Lumpectomy Lounge....let's talk!
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KDTheatre, I saw everyone all the time my first year. BS every 3 months (she did the REAL checks and ordered my mammos), MO every 3 months, RO every week. And everyone wanted to see my boobs. I can't believe yours have been ignored. Now that I've moved I have only an MO and he checks things and will order my mammo.
HUGS!!
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I had surgery day before Thanksgiving, followup with BS a week later and will have another appt with BS in 2 weeks. Saw MO a few times and he will see me again after 2 months of tamox. He also told me the BS would be the one to order my mammograms. I'm supposed to have blood work every 3 months to monitor tamoxifen. Also was told no other follow up scans unless I was having pain somewhere. Not sure about that because there will always be some sort of pain that I will be thinking what I feel might be the cancer that has spread. Are others having follow up scans besides mammograms?
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Hi KD: I saw my surgeon 2 weeks post lumpy then she referred me to a RO and MO . I made an appt with both with the MO first, he checked my breast and put me on Femara and ordered my path report. One month after my first visit with the MO I started rads. After rads i followed up with the MO and will follow up with my surgeon who will schedule mammos and other tests. In between I saw my OBGYN who checked my breast and said my surgeon will order mammos from now on. It has been one Dr. visit after another
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Kd, I'm in line with Peggy. So far, it seems that everyone wants to scope out what's left of my poor mastectomized boobs. MO just wants to feel around, but BS does ultrasound.
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KD, you should be due for a breast exam and possibly mammogram. My surgeon was seeing me every 3 months now every 6.
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My experience has been very different, KD... I saw my BS 3 weeks after surgery and have not seen her since. She checked the healing and made the referrals to the MO and RO. First appointments with both they checked the healing. At first we thought I would only do the Rads, but we got the FISH report back and I was HER2 positive, so I went to Chemo first.. I was doing dose dense so treatments every 2 weeks, 4 of A/C and 4 of Taxol. Herceptin was added starting the 2nd treatment of Taxol. I started the Arimidex on Dec. 30th and then Rads on Jan 3. My MO still checks me out every couple of months to order the new Herceptin treatments and check my blood work. Every so often I also get an Echocardiogram. My RO will see me 4 weeks post treatment and not sure if that will continue or not. I was told to get a Mammogram 6 weeks post Rads. So that is where this sits now.
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I saw BS week after surgery, then at 6 mos post surgery. Both my BS & RO said they would manage mammograms. They are in different cities & hospitals. I had RO schedule mammos since he is local. RO told me I should be seeing one of my Drs every 3 months for a while. Saw my BS at 6 mos after surgery & had first post BC mammo. Then 3 mos later, next week, I see my RO. Which is 6 mos post rads. I've been seeing MO every 3 months since starting tamoxifen last July. And every one of them pokes on the girls.
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isn't it funny how everyone has a different plan? After my post-op appointment with the BS she said I wouldn't see her unless I had a problem. My RO said he would see me 3 weeks after last rad. I will see MO every 3 months. MOdid a breast check this past week but said it would be too tender for a few months to do a mammogram. I have no other scans ordered which has me wondering why or if that's normal?
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hi Caligirl. I had almost the same thing. The most recent ct scan i had was a ct half way through rads. I couldnt do a mammo any time soon so very sore still
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I saw my BS & MO a week after surgery. Saw the MO again 10 days later to get my ODX result and letrozole scrip. 3-1/2 wks post-op, when my SNB incision popped and the seroma burst, my BS’ partner sutured me closed. A week later my BS checked the sutures; and I got my RO CT scan and sim-session. A week after that, the BS’ NP removed the sutures and I began rads the following Monday. During rads I saw my RO once a week, and when I finished, he discharged me and said there was no need to see me again. I see my MO and BS (alternating with her NP) every 6 months (ditto for the mammograms).
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Question about SNB.. my arm has funny sensations. It feels like it is rubbing something and there is nothing there?!?! Like the like "batwing...bye bye arm part" under my arm pit is rubbing a seam but it's not. Also, last night my DH was helping me check the place where the drain came out he touched the front of my arm but I felt the touch in the back of my arm. We were standing in front of the mirror and I saw that he was touching the front of my arm. He saw my expression change and he thought he was hurting me. It was a jolt having my body lie to me like that!
