September 2019 surgery support group
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Hi Trying2StayPositive - Ah, I missed that this one was grade 3, I was just looking at the original Dx in your profile. My oncologist today did say that mine being only grade 2 was one factor in her recommendation for hormonal therapy only, but she also said the IDC being so small was another major factor and mine are both much larger than yours (though still stage 1). It will be interesting to hear what recommendations you get.
So, yeah - no chemo for me! I'm relieved, both because I was hoping not to have to go through chemo (because no one actually *wants* chemo) but also because while it seemed a little borderline to me based on the oncotype, with her explanation of all the clinical and other factors in play I do feel confident that this is the right choice in my situation regardless. One interesting thing, she said "we believe" (though I don't know if "we" is specific to this cancer center, or medical oncology more generally) that for the strongly hormone receptor positive cancers that even in situations where there seems to be some benefit from chemo, that benefit is coming from the chemo shutting down the ovaries/"chemopause" rather than from anything only chemo can do. So, for me she recommended tamoxifen only for now (possibly to change depending on what happens with my periods as I am nearing the age my mother reached menopause), though she did also present Lupron + AI as a more aggressive option if I really wanted to do something more. She did think that was overkill given the comparative side effects vs. everything we know about my cancer, and had also discussed this with a colleague at the main hospital cancer center (I'm at a suburban branch of the cancer center). I agreed - especially since with my family history I'm more concerned about possible bone issues from an AI than blood clot issues from Tamoxifen, and I remember Lupron making me feel really disgusting when I used it as part of IVF several years ago. So the tamoxifen prescription has been sent to my pharmacy and I don't see the oncologist for another year unless there are issues (though I do follow up with the nurse practitioner in between). Feels so weird! Hopefully side effects won't be too bad.
I am still feeling really weird on my mastectomy side, and my sternum is really sore still. I had thought it was largely from the surgical bra closure pressing there but I think it's the stretched pec muscle attaching there and the bra was just annoying it, because it's not any better now that I'm in a sports bra with a back closure. (Note - I still don't have the mobility to actually reach around and close in the back, I fasten it on backwards and then pull it up on my mastectomy side first, breast side second.) My underarm feels like it's sticky, even right after washing, different from the numbness sensations. I hope that goes away soon. But all in all mostly just still tired. I'm alternating Tylenol and Motrin and now not even using narcotics at bedtime, but that hasn't made as much of a difference in the fatigue as I expected.
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G1973 - I think we were typing at the same time! It does sound like they did remove 3 lymph nodes to send to pathology along with the breast tissue. I had 4 taken out as part of my SNB at the same time as my re-excision lumpectomy, and then another one kind of came along for the ride on the mastectomy when removing the further edges of the breast tissue.
That must be so frustrating to think they were clear based on the initial look in the OR but have the pathologist find cancer in them. I'm sorry you have to have another surgery so soon, too! I would imagine the treatment plan specifics are going to depend a fair amount on what they find with that second surgery. Do you talk to your surgeon again before that surgery?
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JenInMass- My surgeon is supposed to call me today with a definite date for the surgery. I’m just really nervous that they found more cancer in my lymph nodes and already did chemo. During chemo my lymph node did respond to it and appeared to be clear, and now this.
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Hi Ladies,
I am officially one week post mastectomy on my left side with reconstruction on my right. I'm feeling a wave of emotions I didn't anticipate. I think I'm even sadder now than I was before. I cry what feels like an ocean of tears every morning and, for good measure, before I go to bed.
I haven't had my "first look" yet and while my husband bathes me while I'm blindfolded, I silently sob, mourning the breasts I once loathed and wished were perkier and fuller.
I still haven't received my surgery pathology report back yet; they said they took about two nodes out to test with a total of 22 that were looked at (I'm not even sure what that means honestly, I am afraid to ask). I'd previously been "clear" in my lymph nodes during scans, but it worries me now that it may have spread. I'm terrified of the phone call with the path results and more bad news that I know I won't be able to handle. It's all I can think about right now and it consumes me. I've read and re-read my scans and results about 100 times hoping to find something new that will tell me that I'm going to be okay.
To boot, we are doing another round of IVF starting Monday (I'm 35, no children, married 3 years ago) because we were only able to get 2 embryos from the first round.
I wish I knew the lessons in all this, that these tears would actually be worth it somehow. I wish for happier days.
