January 2019 Surgery Support Group
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Random weird side effect alert! All day today (4 days post surgery) I've had the sensation of my milk letting down when breastfeeding. It's that tingling, tightening feeling. It doesn't hurt or bother me. I have read about phantom breast sensation which is a very strange concept. Anyway,I guess it's true for me. Note: I did not have reconstruction so the feeling is close to my chest wall, which isobviously not where I used to feel it.
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Hi everyone, just curious if those of you who have had mastectomies and are close to their surgery date were prescribed antibiotics that they will take after the surgery? My PS prescribed 2 antibiotics for bacterial infections and 1 muscle relaxer due to the TE that will be placed. I hate taking antibiotics unless necessary so wondered if this was occurring everywhere.
Thanks.
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My doctor said I would be given antibiotics at the time of surgery. She said if I'd done recon, they would have sent me home with more antibiotics.
Sending good thoughts andvibes to Hongh!
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Hi MACTAZ, I had a lumpectomy so it may be different but they gave antibiotic thru the IV at the time of surgery, just a Rx for pain med to take home.
May be TMI but good to know....the directions on the pain meds said take with Colace stool softener and they mean it. I didn't since I only took 1 pill at bedtime the day of and day after surgery. Two pills total and I really wish I had followed the instructions. Enough said.
Love, light and prayers to this weeks surgery sisters. Wishing you the very best.
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thanks yogamom2, that’s not TMI, I had such a terrible time during chemo with constipation, now those stories would be TMI, that I truly appreciate a heads up.
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I am going to have BMX with TE tomorrow, my PS said I will be given antibiotics during surgery , and he will not prescribe antibiotics, if anything goes wrong, just call them di
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Hongh,sending you good vibes for tomorrow, my good thoughts will be with you.
It’s interesting, he has given me 2 prescriptions but not mentioned anything during surgery. I guess just a different procedure.
Thanks.
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I had IV antibiotics from start of surgery, through the one night stay in hospital, then had oral antibiotics for about 10 days. I think they are partly because you are cut wide open and lots of space for bacteria to set up, even with all the precautions they take in surgery. The drains can be another weak link for bacteria to attack (my PS had a biopatch at the spot the drains exited the skin), and if having implants/tissue expanders put in, that's another weak link. It amazes me how different all these drs. can be in everything from antibiotics, to dressings/surgical bras, to arm movement afterwards, etc. My PS is very conservative, which made it a little frustrating to not be able to shower while drains in and not driving for 3 weeks, but on the other hand I have had no problems and have been ahead of the curve in my healing. Take away from this is - follow YOUR drs. orders/recommendations.
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Hi All,
I have a question about "clear margins" after lumpectomy. I had 3 sides which were all over 3mm margins, but the 4th side was just 1mm. My path report called these "clear margins" and my BS was not concerned, but Im nervous. Should I ask for a re-excision?
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MACTAZ， thank you!
Question on the pain medicine , is Tylenol enough? My dr also prescribed oxycodone, how addictive is it? I am a little scared to take it.
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Borogirl, glad to see another dr prescribe antibiotics afterward, your explanation seems very sound. My PS is also conservative, no showers until drains are removed but he doesn't restrict movement. Only restriction is I can't lift anything heavier than 10#.
kec1972, sorry I don't have any information regarding safe margins - hopefully someone else on this thread can give you some insight or direction on where to look.
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Hongh, that is a good question and one I believe we all have to determine individually. My dr also prescribed oxycodone for pain, my thoughts are I use Tylenol to see if it works but if the level of pain is to high I personally would take the medication as prescribed. I have read some articles that says everyone has a different tolerance level to becoming addicted and the risk was less than 1% in people who had never abused drugs or been addicted. People who have chronic pain and take these medications have a much higher risk than those like us who are prescribed for one-time.
I would love to hear what others think about this subject.
Take care Hongh, hope you are doing well.
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My doc only gave me a few pills.. maybe 12? I doubt you will develop an addiction in 3 days...
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just talked to my PS. He said the study shows the % of infection is 5-15% , regardless you take antibiotics or not , antibiotics already in IV
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kec1972. Kinda jealous you have your pathology back already. My lumpectomy was the day after yours, a week ago today, and I won't get my path results until my follow up next Monday. Re: margins--- might have this wrong but my understanding was 3mm clear margins and low recurrence risk meant the possibility of avoiding or limiting radiation. If having follow up radiation 1mm margin ok. Other options to further excision might be to have a more detailed conversation w/ BS to understand why they're comfortable w/ result and/or get a second opinion either from a radiation oncologist, MO or different BC specialist. Bottom line is you should ask for whatever gives you greatest piece of mind and do what feels right for you.
Hongh--Hope all went well today! thinking of you.
