Lumpectomy Lounge....let's talk!
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Susie2017 - You should have been given post-op care instructions, and if you haven't already, give a call to your surgeon's office to get some. Each Dr has different protocols so it's hard to say that what we did is what is right for you. That said ... I wore a bra (sports) for the first 3 days post-op just for the support, even at night. The bruising lasted for about a week?? in the armpit. But I had a full ALND rather than a sentinel, so that may have made a difference. My doc said to "use my arm normally as long as it wasn't painful but don't lift things. But DO comb hair, brush teeth, etc with the arm" She also gave me a book of exercises to do, but said not to start them for two weeks after surgery. For the incision, I had steri-strips that come off on their own. I was not allowed to shower for about a week because I had a drain (from the ALND). But once the drain was out, I could shower normally. That was about 6 days post-op. The armpit area is by far the most bothersome!
Illimae - I would seek a second opinion on the ALND for your Stage IV cancer. An ALND in your situation does not seem to add any additional survival or 'avoidance of recurrence' benefit, so why take the risk of lymphedema (and the other lesser risks associated with ALND). I personally am very concerned about lymphedema after my ALND, especially as I will be getting radiation treatments soon. In your case, unless you are experiencing pain/issues with the nodes in your axilla, I would be questioning the benefit of ALND. There is a website for Johns Hopkins where you can ask questions and their Breast Cancer Nurse Navigator will answer. One of the forums is for Metastatic Cancer. You might try asking this question there. They usually answer in a day or so (unless you ask over the weekend). Let us know what you find out from your doc, I am very curious!
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Grasshopper I was told that I could not have any reconstruction on my radiated breast because of radiation it would not heal.
Peggy. I read earlier about your new MO talking about you having axillary dissection. I had 9 nodes removed so I guess I had that as well. Can you share what the MO told you to look for concerning Lymphedema? I had some swelling right away in my right arm from overdueing it at work trying to catch up on work missed and a jerk of a female boss who wanted me to take pills instead of surgery and radiation. good grief!
My arm pit where the nodes were removed has gotten a bit swollen as of late again and I am consulting with an OT gal to show me how to do lymphatic massage. As soon as I have a shot in my neck( managed to get a bulged disc from my first ever massage,, grrrrr) she says we will be free to let the lymphatic fluid move into that area to get it out of my arm.
I had a scare last month- found another breast lump where my incision was. I had a diagnostic 3 D mammo which could not see it- so had an ultrasound which they believe it is benign. Odd thing is they can not see it on mammo but they only recommend a regular mammo in year, no ultrasound. My GP told me she is not comfortable with that decision. I noticed they found several calsifications in my bad girl- Does anyone else have these and are they anything I should worry about? I swear we have to keep fighting to get the care we deserve.
Welcome all the new people, I am sorry you joined a club you never wanted to join- This really is a great room with a great group of helpful gals
They have helped me a lot. 0 -
Ndgrrl, you do have an ignorant boss. Geez. My MO said any pain in my arm, warmth (indicating an infection) - immediately seek medical attention. I think just be aware of your own body, especially that arm. And of course, no injections or blood pressure cuffs on it. I have to watch with my kitty since she tends to bite so I use my right arm/hand. Other ladies who have experienced LE can better tell you what to look for.
HUGS!
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Saw surgeon today. Will have lumpectomy, along with excision of a benign spot and sentinel nodes. Follow up with brachytherapy (internal radiation). And a long list of variables that could occur with any of the three location pathologies.
It was late in day so they could not confirm surgery date but they are shooting for next Monday or Tuesday.
So this week looks like I need to get my house in order (cleaning and groceries), got front hook bras, button down shirts. Anything else I should get this weekend to prep for surgery and brachytherapy that will make life easier?
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Frozen meals or a good online delivery service!
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Hi- I had brachytherapy. After my biopsy I was giving a spandex tube top and I wore that during my treatments. My cancer had been at 12 oclock so the brachytherapy balloon was inserted kind of in the side of my breast and the tubes remain outside- I wore the spandex and it kept the tubes tight against my side, I did have a front hook cotton just cheap bra a few sizes larger than I would normally wear and it worked as well. My breast swelled some during the brachytherapy. My doctor told me I could use ice packs and advil which helped during the treatment. You will not be able to shower while you have the balloon in your breast but I would put water in the bathtub and sit in it, I did not get that breast wet. I also washed my hair with hubbys help in the sink with the sprayer.
