January 2019 Surgery Support Group
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Hello,
I'm sorry that we even have a January group. I am rejoining breastcancer.org after having breast cancer in 2002. I'm so thankful for the 16 cancer free years I have had.
I am scheduled for a double mastectomy Jan. 10. My left breast has a new cancer, not a recurrance, and I am choosing to also have the right breast removed. I will not have reconstruction. In 2002, 19 lymph nodes were removed during my lumpectomy because the test for the sentinel node did not work. I did get lymphedema as a result of over using my arm in a preschool teaching setting. My treatment was therapy, wrapping, massage, sleeve and glove. I no longer use the sleeve or glove. I have learned what the feeling is when the lymphedema is about to flare up and I manage it with massage and wrapping at night. I feel that it is mostly brought on by stress. If you have any control over the decision, I would urge you to not have more than a few nodes removed. I have always said that getting lymphedema was much worse than the cancer itself. It is a constant nuisance. There have been so many improvements to treatment these days thanks to all of the women who have participated in trials and donated to research.
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cerzink, I’m so sorry you are going through this again, but you have such a great attitude about it. Your experience with lymphedema is so helpful, if you looked through some of the past posts you will see it has been a topic of great discussion.
I wish you the best and you are an inspiration to me. Take care and we are all here for you. 🤗
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Hi Mactaz, could you edit my surgery to : Double Mastectomy, no reconstruction, no touching lymph nodes whatsoever.
Thank you! I've done a lot of research and removing lymph nodes does NOT add survivability or diminish recurrence. I just cannot let myself become disabled. I don't need my breasts but I do most definitely need full use of my arms. I am not allowing any injection of dye or radioactive substances and no touching, massaging, cutting etc of lymph nodes. Will have complete bilateral ultrasound and imaging does not pick up cancer nearly as well as pathological examination of excised body tissues. But I'm willing to take the risk and if there's mets we'll attack with better targeted chemo (Kadcyla) and possibly radiation down the line. No radiation for now. If after mastectomy the tumor is found to still exist in any form my MedOnc will start me on Kadcyla which is missile nuking of tumor cells all throughout body with great success in studies of Her2+
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Cascadians, I have updated your surgery information. I truly understand your concern and your decision. I'm still pondering but am leaning towards allowing 1 to 3 sentinel nodes to be excised but nothing else. For me, not at least having a few of the sentinel nodes tested would probably drive me crazy with worry. I have appointments set up with another surgeon to discuss his thoughts on nodes and also my OC to discuss other treatment options not including excised nodes and radiation. I agree that Kadcyla seems promising for us 3+ group.
Take care - hugs to all.
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sitting at Maine Cancer specialists. I have been feeling a lumpy area on either side of my mastectomy scar, and figured I should have it looked at. They couldn't fit me In for an ultrasound Today so I have to come back Monday for an ultrasound of the area. My MO didnt seem overly concerned but enough to set up an ultrasound. I thought it was probably scar tissue but now I'm feeling a little nervous. Anyone ever have this
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Thank you Mactaz!
cccmc2, I have read about women feeling lumps on their scars. Some it was scar tissue, some it was nerve bundles, a couple were recurrences of the cancer. It is good you are going to get an ultrasound to find out and get peace of mind. Prayers for you.
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Hi Mactaz,
Thank you for the info
My breast surgeon didn't really give me an option regarding the ALND. My MRI showed multiple nodes that were abnormal. I actually noticed the large lymph node first and went to my Doctor. Was several months before my diagnosis. I'm very afraid of how far it did spread in that period of time. That is one of the reason I went with the surgeon's recommendation
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Hi all, Happy Holidays! My surgery date was finally confirmed on 1/15. I am super nervous. My dr says I still have to do lovenox injection once a day after surgery, since I am doing BMX, I don’t know if my hand will have the strength to do it. I also plan to rent a hospital bed for one month, hopefully that can help the recovery
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Hi all, Happy Holidays! My surgery date was finally confirmed on 1/15. I am super nervous. My dr says I still have to do lovenox injection once a day after surgery, since I am doing BMX, I don’t know if my hand will have the strength to do it. I also plan to rent a hospital bed for one month, hopefully that can help the recovery.
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Hi Hongh, I have added you to our schedule above, sorry you have to be on this thread but welcome to our group. I hadn't heard of people needing Lovenox before - have you had problems with blood clots in the past? Renting a hospital bed is also unfamiliar to me, where are you from?
We are all nervous of our upcoming surgery and we will be there for you when you need us. Sending you my best wishes and thoughts. Take care.
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Hi MACTAZ, thank you for creating this thread, it’s very helpful.