Re: posts on pain meds I agree w/ MACTAZ re: addiction risk. I was given generic Vicodin - hydrocodone & Tylenol mix.& as mentioned above used very little . Those with a bigger surgery or different pain tolerance may need more. If you're really worried talk to your BS, there may be non opioid options. Maybe less constipation risk along with less addiction potential?
Alto & Parchjen-- wishing you the very best outcome tomorrow
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Hi guys, I have another question that came up today. I talked with my BS and asked her if she needed a blood test and blood type before surgery and she said no, only the anesthesiologist might need it and they will tell me when they call a couple of days before surgery.
This seemed strange to me, did you guys have blood tests and blood type determined before surgery?
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Hi Mactaz, I had blood work done as part of pre-surgical test. I don't know what all they checked but doc informed everything looks fine. I have received documents today from PS, need to read those to check about antibiotics.
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Hi all! I am finally having my final surgery on Jan 24th to have my TEs removed and silicones placed. This will be my 6th surgery. I had some complications with getting staph and eventually had to have it corrected with a lattissimus flap. I am so glad to finally get these TEs out, but very nervous to go through another surgery at the same time! Good luck to everyone having their surgeries done this month! You’ll all do great!
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KMS2016, Welcome to the group. It sounds like you have been through a lot and it has been a long journey for you. I'm hoping your next surgery goes well and will be thinking of you. Take care....
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omg I am freaking out tonight.
FREAKY! !! Damn it I have 4 freaking breasts not 2.
How can I be almost 59 years old and just find this out today? Freakazoid!
Had my Pre-Op with my breast surgeon today and we were discussing my absolute horror of messing with lymph nodes. She was saying she is going to reverse map armpit nodes with blue dye injected into arm (instead of breast) to avoid hurting the lymph system. Because she has to go into my armpits to remove the breast tissue. What the hell?
Those huge lumps since age 12 which I always thought were swollen lymph glands are 3rd and 4th freaking breasts! If I had had children they would have squirted milk! !!! Out my armpits! Too damn freaky! Damn it !!!!
Called "Tail of Spence." Just want to curl up and die right now.
Has to be taken out because connected by milk ducts and I have invasive ductal carcinoma. Just what the bloody hell. Was trying so hard to protect my armpits and retain arm functionality and not get lymphedema. Just too freaky. Impossibly bizarre.
Surgeon said she will ask nuclear medicine if she can inject radioactive substance near nipple after I'm already asleep to trace sentinel node tracks, thinks there's 2 if average, and would take first node from each track = 2 sentinel nodes. Through mastectomy incision, not through separate armpit incision. And the incision is going almost all the way around my entire freaking body. Might as well saw torso off. How does somebody recover from this huge an incision?
Interesting she said by the end of her chemo she wanted to end any more anything, too sick of needles and jabbing. Surgeon had exact same breast cancer as I do. I am totally willing tonight to call it quits! this extreme freaky news is more than I can take. I have one week to decide whether to let her take 2 sentinel lymph nodes. I did not know I had 4 breasts! The point of taking 2 sentinel lymph nodes would be to see if there's mets to them and if so to justify Kadcyla, a nuke chemo via Herceptin that improves survival by 50%. I'm going to refuse radiation because I don't want to "smoke burn fry and blister" and radiation also causes lymphedema. A breast in each armpit. Please wake me up from this nightmare. It cannot be possible.
Just think I could have made my living in the circus all these years. Instead I wanted to be a nun, enamored of the spiritual life, no sex, nobody ever touching the ummmm 4 breasts. What the freaking hell.
Should I have an amputation party and invite my friends to mourn and say goodbye to 4 freaking breasts? I mean I truly didn't care but now that I have FOUR OF THEM ...
2% - 6% of women get extra breasts in their armpits. Lucky lucky me. *faints*
I've brought up my super swollen armpits to every doctor I've ever had and not one has said a peep. Not one. Until today, and surgeon was casual. I had to come home and research it to understand what she meant. Because I didn't quite believe her.
Yes it hurts. Everything hurts. Almost 59 years old and been walking around with 4 freaking breasts all these years and had no idea. So blown away cannot grapple with everything. And of course this changes the equation because the freaking milk ducts go straight into armpits. So more of a chance of mets to the lymph nodes. Just DAMN IT.
My breast cancer tumor originated exactly where I rested my iPhone all night under ultra stress every night for over a year. Lymph nodes are all normal in scans. Tumor has left the building. There may be micro mets, tiny stray cancer cells, in lymph nodes. Maybe. Drs want to know but I want to preserve arm functionality but that is now compromised anyway because I have 2 freaking breasts living in my armpits. And they have to be taken out.
CT scan and ultrasound showed no enlarged lymph nodes. That should have clued me in that something was very fishy but my whole life I thought they were swollen lymph nodes. Definition of "error in thinking." Floored.
