July 2017 Surgery
Comments
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Received my results today...I don't have clean margins. Two of the four samples taken still showed signs of cancer. Big frowny face! The good news is everything is still showing just DCIS--no signs of invasive cancer so that is a positive. My BS is optimistic that another LX will take care of it once and for all ; but if not I will need a MX. Has anyone had more thanone LX and if so, did that take care of things or did you eventually obtain clean margins with an MX.? Any feedback would be appreciated. I am scheduled for an LX on September 12 but can always re-think which surgery to go with. Recovery (thus far) has been pretty easy and I like still having my breast... plusses for LX.
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gigilala I hope your appt goes well! Shelabela that is great news about the drain removal & healing well!
My pathology results came back and all margins are clear (4 lymph nodes & vascular system) BUT they are still recommending radiation because the size was 7.5 and anything over 5 is automatic radiation recommendation. I will see the radiologist in a week or so but my gut feeling is that I am not going to have radiation. I feel like since I had the BMX & nothing in my lymph nodes and all other margins are clear that I shoukd be ok. I also will be taking tamoxifen. Anyone else been told t
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Hi lynae23. I'm still waiting on my pathology results, but my BS made it clear long ago that I could have negative lymph nodes (BMX last week showed that I do) and ideal results everywhere else BUT she'd still recommend radiation based on my tumor size - roughly 7 cm. My gut says no radiation. I've been researching potential short- and long-term side effects of radiation and find too few answers and too many stories from women who were misled or whose complications were ignored and/or made worse by ignorance in the medical community.
I also haven't found any hard numbers on how much radiation would reduce my risk of future recurrence. But the hypotheticals are interesting: If radiation would reduce your risk by 50% and your risk of recurrence is 3%; then your risk afterward would be 1.5%. Is that significant enough?
For me, as a triple negative, my general risk of recurrence and death are higher than other types of BC for the first 5 years and then it drops significantly. Some say if TNs make the 5-year-mark, they're practically home free. If the radiation success numbers are geared more toward 20 year rates than five year rates, it's not that relevant to me. But I need more info and I do plan to meet with a radiation therapist. I know I'm not an expert on cancer. But the strong gut feeling I've had about radiation isn't something I'll just ignore either.
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I will have radiation. 25 treatments. I wasn't very happy but being triple +, with 1 lymph node that was affected in the beginning and the size of the tumor (which I found out was bigger then I was originally told) they recommend it. I am all for anything to prolong my life.
A question? My radiation oncologist talked about lymph nodes deeper in chest/ neck area being affected. Anyone ever here about that? I didn't hear anything about this before yesterday. And of course I forgot to ask then.
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yes, I started rads Monday and when I asked what the radiation field was, so I could make sure I was applying my topicals to the right areas, the tech showed how high they would go and called the area the "super clavicle" and said there are nodes there. Seemed like it was just under the collar bone. Nothing in the neck area though.That was the first I had heard of that. The way she said it it didn't sound out of the ordinary. I'll ask the RO when I see him Monday.
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Willis, sounds like the area my RO showed me. Upper chest area. I didn't realize they would radiate the whole area like that
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Shelabela, neither did I. I feel like I ask questions, not a lot but I do ask as much as I know to ask, and I always get these surprises. Not a huge deal but sheesh!
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4 drains out yohoooooo
The doctor cut me again he did delay nipple delay
He told me about this surgery today I wasn't ready but everything is fine now
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i will have temporary expander implant soon and final reconstruction after radiotherapy
How about you girls?
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Path report is in.
Not great, but could be worse. Initial conclusion of no negative nodes was incorrect. Three nodes were removed. One has a small contained cancerous mass in it. About 3 mm. The PA I spoke to said that it's being contained is an important and good thing. My BS may remove more nodes for testing. TBD
My margins are negative. But my tumor had about 3 cm of residual cells, so I didn't have a complete response to Chemo. The BS does think she removed all of the cells. A follow-up treatment besides radiation seems likely; possibly the pill version of Chemo.
I'll find out more tomorrow.
This nasty bitch called cancer better be prepared for a fight. I won't go down without one.
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Give that Bitch hell, FelineMum
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Felinemum I am sorry to hear the results weren't what you were hoping for. So has this changed your mind about radiation? I had always told myself that I would have radiation if it was in my lymph nodes or in my cardiovascular system. Since it is not I most likely will not do radiation. I went through and read a lot of comments inbox about it and just feel that it is not for me. I think I will take my chances. I will most likely be taking tamoxifen as well.