Before my lumpectomy I got some easy foods such as pudding, yogurt, bread and lunch meat and cereal that I could just grab when hubby was at work. My hubby did the cooking for a little while until I felt up to it. I also used an ice pack for my arm pit after the nodes were removed. Its nice to keep a couple of those gel ones on hand.
Another thing that is good to keep on hand for after surgery is prunes and stool softeners as pain meds have a bad habit of constipating people. I found using those helped a whole lot.
I wish you well.
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Gardenerd - sounds like you are planning well. I suggest you have a list of things people can do to help you when they ask. You will obviously need a driver to surgery - also when they place the balloon for the barchetherapy. (For me that was the hardest day actually. I should have taken more pain meds before they started the incision for the balloon - then we had to drive to the radiologist office and he did more movement of the tubes). I had to go twice a day for radiation - think about how far it is and if you will come home in between or stay where you are. If you are staying, I would particularly suggest a driver then too as you will be tired. I was able to come home in between sessions and take a nap. Let people bring you a meal, go grocery shopping or do your laundry. It's OK to need help. You will be on an emotional roller coaster too. Be good to yourself.
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Thanks Gardennerd and Tappermom for your comments the other day about aspects of survivor guilt as well as interaction with others at later stages and interactions with our providers. Learning a lot from thoughts of others so I appreciate all on the forum sharing info and wisdom. Tappermom, so sorry about the losses through wildfires. Having that experience once is too much, but going through it more than once. . . Others have gone through or are going through other types of situations - apart from the breast cancer - triggering all sorts of reactions. Sending good thoughts to all.
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Variable asked about biopsy clips. As I understand, they're made of titanium. In the past months, I had 3 successive biopsies on 3 separate days for 4 suspicious areas (2 US and 1 MRI). I'm glad that they were able to get pathology on the suspicious areas in sequence and help decide that we could start with a lumpectomy. Before the first one, I was frightened about the clips, so I read a lot about it. I felt reassured about the clips. I learned that they do not preclude having MRIs and they do not trigger problems with metal detectors at airport screenings. I realize that some report having side effects. I was sorry to read about folks experiencing ill effect. Our bodies respond differently. I felt convinced that for me, the benefits for diagnosis and treatment outweighed the potential risks. I've already benefited from the clips during imaging prior to surgery, etc. Others on his forum might have had other experiences with biopsy markers and could offer more info.
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Thanks for responding Blooming! My clips are stainless steel. I had my MRI today, and all went well. Boy that machine is loud!
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GREAT NEWS! I got the pathology back from my lumpectomy, no nodes are affected, all clear. Now I wait for the Oncotyping results to see if chemo is necessary or not, not sure how long that takes. I see MO tomorrow. I'm healing very nicely after surgery, a little bruising remains but ice helps a lot with the discomfort under the armpit.
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This is so exciting - a couple of ladies on another thread also got the news of clear margins and no nodes involved. Best of luck as the adventure continues.
MJ
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Susie, Fantastic news! Hope your Oncotype score is so low it can't be seen!!
HUGS!
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Susie - Happy to hear your good results! Oncotype takes about 10 business days. My results took exactly that. Armpit discomfort lingers for awhile, but does get better. You are doing great for only about a week after surgery.
Healing thoughts & gentle hugs to all.
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Susie, Celia is right about armpit discomfort lasting a while. It was only last week that mine subsided. Hope yours doesn't last as long!
MJ
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It was over a year before I got most sensation back in my armpit. And I still can irritate it with the wrong bra or top.
HUGS!
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Susie2017- That is GREAT news. Hopefully the Oncotype will bring you further good news.
Thanks to all for prep supplies for lumpectomy/brachytherapy coming up. So good to know what to have on hand.
Met with radiation oncologist today for the first time. Very thorough discussion and he relieved concerns on the "what ifs" also. I had wondered how soon the brachytherapy would start after surgery. Surgery is on Tuesday and Mammosite exchange on Friday morn. He said after a CT of the site, if all is well, we can start radiation that day. I'm ready mentally.
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if your nipple has become inverted will it come back out after tumor is removed?
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Hard to know, Mucki, but I'll give you the benefit of my experience. I was born with inverted nipples. They never stood up, no matter what. When I became pregnant this was a BIG problem. After I had the baby I attempted to nurse him, but latching on was difficult. Enter my best friend, the breast pump! I started pumping 2-3 times a day and within 2 weeks I had headlights and the baby was nursing just fine!
Now, I realize this isn't quite the same, but you might want to give a breast pump a try. I don't think it would hurt, other than the minor discomfort of the pumping action. Check with your surgeon, of course.