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HI ladies, I hope everyone is doing as well as can be expected during this difficult time in our lives. I am now 12 days out from surgery and I feel so much better! I am sleeping a regular amount and my anxiety has ratcheted down to a normal human level. My husband and I were just so worried about the surgery and then, after I made it through the surgery safely, we worried about the pathology results. I know that is a normal response., but it feels so good to be past this part. I meet with the radiation oncologist on Thursday, so a whole new can of worms will be opened then.
I wanted to share something that I did before the surgery that made me feel as little better. I read about it from some blog post. I made my hubby a little care package bag for him to have in the waiting room while I was in surgery. I put it in the car the evening before, then I had him carry it in for me and told him to start looking at it after I went back for surgery. He loved it and he said it really distracted him for a while and made him feel better.
In the bag, I included a small framed picture of the two of us, some snack packs of nuts (He isn't a sweet eater or I would have done cookies), a large bottled water, some Ginger Ale (his favorite), a blanket in case the waiting room was cold, a neck pillow(I used one we already had, no need to spend $ on something we have already), a few scratch off lottery tickets , some chewing gum and 2 decks of cards (I ordered some pink breast cancer awareness Bicycle cards) He loved it. We have been married 24 years and he spent 5 long hours worrying, so I'm glad I could show him a little love. My aunt , inlaws, and hubby passed the time with the cards. It made me feel a little bit in control before the surgery, and less selfish; since I had spent a lot of time preparing for what I would need afterwards.
I have been recovering nicely, the surgeon got huge clean margins and my nodes were clean. I pray everything goes this well for all of you here.
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Cascadians, OMG, I cant imagine going in for a meeting and getting that kind of information thrown at you. How could a person have gone through life and no doctor ever told you about this especially when you had asked time over time. My ♥️ goes out to you today.
I know how adamant you are about not getting any sentinel nodes removed, I was also. I know you have done your research on the subject but I do want to share with you the info I have gathered over the weeks just in case there is something that might help you with you decision. PLEASE DON'T GIVE UP!
They say on average 5%-17% of women who have sentinel nodes extracted contract lymphedema. It is still high in my eyes but with fewer lymph nodes taken that % decreases. My BS is also going to do the lymphatic mapping in the arm to help with identifying those nodes critical to the lymphatic channel in the arm and won't excise or disturb those nodes. The issue for us, we are both triple positive and I believe you also went through neo adjunct therapy, is the neoadjunct therapy can hamper the uptake of the isotope used to identify the sentinel nodes. My BS said if that is the case, she would have to put the blue dye in the breast versus arm to help identify the sentinel nodes. There is always a catch. I believe being triple+ also causes us to have a higher instance of cancer in the nodes, even with imaging indicating they are clear.
In any case, after all my review, 2nd opinions and research I decided to allow up to four nodes to be taken for biopsy, if I have that many sentinel nodes, but no auxiliary dissection. I will cross that bridge later if I have to. The average sentinels are about 2.7 and BS said she rarely sees more than 2 or 3. I decided 4 because many studies have indicated that if any cancer has migrated it would be identified prior to the 4th node. In any case, I just decided I wanted to know what I might face in the future, if the cancer has gotten to the nodes, I know and can figure out what to do or not do.
I know it isn't what you wanted but I just don't want you to quit, I know you are a strong women and can fight this. In any case, I support you and any decision you make.
Take care and all my thoughts are with you. 🤗
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mactaz, regarding your question - I had comprehwnsive blood work, urin sample evaluated. I went for chest x-ray, to my imunologist (asthma from childhood) and to my gyn. doc. all this was reqiuered prior to my operation and it was evaluated by my GP. but I am in another country, I guess that's just the way it's done here.
regarding sentinell nodes - I had 3 taken, the first one showed micromets. All tests prior showed clear nodes. I'm tripple positive too
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Thanks Jaboo, if they found micromets, are you having other procedures performed or are your doctors expecting the herceptin to take care of the issue? My BS wanted to perform axillary node dissection if any cancer was found. I told her I agreed only to Sentinel node dissection and if any cancer was found, would decide what steps to take next after surgery. I'm curious what others are doing if micromets are found.
Thanks...hope you are well
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Thank you Mactaz. I know only you my pink sisters going through this long ordeal can understand what it's like to find out you have 4 freaking breasts: Double the Trouble. Will be far more extensive surgery and the incision will encircle almost the entire torso. I'm horrified.
Here is a picture of one of my extra armpit breasts. They were as large as grapefruit before I started chemo. Normal 2 breasts are way too large.
Breast surgeon is excellent and I'm very grateful for the reverse mapping she'll do to protect armpit lymph nodes. If they did take 2 sentinel nodes, one at the end of each of 2 tracks, and pathology report showed mets, then the oncologist would hit whole body with Kadcyla chemo. No radiation because the incision will be enormous and will take a very long time to heal because of diabetes.