I had blood clot developed around my mediport area, it’s all clear now, but I am still on blood thinner lovenox.
I am in San Francisco Bay Area, I just went to a local medical supply store, and they do have full electric hospital bed for rent, it’s 250$ a month including delivery and setup, I figure one month is enough for the recovery.
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Crashing your group!
For anyone having a lumpectomy, I just had mine yesterday. I took one pain pill after surgery when it started to hurt, about 2 pm, then I iced it off and on all afternoon, once I got home. I slept all night w no pain pill, & no pain. Woke up pain free. MUCH MUCH better than I expected. Granted that my lump had the courtesy to appear in my upper/outer side boob, right next to my lymph node, so the access to both was likely pretty easy surgically.
This might help others:
My naturopath had me take Pecta-Sol C (modified citrus pectin) for 10 days before surgery to continue through 10-14 days after. Apparently it reduces 'migration' of stray cells due to surgery or biopsy... 3 scoops/day. It's a powder you can toss into a drink, & tastes tart/fine.
Also I was advised to take Arnica (3 pellets under tongue) on the morning of surgery, daily for 3 days after, then once a week for 3 weeks, for bruising/ healing. (I know Arnica is effective because my ex took it when he had to have his nose broken for a surgery on his sinuses, and taking it, the black eyes never really developed.)
Good luck to all of you January people!!
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thanks for the info Santabarbarian, I’m glad to hear you are doing well. I assume the pecta-sol c would be useful for those of us getting mastectomy but do you think Arnica would only be for lumpectomy patients? My BS hasn’t said anything about taking meds before surgery.
Do you know the results from your node extraction yet or does that come later?
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Hongh, it sounds like you have had a lot to deal with, I hope all gets better and your surgery goes well. Now I understand about the bed, I had never thought of that.
Take care.
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MACTAZ I would think the Arnica would apply to any wound healing, including mastectomy. Arnica is great for trauma, bleeding and healing in general.
No node results yet. The surgeon took the enlarged node, plus 3 more. She had planned on 4 extra sentinel nodes but there wasn't a fourth opportune/'likely' node.
Because of holiday I will probably not get pathology till Thurs/Fri.
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Just one other natural healing methodology to mention.... hyperbaric oxygen is very good for wound healing. Something that a person could add to their regime if the wound healing is an issue post surgery.
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Hello, All,
I've been reading the boards for months now and decided to finally post. I'm scheduled for BMX with TE on Jan 21st. Sentinel node planned and hoping that is all that is taken. I've completed TCHP on 12/18 and ready to move on to the next step for me. Radiation is planned after surgery and then delayed reconstruction with DIEP flap after radiation. I will continue targeted therapy with Perjeta and Herceptin every 3 weeks until August. I've found this is definitely a journey.
I'm ready for surgery but nervous at the same time. Glad to have gotten chemo behind me and just looking at the next step.
Right now, I'm trying to figure out post mastectomy wear. Any resources or suggestions?
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Hi Bellemira, this is definitely a long journey for us all. Clothing after surgery is definitely a good question. I have an appointment to get measured for surgery camisoles and will also look into post surgery bras that will give me support and comfort. I am having a single mastectomy so will be lopsided until TE gets filled. Many woman talk about wearing bulky clothes for awhile and use T-shirt’s or camisoles underneath. I still am looking at other sites and will set you know if I find a good one.
I’m also glad to be finished with chemo, I start my first HP treatment on Thursday, but still have so many Dr. Appointments in coming weeks I will say I’m very tired of this, what seems to be, never ending journey.
Suzzana, good luck on Thursday, you are the first of the group to head to surgery. I’m thinking of you and sending 🤗 hugs your way.
All take care.
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Ask your PS. Mine said wear the front hook sports bras (like fruit of the loom) and I’m supposed to wear them 24/7 (for compression purposes), but every dr is different. Now I’ll have to find out what to wear after my exchange surgery in February.
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I am pleased to report very little pain post lumpectomy plus four nodes. No drain. Surgery was Friday, 5 days ago.
I have put ice on it here and there, which has been perfectly sufficient for slight discomfort. Only took one pill, the first day. No issues!
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Howdy MACTAZ,
January 23 - BMX with sentinel node removal and immediate construction
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Hello 🐝 positive, what a great handle. 😁. Welcome, sorry you have to be here but we are happy to have you as part of our group.
Appears like you were just diagnosed several weeks ago. When I got DX in August I was so overwhelmed with the amount of questions I had and no where to go to get some answers. This sight has a number of different topics and so much information to help you. Also, if there is anything you are wondering about, just ask. If we don’t know, we can perhaps lead you to a place where you can get some info.