I hope everyone's recovery is going well and you receive the news you hope for.
xx
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Hi vmb
Sigh. Yes. This is an emotional rollercoaster to say the least. At every junction I sobbed and sobbed, with fear and worry. And, then as each stage passed, I felt a tiny bit better. In fact, today is exactly week 2 from my BMX surgery and I took my first shower by myself w/drains out yesterday! :-) (truly the little things...)
Are you having reconstruction of some sort? If you look at photos around the web, you'll see that generally speaking most women look a lot better just a few months later... albeit no feeling there - (which really gets me upset the most) - but you WILL heal. You WILL feel better. You WILL regain control! This all WILL pass!
I have tissue expanders in now (oh joy) and will do implants in a few months. We did a "nipple sparing version" here and actually I did not have any dressings at all post-surgery (no wraps, no bras) since PS wanted me to see and monitor. So, yeah, I saw results from day 1 - for the better or worse. bleh. Overall, I thought boobs look better than I thought they would actually, although it feels like looking at a gallery painting - clearly not mine. Anyway, in my opinion (again, I didn't have wraps) try to take a look when you can and just get it all out now.. so you can start the positive healing process. You can't go backwards, so just one foot in front of the other..step by step.
I had IVF many years ago, my twins are turning 13 in January (teens!) and I had them at age 40 so hang in there! Where there's a will, there IS a way! It does seem like a lot to do all at once though - emotionally AND physically. So, be really really kind to yourself. Maybe try to meditate - breathe out stale, old, sadness, and breathe in positivity, and light, and growth, and new beginnings -- picture those happy cells growing and the yucky ones vanishing! This is the beginning of a new chapter in life for us all.
Vent as much as you want here. I found that it helped as I felt like I was burdening my husband, mom, etc. with my fears and tears. Hang in there!!!!
PF
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Hello,
Must have been perfect timing as I just received my path results. 3 tumors, largest at 5.5 cm. Still ER+/PR+, Her2-. Grade 2.
Margins are negative. All 4 lymph nodes that they took out tested positive for cancer, unfortunately.
Now, I must wait for my appointment on Friday to figure out what to do -- more surgery?
I can't believe this news.
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vmb- looks like we are in the same boat. The only difference is my is a grade 3. Let us know how your appointment goes!
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Heard from surgeon's office. I had an undetected area of DCIS found in my pathology. However, it's too close to my nipple and I might be losing it. In the grand scheme of things, I know it's not terrible.....just disappointing.
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Belinda ..yes ..that is disappointing !
I had my last drain pulled on Monday ...but So can feel/see fluid building up...I have an appointment for next Wednesday ..so I guess I will have to have it syringed then ...always something 🙄
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Lucy, are you taking ibuprofren or some type of anti-inflammatory. I think that has helped me since getting my drains removed.
Follow up appointment for me today at the plastic surgeon's office.
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Hello all - I'm one week from my right side mastectomy and ALND surgery.
vmb - This is absolutely so emotional. I cried tears of loss a lot even before surgery, and plenty have flowed since. I had no reconstruction, just a flat closure, and no dressings on the chest, just over the drains. I can't avoid seeing myself. It's still so unsettling and feels like I'm looking at something detached from me. It's like I can't look at my chest in the mirror and also look into my own eyes without something covering my chest. It's not really a part of me yet. Even my still-there left breast looks foreign to me without its mate. It will take lots of time to fully accept what's happened. Now it's just the acute stages of recovery.
PF - thanks for responding to my mini-rant the other day. I'm slowly letting go of the anger about the lack of communication. It can only hurt me, not make the situation any more "right".
JenninMass - are you in Mass as in MA state? Maybe we're neighbors!
I still have quite a lot of pain, especially nerve pain in my underarm and triceps area. I have almost used up the 20 narcotic pain pills the surgeon gave me, plus a few leftover ones from a shoulder procedure earlier this year. I'm trying to make it on just Tylenol today, but it hurts. I'll see the surgeon tomorrow. Don't know whether or not to ask for more narcotics.
I'm also on edge today waiting to hear the pathology report. Don't know if they'll call me if it comes in today, or if I just wait and see if it's ready tomorrow. I want to call but I feel like the surgeon is already annoyed with me because I ask SO many questions. If it's not ready tomorrow and I have to wait until next week, it will be a really rough weekend. I especially need to know how many nodes were positive. I don't know how many nodes they took, but I know some were positive for cancer involvement on US and MRI. The waiting and the physical pain is so hard.