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Mactaz, the procedure with sentinel nodes here is the following - injection of the tracer shows sentinel nodes. they take out about 2-4 nodes that light up. they perform quick testing of the nodes DURING THE OPERATION - if there is a macrometastasis (more than 2mm) then AND is performed right there during the operation. The quick testing shows only macromets. If the testing during operation is clear (which was my case), then nodes are left alone. The final pathology may show micromets or isolated cancer cells, which they don't see as a reason for axillary nodes dissecrion here. Radiation follows.
In my case, all tests showed no cancer in nodes. Quick testing during operation was clear too. Only during the final pathology were micromets found, in the first node of the 3 taken. I had full chemo + Herceptin + BMX next week + radiarion after I heal from the BMX. I think there really is not much more I could do.
My friend (tripple +++ too) had her testing positive during the operation, one of her nodes had a macrometastasis. The BS took more nodes (not a full dissection, just several more nodes in the row). But the pathology hasn't found any more cancer - just the met in the first node. She had 8 nodes taken out in total. No LE so far, she is exercising (joga, walking).
well, I'm not sure whether this can help anybody here, since I am in Europe. But that's just the way it's done here. The BMX is my decision based on my family history, so it's not a part of the usuall procedure. My MO sees it as prophylactic, however I do not. I am scared they will find more cancer... I don't know what would follow...
Cascadians - I just want to chime in with a piece of info my radiologist gave me, during my ultrasound... She explained there are some women who have more than 2 breasts... she said some may even have 2 or 4 more nipples down towards the waist. Well, maybe that's something similar. I am sorry to hear about your condition and that this will cause you to have larger incisions.
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Jaboo, thank you for the info, it is actually very helpful. The process is very similar to what was told to me by another BS that I got a second opinion from. The only exception would be is macro disease they would do a full axillary dissection. I think EU is probably further ahead in this area than the or doctors where I live. Also, I just noticed I hadn’t added you to the schedule. I do go ahead and get your name added. Your surgery is the 21st, correct
Cascadians, I can't believe none of your doctors said anything before now.
All stay strong....
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For anyone wondering why a type & screen, or type & cross-match for units of blood, is not routinely done before breast surgery it is because there is a relatively low risk for this surgery in terns of bleeding enough to require transfusion. While I know we all consider this a major surgery, removal of the breast is pretty external - this is not like surgery on an internal organ. The general approach by blood banks is to have enough Oneg units in stock to cover any bleeding risks during surgery, and most blood banks have access to additional units should the need arise. Oneg units are universal - you can receive them regardless of blood type. That option allows enough time for the compatibility testing to be run a type and cross-match and any subsequent units required would be in type. For those who had chemo first, a CBC is usually run to determine whether your counts are satisfactory for surgery. At the time I was diagnosed I worked in the blood bank of the hospital I had my surgery in - trust me, I asked these same questions.
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Suzanna - What a great idea for loved ones who are waiting for you in surgery! Thanks for sharing.
Hongh - How are you doing?
Parchjen - sending you positive energy today and praying for the best possible outcome, for you and everyone here.
Mactaz - I just scheduled my pre-op and they plan to do chest xray, urine and blood samples, EKG. Only had blood work when I had my hysterectomy last year.
Being Positive - your next girl, you got this. Praying for you.
I'm a couple days away from UMX myself and I feel the anxiety rising. I thought it would be better once I had a surgery date, but now that it's so close I'm past the anger phase and have entered the grieving stage. Find myself breaking down into the ugly cry out of nowhere, and I'm not the crying type. I hate the unknown, and I like to be in control so this has been the worst 2 months of my life. I just hope I'm as strong as everyone keeps telling me I am. I welcome any advice, tips or warnings from those who have already done this and nothing is TMI in my opinion.
Stay strong sisters!
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Thanks all for the info.
SpecialK, thanks for the info, the explanation why blood typing isn't dont helped. Maybe you can help with another question, I had chemo along with adjunct therapy and my last infusion was December 13th. I started adjunct therapy, H&P, on January 3rd and they did blood work again which showed, as expected, all my counts got slightly worse but was okay for the H&P. I'm currently not scheduled for any additional blood tests or pre-op tests. My BS said the anesthesiologist would be the one to decide about blood tests.
I have another H&P Infusion on the 24th of January, no blood test scheduled, then my UMX and sentinel node excision on January 28th. Should I ask someone to at least run a CBC to ensure my levels are sufficient for surgery. I'm very confused. Any thoughts would be appreciated.
Bird92203, thanks for the info - it seems everyone has some sort of preop tests scheduled. Not sure why I don't have any scheduled. I will be thinking of you next week, let us know how it goes.
Hongh, Parchjen and being positive, thinking of you.
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