Thanks ladies! Drain was taken out on Friday
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Vargadoll, what you are feeling is the nerves that were cut during the SNB. After my surgery my whole upper arm felt raw and bruised for about 2 weeks. Then it became numb which was better than feeling raw and bruised. But it felt weird when I touched my arm or someone else bumped it. 6 months later it'll start itching in places but I can't get to it. I'm told that the feeling will eventually come back in one to two years. The SNB site has been more annoying than the LX site.
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Hi Ladies - I am new to this thread. I am finishing chemo on 2/27 and meeting with surgeon on March 7th. I am hoping that my options for a lumpectomy are still good. Any advice on how to prep for the surgery? Good bras to wear after? After surgery I go to radiation once I can lift my arm above my head.
thanks!
Kathy
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Kathy..Welcome ..you have come to the best place for lumpy help. I was on the same plan as you and just finished rads...Yay me! Chemo was my worst part and the lumpectomy was the easiest. Comfortable clothing and bras are most helpful. My BS put a special sports type bra on me after surgery and sent me home with an extra one. I had a little pillow to keep up near my arm pit that was my best friend while resting and recovering. I was given that by my BS too ...one of her ex patients made them for all the women who have breast cancer surgery. Stay with us we will help you through.
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Tbalding- thank you! I has been sucha weird feelings. I guess Im fearful of lymphedema so I am paying close attention to that arm. And yes. SNB site more irrating Tha LX'
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ArtyMom-Yea for the last rad treatment! Enjoy that massage
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Hi, Lumpectomy group, I'm just joining your ranks and relieved to find such a strong community of people with experience, great kindness and expert command of this new vocabulary. I'm preparing mentally and physically for a lumpectomy and snb scheduled about a month from now. I'm a single parent of 2 teens who attend school out of town, and I am hoping to keep working (8:30-5, M-F, office) as regularly as humanly possible throughout surgery and later treatment.
Like KLniss, I am looking for insights into how to do this preparing. Last night I bought a post-op bra, new ice packs and a little pillow that attaches to the seat belt. I intend to give the house a thorough cleaning, and prepare a kit, maybe, where I can have in one place the things I might need like ... what? Tylenol, phone charger, hand lotion, water bottle ... Will I want a special nightgown? What will I feel like putting on to go to work? Will my snb incision feel weird forever?
I got the diagnosis while I was driving up to accompany my 15 year-old to her ACL replacement surgery (soccer practice) where she's in school about 2 hours from home. Now that she's recovering, it's my turn for head-spinning and touchstones.
Thanks all for being here.
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Hi Gently: this is a great board to be on lots of information and compassion to get you through this. My snb and lumpectomy was in November and it went well. I felt I could have returned to work a few days after, but my surgeon said no. She automatically keeps her patients out for two weeks with no traveling then on the follow up visit 2 weeks post surgery she released me. We must agree to it prior to surgery. I am grateful for that because I am a work-a-holic and really needed the rest. I still have slight pinching today, but ok. I just finished whole breast radiation (left) and recovering from that. My advise is to rest while you can and after the bandages come off moisturize, moisturize. I didn't have chemo, so can't give you any info there
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Gently, Welcome. You've obviously discovered what a wonderful group of women reside here. We do try to give you as much information and support as possible. Definitely clean house before your Lx! Most of us weren't allowed to lift anything heavier than a gallon of milk with our surgery arm for 2-3 weeks (sometimes longer) - and you won't want to. If possible please try to take at least 1 week off from work so your body can concentrate on healing. It needs for you to rest. And if your job is physically demanding, you should plan more time off. You can still walk etc. I felt good after my surgery. But that doesn't mean you're healed. This is major surgery despite the fact it is usually outpatient. You'll be up and about. Perhaps not allowed to drive for a bit. For awhile you'll want easy on-easy off tops. Wireless bras if you can. Maybe a good athletic bra. I used Genie bras but I'm an A cup so I don't need support. Those of us with more enhanced girls do need more support than that and will chime in with what they used.