Take care, we are here for you
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santabarbarian, I’m so happy things are going well for you. And thanks for the info, it will help those that are getting a lumpectomy.
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borogirl, was this after they took out drains?
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Hello January surgery folks! I was reading along on this thread and wanted to add a couple of points regarding Sentinel Node Biopsies (SNB) during either lumpectomy (breast conserving surgery or BCS), or mastectomy. Everyone has a differing number of axillary nodes - ranging from a few to many. Most breast surgeons aim to take out the smallest number, but generally remove those nodes that take up the dye/tracer from the injection. In many cases this is one node or two, but sometimes it is several. Lymph nodes are encased in fat pads and the surgeon can't usually tell how many nodes are in the fat pad until it is removed - one of the reasons you see such a variation of the number removed. In a general sense, more nodes removed increases risk, but the risk can be dependent on how many nodes you have to start with. I had bi-lateral SNB, but on my cancer side the SNB was one node, declared clear in the OR. In the lab, where the more thorough dissection and slides are done, it turned out I had isolated tumor cells (ITC) in that one node. My surgeon, who was a pioneer of SNB and was a principal in the early trials, and a proponent of removing the least nodes possible, strongly advised complete axillary clearance because I was Her2+ and, at the time I was treated, neoadjuvent chemo was not being done routinely because Perjeta had not yet been approved for "early stagers" given along with Herceptin. I had ALND surgery 5 weeks post-BMX and I had a much larger positive node further up - mid range of a stage 1 breast lump. This is unusual to have only ITC in the sentinel and a larger positive node(s) further up the chain, happens in about 10% of cases. The large node was not seen on any imaging (including MRI) and never felt upon physical exam.. Also, levels 1 & 2, which are customarily cleared in ALND, yielded only an additional 11 nodes on that side. I am not a node-y person. You will see other people who have 30 axillary nodes, sometimes more. So, for someone like me a SNB with 3 or 4 nodes may represent more risk than someone who has a great deal more nodes because removing that number represents 25% of my existing nodes in those levels. Having the ALND did allow me to skip rads though, and I have no regrets because that larger positive node would have remained undiscovered. Something else also, those who have lumpectomy can have a SNB done post-surgically, but it is infinitely more difficult if you try to do it post MX/BMX because the dye/tracer needs to travel through breast tissue to the sentinel node, which is located in the axilla. Sometimes you will see people skip SNB for diagnosed pure DCIS where the surgery is MX/BMX, or DCIS removed by lumpectomy.
I would suggest you ask your surgeons about bras and camisoles - they will have differing philosophies. I woke up in recovery in a mastectomy camisole so I would not have needed to purchase one, but I was allergic to the fabric so I took it off when I left the hospital and wore nothing. For those who have immediate recon with expanders or direct to implant surgery ask your plastic surgeon, they are generally the ones who take over care post-surgically, other than drain removal and a general post-op check by the BS.
For clothing - button-up or zip-up worked for me, I wore track pants or yoga pants because they pulled on and off, and light weight zip-up hoodies. I also bought men's ribbed tank style undershirts and stepped into them, pulled them up and pinned the drains to the side seams, worn under the zip up things. I did not sleep in a recliner, I did fine in my own bed with a LOT of pillows. For showering an inexpensive plastic deck chair is good, as is a hand-held shower head. I strung my drains on a clean shoelace for showering, they have a plastic loop, and I tied a knot at the end and slipped it over my head like a necklace. Not all docs will let you shower with drains, but mine did. Put a few dishes, glasses in a place you won't have to reach to get, or even just use paper/plastic stuff. Get an insulated cup with a lid and straw - trust me, you do not want to have to clean up a mess when you knock the cup over, lol! It is good to have a little pad of paper to write down meds, or use a phone app - you may not remember when you last took something - there are also some printable blank med forms online for this. Also, make sure you get non-child proof caps from the pharmacy as long as you don't have little ones at home - those who have a MX/BMX may not be able to open the child-proof ones. I had a basket with tissues, phone, paper/pen, TV remote, chapstick, etc. so I could keep everything corralled. Also, my husband got a lamp dimmer switch so I wouldn't have to reach over to turn off the lamp, link below. If anyone has any questions, don't hesitate to ask - I know it is scary, but you guys can do this!
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Suzanna you are having the same procedure I had on 12/18, except I also had Intraoperative Radiation during the procedure as well to focus on the tumor bed. As for recovery the first week was the toughest, I slept in a recliner for 2 weeks, it was just more comfortable. I lived in button up tops and yoga pants. Now that I'm 2 weeks out I feel 80%, get tired because my body is healing and have to remind myself to not lift things or overdue it. Good luck on Thursday.
