kinda jerky... said I looked ok and would be seeing her in 6 months for survivorship... not gonna happen, then they moved, couldn't reach them.. my first mo wanted me to do chemo and when i said no, he just said we're done... changed to cancer care and new mo didn't recommend chemo, on to rads, I told her i wanted everything to go through them so she said she would do the mammo and i would see her every 6? months.. so now i'm waiting for june to see what the mammo shows and maybe get off this wild ride... I only say the ro before rads and his np after, don't look forward to seeing her again either... It's hard to find a good dr. and then know which dr. you need to see.. my primary told me about the LE, otherwise I wouldn't have known... ok, off my box...
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~IHGJAnn~
I almost fired my BS when she started about the RO & PCP, but MO told me not to be too hasty. If I ever need more breast surgery, she is one of the top three in this area & I will want her! And she was good. He also said he knew her well and would talk to her. At first I was skeptical (she referred him to me), but he must have said something because her attitude was very different when I went in for the 6 mo. follow-up. As for the RO, it is very obvious she doesn't like him. She gave me the name of a radiation oncologist in the Med Center (Houston) and I liked him a lot, but he was too far for me to be able to drive everyday, so I asked BS for a second referral. She(grudgingly) gave me the name of the doctor I eventually used, but she said I wouldn't like him; he probably wouldn't take me on as a patient because I was having a lumpectomy; he was going to insist that the breast be removed before he would consider treating me. I saw him the day before my surgery. I was so nervous. When he came into the examining room, he greeted me with a warm smile, and expressed surprise that the BS had recommended him. After a clinical exam, we discussed what he thought was the best course of radiation for me. He wished me luck on my surgery, told me I was in good hands with the BS & asked if I had any questions. I asked if he was taking me on as a patient even though I wasn't having a mastectomy. He laughed and said 'of course, if we are the facility you want'. He is a kind and gentle man and I'm glad I have him. 0 -
Congrats KDTheater! Isnt it the best feeling to walk out that office door after your last treatment! I hope you BRB heels soon; give it a few weeks and it will be much better.
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My BS is 60 miles away and my MO and RO are just 15 minutes away. Both my BS & my RO said they would manage mammos. I decided to have RO manage them because closer. My BS seemed OK with it. I see MO & RO every 3 mos, BS every 6 mos, and PCP as needed. I get mammo on bad side every 6 months for 2 years then go to annually. Can't remember when appts with MO & RO stretch out and how long I'll continue to see BS. My next round of appts is May. Mammo, BS, RO & MO. The 3 mos seems to pass by quickly. After my last visit with BS, I saw a lady like the breast navigator that is there to help me manage survivorship. Haven't needed her yet but I'm too call with any questions or issues and she'll help me.
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Does anyone know if I can refuse ALND if SNB comes back positive? Can the BS tell the nodes positive or not during surgery? I am afraid the BS will remove all the nodes during surgery without my consent.
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Blooming - regarding your question on lymphodema, there is a woman in my support group who had SNB with only two nodes removed and does have to take precautions because she takes a lot of long flights on business. She wears an arm sleeve and compression socks. From what I've read, taking those precautions is recommended even though the risk of lymphodema is low. I also read that after SNB you aren't supposed to have blood drawn or a blood pressure cuff on that arm. Not sure what people do with bilateral SNB.....
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steph, my hospital sends the Sentinel node to pathology during surgery to see if it's positive. That's how I ended up with alnd. Talk to your surgeon about your concerns.
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Hi Molly, that's what the suegeon said she would do in the BMX. Based on all those research, I really doubt about the necessity of ALND. I am not ok to be removed all the nodes with just one to two sentinel nodes positive.
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