Please do fill out your profile, including where you're located, and, via SETTINGS, make each and every item public! Then we will know all about your BC. It shows up with every post. You can add a signature line too. You might want to get a copy of Dr Susan Love's The Breast Book. It is comprehensive and tells you everything you ever wanted (or didn't want) to know about BC. It is really helpful. Then you'll know some of the questions to ask your doctors. Most of didn't know what we didn't know and that makes it hard to make decisions.
It has to be challenging having teens and BC too. And what a bummer how you got your diagnosis. Hope your daughter is doing well!
Keep asking questions and we'll be glad to answer them.
HUGS!
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Thank you Miko. That helps a lot. You have me thinking about aiming for reduced hours that first week back. I used more than half of the year's allotted days off to help my daughter after her surgery, so am going to have to be stingy with the remainder. I'll bear your surgeon's practice in mind. And will spend some time imagining I'm in Honolulu; you picked a good place to be!
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Thank you, Peggy, you give me lots to think about. I think we have very similar diagnoses - I will update my profile, and hone it as my understanding increases.
Ugh. I don't want the Breast Book. I don't want to need the information. I'll go buy it now. Pretty soon I'll more accepting of this fuller reality.
See you around these pages, and thank you again for your empathy and voice of experience.
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Gently, we all go through denial - believe me. It IS hard to get your mind around BC. I found the book shortly after my Dx and went through it in a weekend. Where do you live? It's likely that we have BCO gals somewhere near you! When I moved to Spokane in June I found a whole slew of BCO'ers here and had friends immediately. it was nice. I don't need the support now that I needed and received from BCO 2-1/2 years ago - I was totally isolated from being my DH's fulltime caregiver. He had Parkinson's and heart disease and I could not leave him for more than 15 minutes. BCO was my lifeline. I think BCO is pretty special - I hope you find it so, too.
HUGS!!
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Hi Gently: it is difficult to take time off - it was hard for me as well. I have low leave and was afraid time off would affect me. But since I was under "contract" with my surgeon, I took the 2 weeks. I did however, ask for flex time with my bosses, when I started radiation. They supported me and I didn't have to use sick/vac for the 5 weeks I was on rads. Just a hint: if doing rads schedule as close to the end of the work day as possible - the treatment is really really fast but I had some fatigue after and some days just needed to go home and sleep. Let us know how you are doing and don't be afraid to ask. We can help you along the way with tips on all that we have experienced. Aloha, Miko
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The end-of-work-day radiation tip is excellent & knowing it now gives me plenty of time to arrange for some schedule flexibility. My current boss is very supportive. I may be receiving a new assignment right around surgery time, and I have faith my next boss will work with me, too. Whoever that person turns out to be.
I am so grateful for your attention and support. Thank you.
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Hi Gently. You have found a great group of women. I used narcotic pain medication for the first 24 hours after lumpectomy but then over the counter worked. The lump node incision was more painful than the breast one. I had partial breast radiation which is done while the cavity from the lump is still fresh, i.e., a little over a week after initial surgery. The cath placement was hard - done under a local. The radiation itself was OK and done in a week. I was able to drive myself even though it was about 30 minutes away and I went twice a day. I had no skin breakdown from this but obviously others with more extensive rads can give you good advice. I had trouble with the port placement - one gets tilted at a strange angle and my shoulders were very tender, like they had been dislocated and then pushed back in. I will be having enough chemo that I didn't even consider not getting a port however. My veins are too hard to find.
I would get at least two front closure sports bras. I wore mine continuously all the way through radiation. I got one from Amazon but liked the Fruit of the Loom cotton one that my radiologist gave me the best. It had wider sides. She said they bought them by the case from Walmart. I am a nightgown wearer and was able to get one comfortably over my head from the beginning. I was glad to have button down shirts and zipper front sweats that didn't have hoods however.
Cleaning your house before surgery is good but also do things you need to do for yourself. Get a easy care haircut. Stock up on comfort foods and junk movies. Think about what activities - at work and at home - can be cut out, cut down etc. It's hard for many of us but say yes to any offer of help you get but do it. If you don't get enough or if people are vague like "what can I do" tell them. "Do my laundry, pick up more milk, I need dinner brought at least one night a week etc." You will need someone to take you to surgery and be with you the first night. I take my DH with me to doctor's appointments but not treatments. One more set of ears.