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Susie, great news on negative nodes! Sending positive vibes as you wait for onco results. Seemed like armpit discomfort lasted a couple of weeks then area became numb as did tricep area. 1 year since surgery and just now starting to get some feeling back.
Gardennerd, glad RO was able answer your questions and prepare you for next week.
Mucki, sorry can't answer your question but hopefully one of the others here can.
I get my 2nd post surgery mammo next week and then see RO.
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HI, when I had brachytherapy I was in the OR and they put me to sleep to insert that balloon. I then went to get my first CT scan to make sure that placement was ok. I was given pain meds. I driver is a good idea. I did get tired after that last day and nauseas. Brachytherapy is done in no time. I had the lumpectomy on Aug 19 and brachytherapy balloon inserted on Sept 6 a Friday. I had brachytherapy on Mon to Fri- twice a day, with a CT scan each am to check placement.
Good luck
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I've never heard of Oncotype.....would you be so kind to expand on it? TI
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The Oncho DX test is a test to determine if you will need chemo or not. They test a sample of the original cancer and it will show if you are at low cancer risk(0-17) medium cancer risk18 to ? or high cancer risk. If you are low or sometimes medium risk you will not need chemo. High risk on the Oncho score will most certainly mean chemo. The higher the risk the more the chemo will benefit you.
It is all rather confusing but I am so grateful for the test as my MO was scheduling me to be part of a trial of chemo through the mayo clinic. I scored an 18 on the Oncho score which is the last number on the medium or moderate cancer risk and was told I would not benefit from cancer.
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Lots of info on the internet if you google/search Oncotype DX - explains very well when used (not used for all tumor types/receptors) & all about it - was also given a brochure at BS visit 1-week post surgery, when tumor pathology reports were discussed & BS advised sending in for Oncotype DX. Apologies for sending someone to the internet - too tired out to explain further & in this case, info echoes what was in brochure.
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OncotypeDX is not ordered for hormone-receptor-negative tumors (whether HER2+ or triple-neg), as chemo is a given. It’s only for ER+/HER2- with 3 or fewer (including 0) positive nodes. Most ER+/PR- tumors will score at least “intermediate risk,” especially if Grade 2 or 3.
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Hi Ladies,
If you had Lumpectomy done, can you pls share your experiences of the surgery and post recovery? I am also interested in knowing how much it changed your breast shape/feel etc. I am having a hard time to accept that can happen. My cancer are small(<2cm) but I have it on both sides.
I also read somewhere says Radiation will change the breast make it smaller than before, true? What are the experiences if you've treated with Lumpectomy plus Radiation?
Thank you.
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whattodo - my surgery went really well. I had little pain in the area of the breast surgery - just some soreness that's still there if I bump it. The area under my armpit where I had the SNB was more uncomfortable. I have some numbness in my tricep. At the five-week mark my discomfort subsided dramatically.
I found putting a small pillow under that arm helped tremendously - eliminate that skin to skin contact. I was looking at my breasts this morning and see a little difference in size. I might still have some swelling.
I start the radiation leg of this adventure next week so I can't speak to that yet.
I'm assuming you haven't had surgery yet. Best of luck to you!
MJ
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WhatToDo, Welcome to the best lounge on BCO! My breasts are small and after surgery and radiation still are. However, I haven't noticed much change in spite of having a rather large area removed (5cm x 3cm x 2.5cm). My surgeon was able to make my breast look quite normal except for the downward facing nipple. I don't think radiation changed anything for me. My recovery from surgery was uneventful (in spite of having a mild infection). I had unusual circumstances since I was caring for my disabled husband 24/7 by myself and that meant I was lifting weight more than 14 lbs (hubby weighed about 180 lbs). Radiation was easy for me. I was more focused on hubby since he was in the hospital with post-surgery pneumonia and it was touch and go,, so I'd just leave the hospital, drive to the other part of the hospital campus for my rads and then back to the hospital. I've also been on generic Arimidex for over 2-1/2 years with no noticeable side effects.
If you are able, please fill out your profile as completely as you can, the go to the SETTINGS tab and make each item PUBLIC including your location. That helps us remember your particular circumstances.
It is definitely a scary time when you first start this journey. You don't know what you don't know. I recommend you read Dr Susan Love's Breast Book. It has excellent information on everything to do with breast cancer. That will give you a good basis to discuss your treatment path with your doctors.
Keep asking questions here and we'll be glad to answer.
HUGS!