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MACTAZ - I had to wear the sports bras from the time I left hospital after MX to current time. I have prepectoral TEs with alloderm, so I think he wants the extra support, since it's just a layer of skin/dermal layer and alloderm holding up the TE's (although TEs do have tabs that are stitched down to chest muscle and inframammry fold to help hold them in place).
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Thanks SpecialK for the info. Can I ask a couple of questions - why didn't you decide to do radiation vs ALND and did you get lymphedema?
Borogirl, thanks for info. I had planned on getting measured prior to my PS but with you and SpecialK info I am going to wait and talk to him first.
This is all so confusing and scarey, appreciate everyone here and thankful for all the info and advice
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mactaz - your question is a good one, and a little complex to answer. At the time I was treated in 2010-2011 radiation in lieu of ALND was fairly novel, it was not being done that much. I was definitely aware of it, and discussed it with both my BS and MO at length because I didn't want the ALND - I was just starting to feel normal after the BMX. My docs are progressive and very cutting edge, but they were pretty vehemently in favor of the ALND because I was so strongly Her2+ and because I image so poorly. I had a palpable 2.6cm tumor - you could roll it between your fingers, yet it didn't show up at all on mammo. My MRI showed clear in the axilla, but their intuition and years of experience dictated the surgical approach. I still find it interesting that they were so immovable on the subject. My BS was speaking at a symposium in Japan when my SNB lab results came back and his PA called him there and my case was actually discussed among the docs at the symposium. Two other considerations were that radiation is generally detrimental for expander to implant based reconstruction - it has a high failure rate. I was already experiencing some issues with skin healing so there was some leeriness about radiating skin that was already misbehaving. If you look at my sig line you will see that I have had a LOT of surgery related to breast cancer. With exceptions for the original BMX, the ALND, and one aesthetic fat graft, all the rest of that surgery was for skin healing issues, loss of expanders and loss of implant due to healing problems. I was not a candidate for autologous (DIEP or other flap) recon due to multiple previous abdominal surgeries and lower body weight. Compounding that I have an extensive history of skin cancer - I have now had more than 40 of them. I had three that had to also be treated at the time of breast cancer diagnosis, but my history stretched back for 20 years prior to diagnosis with BC. Radiation is a skin cancer risk, so it didn't seem like a good idea. If I had done rads instead of ALND I would have also left a sizeable aggressive node left in place with the hope that chemo and rads would treat it. That would be the same as a lump in the breast that you have chemo and rads for but never have a lumpectomy or mastectomy for - too much gamble, and nobody would do that. This is, of course, hindsight, because none of us knew that node was there, but I wouldn't change my decision. Yes, I do have lymphedema, but I have learned how to manage it and I don't do much more than regular SNB precautions. I have sleeves/gauntlets but I don't wear them daily - I do wear them to fly, to the gym, or if I will be doing something with repetitive motion like painting with a roller. I still do all of my same activities, and have paddled in a dragon boat, hiked at altitude, I carry my own bags of groceries and luggage - I manage very well. For me, the lymphedema is a trade-off of successful treatment - I will take it over mets any day of the week. Lymphedema is also now coming to be viewed by some docs as an inflammatory response, not just the absence of nodes - this may also help explain why it only happens to some, even though many have multiple nodes removed. This makes sense for me as mine developed during chemo when I had a sudden body-wide swelling event. I follow an anti-inflammatory diet now and find that my lymphedema is much easier to manage. This approach is helping guide treatment and prevention of lymphedema but is still out on the horizon as drugs are being trialed, and there are some newer surgical approaches that are coupled with ALND - done simultaneously - that may help reduce incidence if ALND is needed.
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Thanks you so much SpecialK for the info. I’m really struggling with making a decision on what to allow my BS to do with regards to nodes. Your story does make me think about the longer term risks but I’m hesitant because I just don’t believe my BS is progressive or cutting edge. She wants to take all sentinel nodes and if any cancer cells are present take all ALND. While I trust her abilities for the surgery aspect, I think she is of a frame of mind the more you take the better and forget the consequences.
I will meet with another BS and my OC next week to get a 2nd opinion and talk about other treatment options. All my scans said nodes were clear but I do know that others had surprises. Currently I will have TE put in place at same time as mastectomy so I believe radiation will not be an option. I also have had melanoma, so your comment on skin cancer was also food for thought.
This is hard, but I know I need to make a decision then as I’ve seen you state many times, never look back. I so appreciate all the advice.
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