I wish I had assumed I would not feel as well as I did because I have a tendency to overdue things. I felt really good after my first chemo and have been miserable all this weekend after my second. Really threw me for a loop.
This thread is a fantastic place to start but wander around the site as you know more definite things. I now also go to "triple positive" and February chemo starters. The Feb chemo starters are really in this together.
I'm not certain that any of us are ready for the C word but we can do it.
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I didn't realize I'd fall in love with a huge group of strangers as part of this experience.
Thank you Taco for the advice. The "what can I do"s are starting to build, and it is really hard to have a list in mind. Someone to bring milk and clean the catbox comes to mind, now you've got me thinking about it. My sisters want to come in from out of town. They have little kids & busy lives and I kind of want to see how much company I actually need before I say yes. One is coming for the night after surgery. My childhood friend went to my 1st doc appt. to be ears and scribe, I guess we should continue that. Fortunately for me, she works from home and is master of her hours.
2 questions: does anybody know if there's a place on this site where I can keep a checklist for my own reference? And: has anyone tried using corn starch instead of deodorant while the underarm incision is healing?
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gently, My SNB incision didn't bother me too much. Surgery was at the end of August and the scar is hard to see. A friend of mine who had gone thru BC gave me some good advice. She said that if someone offers to help you, let them. Don't try to do it all yourself or think that you can! I prepared some meals ahead of time and froze them for when I had no energy to cook. I had a lot of trouble sleeping after my DX. My family doctor gave me a script to help and that has made me feel much more rested.
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Gently, I cleaned the litter box. It wasn't an issue. I took one pain pill and that was in recovery. Otherwise I took regular Tylenol at night for a few nights. My wire placement was not bad - they loaded me up with Lidocaine. I'd had one about 10 years before that was awful so I was very concerned. I used a lot of ice! My lymph node incision was a royal annoyance. Everything rubbed it. I find that even after all this time I have clothing that rubs it wrong. It took about 13 months before normal feeling returned for me. My BS said that what you have for feeling after a year is what you'll have forever.
Do ask your BS for his/her recommendations for how long you should take off work. I had my rads first thing in the morning. I was retired (still am) but DH was in the hospital very, very sick with post-surgery pneumonia. The radiation facility was on the hospital grounds and I'd just leave him, run over for rads and go right back to him. I didn't notice any extra fatigue but I was so exhausted that it wouldn't have mattered.
Where do you live?
HUGS!
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Hi Gently: i use and still use Burt's Bees dusting powder but pls check with the RO first . Maybe you can use that and wipe off in the changing room befor rads. I think I spent more time in the changing room, slathering on the aloe before getting dressed. Ps i used a nursing pad on my breast to keep the goop off my bra
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Peggy I live in the Los Angeles area. You sure had your hands full while you were doing rads. Glad to hear about the wire - I get one, too. Not thrilled to hear about the incision, but no surprise there. My BS says I can go to work sore the Monday after Friday's surgery. She seems pretty clued into the human as well as the mechanics experience - not always the case with surgeons, as my poor daughter and I learned all too well with her orthopedic surgeon. But my BS seems to understand the human element.
I am not a lover of shopping/fashion but I do like comfortable clothes that look nice. This new sleeves & fabric adventure will be a learning experience.
Does anyone have advice about sleeves vs no sleeves for being around the house? Am assuming sleeves. And natural fabrics? I wish the thrift stores had more plus-sized clothes. 2 new thoughts for future businesses: a gym for the bc crowd (others also welcome) and now a thrift store for the larger woman. I think Idea #1 is more likely to succeed.
Miko I love and adore Burts Bees products - main ingredient of the dusting powder is, surprise, corn starch - so I can put that on my list of luxuries for those friends who want to give me a thing to help this deal be more bearable.
Bravepoint, I like your story and suggestions very much, thank you. Glad you found a way to sleep. I'd better go clear out the freezer.
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