One drain really hurts in my upper chest where I can feel it under the skin. I think I can get them out tomorrow, but the whole area is so on edge I'm dreading what that's going to feel like. Yet I can't wait to have them out. And I can't wait to have a shower!
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Lovemy4Kids - hang in there. The adjustment to the different looking chest is so traumatic. I'm definitely not there yet. Lots of tears here.
For what its worth, drain removal did not hurt me at all. The pain from drains for me was mostly where they were stitched to the skin because they had to remove the stitches, but that's quick. The PA that pulled the tubes said one of mine was the tightest (on the inside of my body) that she's ever seen. It still didn't hurt. She kept apologizing as she tried to get it to loosen/release suction. It just felt weird. Like the way they feel inside when you move a certain way. Like a tendon rolling over a joint. I think that's because there's nerve damage from the surgery so it's still mostly numb.
I don't know about anyone else but I find it so weird that my skin can be so sensitive in spots where I am numb. Like tricep area and side boob. Every touch to my numb spots gives me chills... not in a good way, lol.
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HopeWins - Yeah, I keep trying to describe that to my husband - it's numb....but it hurts. A lot. It's so strange and unpleasant. I am hurting so much today, I hope it gets better soon.
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Hey all! I'm 1 week out from BMX and SNB. My sentinel node did show cancer cells during the surgery so they removed 4 more nodes. My surgeon called and said all cancer was removed and all other nodes were clear. She is presenting my case to the local tumor board to see what recommendations other doctors have. I did get 2 drains removed today and feel so much better. I got my 1st look today after the bandages came off and I was not as devastated as I thought I would be. Happy healing everyone!
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Halezma- That is great news!
Hope wins- I agree getting the drains out feels wierd. I thought it felt great once they were out. I still have 2 in..... next Friday I will be free from them
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vmb- Monday I am scheduled for an auxiliary node dissection. I think she wants to take out 10 lymph nodes. After that I might be on a chemo pill as I have to wait 4 to 6 weeks before radiation. I still have my expanders in and the plastic surgeon needs time to expand me. God thatsounds weird!
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having my surgery on monday, very nervous but glad to be getting started and find out the final pathology and what lays ahead.....
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dewey..good luck with your surgery Monday .You'll feel much better when it's over and done with .
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dewey - It's natural to feel apprehensive. I certainly was. But you'll be glad when it's finally behind you and you know that you're doing what your body needs to be healthy again.
G1973 - I feel bad for you that you have to go in for more surgery so soon and unexpectedly. Hope you're holding up ok.
I got my drains out today and it barely hurt. Just a tiny bit. What a relief! I'm still tender and sore all over, but so much more comfortable overall.
Also got my pathology report. Surgeon took 10 lymph nodes and 3 were affected, same number they predicted based on imaging. I'm so relieved there aren't any more. I had two tumors and they were each just about the same size as the ultrasound and MRI had measured back in May/June even though I've had four dose-dense AC infusions already. Kind of disappointing. And a bit confusing because the larger one definitely felt smaller to me after chemo. But it makes us all glad that I had the surgery now in between AC and Taxol instead of waiting until the end of Taxol like originally planned. So overall I'm happy and ready to get on with the healing from surgery and get going on Taxol soon.
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Hello All,
I really hope all are doing well. I have not been able to log in as much, so many things to take care of before my surgery this Monday. One thing I did find therapeutic, was to write a letter to myself and my left breast. It helped a lot more. Tonight we also talked to my son about the next few days, and when mommy goes into the hospital, and about Cancer in general, he absorbed it well, but we all sat and cried together for a bit. All in all, going into the weekend with a positive mind, and hopefully a calmness will come over me.
I wanted to ask you ladies, what questions did you ask or your family ask the doctors when you were in recovery, meaning after the surgery when the doctors come and speak to family about status and how the surgery went?
I hope everyone is staying strong, and getting through better than they thought, I wish you all pain free healing, rest, and relaxation through each of your journys.
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Helpful to read this post. I hope you are healing well.
Even though we don't know each other, I think we are all sisters in an odd way, through the breast cancer that invaded us in all the different ways that it can, the feeling of this community, gives me pause and sense of peace.
Health, and positive vibes being sent to you.