SHElabela I was told by the radiologist when I met with her a couple of months ago that they would basically be radiating in the chest & clavicle area because there are lymph nodes there and those are not being tested or removed by surgery. She told me they do that just in case the cancer spread up instead of the direction of the armpit.
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Thanks Linwentz!
Lynae23, I felt the same way about radiation and lymph nodes. Now that I know I have a positive node, I'll be doing radiation. The radiation will be over my heart, which makes me nervous. As does the likelihood I'll have more severe burns/sunburn effect due to my very pale skin that burns even with sunscreen properly applied, floppy hat on, etc. But at this point, I will try it.
I'll be talking to the same PA later today about my BS's recommendations. If I'm given a choice between traditional Chemo or the pill form, I'd choose traditional. My side effects were tolerable. I meet with the BS next week. Today's phone call is to give me a chance to absorb the new information and think about my options.
Triple negative breast cancer. Middle finger to the nurse who tried to sell that diagnosis to me as a good thing. My 5-year survival odds already were roughly 75%. Not having a complete response to chemo lowers that number by 30-40%. My math skills are lousy and it's before 6 a.m., but a 3-to-1 chance I'll still be alive at 45? This sucks.
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Felinemum I hope all of your discussions go well today. So did they say you will have to have chemo again (I believe you said you already had it)? Just curious why. Sorry that you will need the radiation as well. All if this stuff sucks & is so confusing. Having to make all of these decisions when we sometimes just dont know what to do is what frustrates me the most. I still have to meet with my surgeon and then my radiologist next week before I make my decision I'm doing radiation. I also still have four drains in because my PS would not remove any this week even though they were only producing 5 to 10 ML
I meet with him Tuesday so hopefully he will take at least two of the strains out. It makes it so difficult to get around and take a shower.
I am still having to take pain pills at least once or twice a day. I also get the stabbing pains in my chest and I have such tightness around the top of my breast area and then stabbing pains under my arm almost where the drain is. How are the rest of you doing that have just had surgery?
I feel like we all deserve a major vacation when we are all done with our treatments!!! Best wishes to all of you ladies! Hugs!!
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ladies, I know a few of you have received not so great news regarding margins and lymph nodes. I'm so sorry that we have to go through this, in some cases over and over again. I worry about having adjuvant chemo because I won't have any way of knowing that the chemo worked other than my check ups. I think most on this thread had neoadjuvant chemo, so in that I'm different as I'm just starting that phase of treatment. I won't have radiation unless I have a recurrence.
DH and I have tickets to a Santana concert tonight. We were really on the fence about going and my husband had a kidney stone last weekend but he passed it, so we decided to give it a shot. It's a relatively small concert close to home and we have aisle seats close to the entrance. This will by far be the biggest thing I've done since before surgery. I'm excited and scared. I am also worried about seeing acquaintances who don't know what's going on with me. But both surgeons as well as the MO encouraged me to go, so we are. The surgical oncologist will actually be at the concert. -
toughcookie, I would go and enjoy yourself.
I am feeling a little more human everyday. I had my Herceptin on Wednesday and was very tired.
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toughcookie,i would go..
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Toughcookie, I hope you saw Santana last night!
Lynae23: I describe my pain and tightness as feeling like I'm wearing an underwire bra under my skin that's too tight and keeps poking me. I don't know if that helps. I've also had a sharp, burning pain under my right arm that streaks down my rib cage and hurts so much. My PS's nurse said it means my drain is hitting a nerve and when it happens, to move my arm. That moving it will hurt, maybe even more at first, but it'll get the drain off the nerve and stop that pain. I move my arm kinda like I'm doing the Chicken Dance. It works and now when I feel the start of that pain, I move my arm ASAP.
I'll be doing oral/pill Chemo. The med's called Xeloda. When I googled it, I read the manufacturer's information and started crying because its FDA approved use is for metastatic breast cancer, so I assumed I'd be getting even worse news when I meet with my BS this week. I've had teardrop blood cells in my weekly blood work too, which I knew can be a sign of metastasis. The only explanation I got when I asked about those was they hopefully would resolve themselves.
I was so mad I shot off an angry email. Luckily, a nurse called me almost immediately to explain I'm not metastatic. That my BS uses Xeloda off-label for TN and it's used to avoid recurrences or lengthen the time between them. My BS has had very good results with it and gets non-responsive patients referred to her because of that and her very active participation in clinical trials. And while my results weren't what we hoped for, overall they weren't capital B - Bad. My node cancer was very small and contained. Clear/negative margins are wonderful. And yeah, a complete response would've been ideal. My diagnosis remains the same.
I'll be doing radiation. Between the oral chemo and expanders, I don't know when that will start. I know it'll be at least 6 weeks before I've healed enough from surgery. The oral chemo will last six months.