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WhatToDo, I had a lumpectomy, then a re-excision about 4 weeks later to get clean margins. Followed by rads and now on Tamoxifen. Both surgeries were no problem. Surgery on Tuesday back to work on Monday. Only used pain meds 1st day, Tylenol after that and iced the areas often. The SNB incision gave me more discomfort than LX. Like MJ said, I kept arm away from side to keep it from rubbing. I pinned a piece of fleece fabric to my bra to help with the rubbing. After a few weeks, armpit and tricep became numb. (I'm starting to get feeling back now). I was able to heat up meals with good side, and limited what I did with surgery side. Started Rads about 4 weeks after last surgery. Did not have any problems. I'm on the small side. Just had some itching and fatigue. I went to Rads early in morning and then went to work. Was able to drive myself. Started Tamoxifen as soon as Rads was finished and so far no side effects. You'll find this is a roller coaster ride. You just have to go with all the twists and turns. At first the waiting is the worst while they figure it your treatment plan. Once you have that you'll find it is all doable, not fun, but doable. And there are a lot of us here for support. Sending positive vibes.
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~Hi WhatToDo~
I had my surgery and radiation 16 and 12 months ago, respectively. My cancers were very small; 3mm & 6mm for DCIS & 3mm for IDC. They were in the same breast and close together--11-12 o'clock & 10 o'clock--so I had a double lumpectomy with one incision. Actually, I was told my cancers were removed with the biopsies I had to have for diagnoses. The surgery was to clear margins. I was originally scheduled to have the incision in the areola area of the breast, but my BS decided under the armpit near the 10 o'clock site was better. I also had 5 lymph nodes removed. My surgery went well and I had very little pain. I was given a pain killer to take if I needed it and I did take it the first night, but didn't need it after that. I had to wear my bra for 48 hours after surgery and wasn't able to bathe for two days. I didn't have any bandages,only steri-strips (that fell off after two weeks), so I had to be careful not to get them wet. I used a hand-held shower head I had in the bathroom and made sure I didn't wash that area until the BS gave the okay. When you do bathe, be very gentle if the breast is tender, both washing and drying. I didn't notice any changes in the breast post-surgery other than a little redness and, of course, the scar.
My radiation started 6 weeks after surgery. I wasn't tattooed, I was marked with a Sharpie and a clear tape was put over each mark. These were checked every day and I was told not to scrub the area when I showered, but I could bathe normally and pat dry afterward. I had two simulation CT scans (one prone and the other supine). My RO was leaning toward the prone because my breasts are large and he didn't want to radiate my arm or chest, but he wanted to see both options. I preferred the prone and we went with that. I had 35 daily radiation treatments (Mon.-Fri.), the last 10 were boosts. My breast got really red and really sore, but Aleve helped with the pain. I went top-less (or just wore a loose shirt) around the house most of the time because it felt better not to have anything touching me. I did have trouble sleeping because the breast hurt, so I took a standard - sized pillow and laid my breast on it. I was given a small pillow by either the BS or RO that I could place under my arm to keep skin-on-skin rubbing to a minimum. As I said, my breast got really red and sore, but I never blistered and I used a circular massage that helped alleviate the breast pain. The radiation nurses told me to buy Aquaphor and apply it liberally to my breast every day. I think I started doing that the second day of treatment. I spread the Aquaphor (it's like vaseline) over the entire breast after every treatment (place a soft cloth under the breast & up over the breast if you don't want to stain your bra. I wore my work bras because they fit the best and I intended to treat myself to a proper fitting and new bras when treatment was finished). Be sure to shower the Aquaphor off before radiation. You can't have anything on the breast and no deodorant or scent. I was fortunate that I had a lot of sick time and also belonged to a sick pool at work, so I was able to take several weeks from work and concentrate on healing. I was fatigued throughout most of the treatment and my breast stayed sore for about a week post-rads. It was red for several months after and has a tan now. And,yes, my breast shrank, noticeably. The left breast is a DDD/F and a bit droopy; the right one is now a D/DD and higher. I look like I had a lift! I did have a fitting and I did buy new bras, but the right lady kind of flopped around and hurt, so I found awesomebreastforms.com and ordered a knitted breast form that fits inside my bra.
My right breast feels firmer than the left and It is much more sensitive to stimulation.
I still have an occasional stab of pain in the area where the DCIS was removed, but those are fewer and farther between. I have not had any pain where the IDC tumor was. I do have a lump/bump of scar tissue between the two lumpectomy sites that I am currently massaging to help it go away. The BS, RO & MO have assured me it will eventually disappear.
I hope this helps.
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