Regards,
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I'm at day 11 after right side MX and lymph node dissection. Had my two drains out Friday which was day 8. Woke this morning and ran my hand across my upper chest and heard "squishy" noises. Like a tummy gurgling, only in my upper chest between the MX incision and my collarbone. So weird. Also feel extra tight in the axilla and feel a marble sized lump near one of the drain holes. I'm pretty uncomfortable. Talked to the nurse in the surgeon's office and she said it's fluid buildup, which I figured, and a small seroma. Anyone have them develop this quickly? I'm just going to wait for now, but if it really bothers me I could get them aspirated. I wonder how common this is.
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Hello Lovemy4kids,
I had lumpectomy and sentinel node biopsy on September 18th and had fluid build up under my arm and around my chest on the evening of the 19th. It felt squishy like warm water balloon after a couple of days it started moving up back of arm towards my shoulder. My underarm felt like it was frozen at dentist. I called my breast cancer surgery centre described my symptoms and they told me to come in. After check up by doctor she said it was mild seroma and to continue my exercises and massage area. She also said it would probably go away in three weeks Our surgeries were different but the fluid buildup was pretty quick in my case.
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Love ..I had my surgery 16 th ..last drain out last Monday and have the fluid build up too ..☹️ I see my doctor tomorrow and I'm really hoping he drains it.
knewit ...thinking of you and your surgery ! The doctor just came and told my husband that the surgery went well , and I was in recovery ..
Gi1973 and dewey...thinking of you both too !
Hugs to all
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hello ladies - Home from surgery feeling a little sore but still on good meds😁. Should have pathology results soon, positive thoughts are needed there. Lucky my me got another drain. Sending love and hugs to you all!!
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PF,
Are you still here? What a sad day to complete this post!!!
I just met surgeon, sentinel node 1/1 positive, sad!! And it is grade 2 now, it was grade 1 in biopsy report. And it is 21mm now, and it was 8mm in biopsy report. The receptor status does not show up, so shall be the same as biopsy report. ER+. PR+. HER2-.
Anyone knows how the surgeon decided the numbers of the sentinel nodes removed in the surgery? She explained some, but I just did not catch up. And this one is 3mm.
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Hi Cathy
I'm here! (not as much as before but definitely checking in.) So glad to hear from you I was wondering what was going on... but bummer on this result. But don't panic. That's just the first node right? Are they going to look at further nodes from there? (they took 4 out when they did mine - not sure how they decided. In fact, surgeon said she thought was 3 out and lab told her actually it was 4??) What did they say in terms of next steps? And, keep it in perspective - maybe it's not tiny, and different than you were expecting, but the tumor is still very small in the grand scheme of things. And receptor status is good too! Did they get clear margins around it?
All I can say is to just keep putting one foot in front of the other... move forward.. stay positive. Keep healing! (how are you feeling by the way?). This all will pass!
Had my oncology consult today. Will start Tamoxifen - 5 years. 6 month check ins w/her. So, seems doable, and I'm crossing fingers that I tolerate the drug well. Healing is going ok but sore still, weird nerve pains on/off, and still feel like I had a truck roll right across my chest. Finally started sleeping flat on back instead of propped up so that feels like a major accomplishment.
Please check in again when you have more info. I/we are all here for you - no matter what. Sending love & light.
PF
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Hi PF,
Thanks! Margin is negative, I also wondered how do they decide this. Besides, grade 2 replaces grade 1, 2.1 cm replaces 8 mm. Not sure if already expands to the other part of the body. Cannot believe this area is on six months followup, can we trust the screening program?
Glad to hear you only need tamoxifen, if my node is negative, I may face similar treatment. But that is a dream!
Friend who went with me today, whose brother in law also got his report, not good, what a sad day! Hopefully tomorrow is another day.
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cathy67 - so sorry for the bad news. For the number of nodes - when they use the tracer fluid and then inject the radioactive dye, they use a Geiger device in the OR to see where that dye is going when it leaves the breast. The first node, or set of nodes, are the sentinel node(s). Some women have only one (I did too) and some women have 3 or 4 or 5, etc. However many light up, the BS takes. The theory is, if the cancer cells are going to travel outside the breast that's where they'll go first. Theoretically, cancer cells have to go through the sentinel nodes to get anywhere else in the body, so if the SNB is negative, they assume lymphatic system is clear and bc is contained within the breast.
Since you had a positive SNB, they may want to go back for an axillary dissection (the nodes further up the line of drainage behind the SN). I'm sure you'll be having these convos with your team. Was your preliminary SNB negative? Again, so sorry about your news. You must be so disappointed.
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