I hope you're all having healing, relaxing weekends.
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hi all,
anyone have a feeling of discomfort with tissue expanders? im 3 weeks post op and i still feel like i am wearing a very very tight bra with underwire. hurts where the underwire is supposed to be that its hard to breath. i am already filled to 400 cc during surgery and i wont be needing fills anymore. thanks for listening
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kae_md99: I don't have tissue expanders
I saw my surgeon yesterday he said he can schedule me for next surgery next Friday he said may be he will put a temporary implant
He said I still need 2 or 3 more surgery I was 🤤🤤🤤🤤🤤🤤🤤🤤🤤🤤🤤🤤🤤🤤🤤🤤🤤
I thought reconstruction is only 1 surgery...
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Hi Kae
I am almost 2 weeks post op from my BMX and have tissue expanders too. They hurt very bad especially when I am up doing stuff. It feels like someone is squeezing my breast area off. I agree its like having a very tight bra! I hope it gets better. I don't know if I can handle the pain/pressure for 2-3 months before my implant exchange.
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lynae,
exactly what i was thinking,i dunno if i can make it to 2-3 months before the exchange with this pain. i was already off percocet and was toughing it out but last night was bad that i had to take percocet again... i really hope its from the expanders and not the alloderm . atleast the expanders iatr temporary.. i will pray we can make it! hugs
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Tomorrow will be 4 weeks out for me, it has definetly gotten better over the last week or two. I was expanded to 300 during surgery and another 100 fill two weeks ago, that's all I'll have. Definitely uncomfortable but the final fill made the edges better, still have some muscle tightness. I'll have mine a year because I'm doing rads now but if they continue to get more comfortable over then next few weeks I'll be fine. Not as bad as I was expecting from some of the posts I have read.
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kae, I will be 3 weeks out from BMX with te's and I still have a lot of pain and discomfort. It feels tight around my ribs and when I sneeze or startle it hurts really bad
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toughcookie,
we are the same,pain in ribs also.cant walk fast . can"t even do hard household chores. gets better when i slouch do you guys do exercises?my PS delayed mine due to pain but my ROM is pretty good...lets all hope pain will subside...
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Well it sounds like we are all in the same boat. A man must have created these uncomfortable things!! Lol! I hope the pain eases for all of us soon!! Hugs :
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Do your TE hurt when you lean over? Weirdest feeling.
I think i overdid it yesterday. I was in a lot of pain this morning. I'm so stubborn
Hope everyone had a good weekend
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Hello Everyone, *Warning TMI- sorry* I had my surgery (lumpectomy) July 26th, had my stitches out Aug 3rd. At that point around the stitches was getting red. (My skin is ridiculously sensitive). Doc took out stitches, and put on steri- strips. All looked fine. He said to remove them in three days if they didn't fall off on there own. Yesterday, (steri-strips were still on) I noticed it was oozing, and I was having mild pain. Today, I got up took off steri-strips and found that my incision was not only oozing, but was opening up. I called the on call Doc. He said to wear a tight sports bra and put some gauze and a bandage on. He told me if it was still the same in the morning, to call my Surgeon, that he may or may not put a couple stitches in. I'd prefer not to have any stitches put in as we are leaving Saturday on vacation. I figure if I don't need stitches today, why tomorrow?! Has this happened to anyone else? It makes me a tad nervous too. Once my kids go back to school I have to go back in as my margins weren't clean.
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I had my UMX and ALND on July 25th. The surgery itself has gone quite well, and recovery is moving along as expected.
The pathology was worse than expected, however. My tumor, which showed up on MRIs as 5.5 cm, measured 10.5 cm. My lymph nodes had shown no involvement on multiple MRIs, but in surgery I had 4 of 35 showing metametastasis, with one sentinel node quite large.
With HER2 positive cancer, I'm quite worried. The two types of chemo tried before surgery (TCHP and AC) were apparently not effective. I will be having five weeks of proton radiation. I meet with my oncologist tomorrow and hope to get some answers about whether we can try more chemo now. It seems to me that it's likely that cancer cells have spread, and I'd rather address them while they're floating around out there before they metastasize. I'm not sure that's possible with how chemo works. I was hoping to feel relieved after surgery, but that hasn't happened.
Right now I'm trying to focus on healing from surgery and thinking about how to get back into my life, including being back in the classroom this fall. I've had family here to help for the last 2 weeks and they're gone now. It's just my husband and me and I have the feeling rough days are ahead.
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I am so sorry to hear that Snowfall! Did you have a PET Scan before surgery or chemo?
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