Lumpectomy Lounge....let's talk!
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imorris - please post your stats.
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I had partial mastectomy with reconstruction of right breast for stage 3 TNBC. All margins and axillary clear. This was done back on Feb. 13. I have had a lingering tightness in my axilla area. Started Physical Therapy 2 weeks ago What a difference. I can now swim overhand, reach into cabinets without feeling the tightness and pain. Feeling much better. (Didn't improve my golf swing though)
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Martaj,
Glad to "meet" a fellow golfer! You are doing great if you are already past that feeling of tightness and pain when reaching into cabinets and getting out on the golf course! I finished all of my active treatments last May and had lingering tightness and pain when reaching until just very recently. I had some cording and a seroma which likely contributed, but they are finally gone. As far as the golf swing, mine was quite a mess last summer lol! However, the good news is that just last week, I hit a drive that rivaled my best one from before my diagnosis. I couldn't figure out what I had done differently, but then all of a sudden it hit me-I realized that for the first time since surgery and radiation that I felt no pain or tightness in that pectoral muscle or armpit throughout any part of my swing. Healing can take much longer than we anticipate. I would have considered myself healed long ago, but upon realizing all of a sudden that my golf swing is back, I understand that additional healing was still taking place. Most of my tightness was in the area where my surgeon pulled some tissue from just under and behind my armpit around to give a better cosmetic appearance, but I'm happy he did that because I'm pleased with the results. Be patient and stick with your physical therapy; you'll get there! Congratulations also on clean margins and clear nodes!
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I have 2 questions. My lumpectomy was in April and radiation finished in early July. The area closest to my arm (outer aspect of breast and area between breast and arm) is still quite tender when pressed. I told my RO today and he didn't seem concerned. But I would sure like to know if others have had this too. When does it stop being tender. Also, my RO said that I have some breast edema and to do the massage (which I have been bad about). If it gets worse I am to let him know. Is there anything besides the breast massage that I should be doing? I don't want it to get worse.
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cm2020: I finished radiation in April and I am still tender. I had radiation on opposite breast 12 years ago and i remember it took at least 6 months for the tenderness to go away. My RO also told me to massage my breast. feel wierd massaging my own breast LOL but have been doing it and I feel it helps. The radiation causes scarring of tissues and massage breaks them up just like massaging a scar on your skin. I have my first mammogram in 3 weeks. I was worried sick about the pain back 12 years ago. Squishing my radiated and cut on breast but it wasn't bad at all. What we have to go through!!!!
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cm2020,
I still have a burning sensation in the area, sometimes it goes away and then returns. My MO says it could last 10 years or more.
Susan
9/16 Lt. lumpectomy 7mm pure mucinous, grade 1, stage 1, ER+/PR+ Neg HER-2
radiation/arimidex 2 years
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quinnie and thecargirl Thank you guys so much. I feel much better knowing this is normal and getting your input is very helpful. 10 years! Oh I am really glad I asked here about it. Gosh I do dread my next mammogram! Ouch...even the thought makes me hurt. I hope it is as easy as yours was 12 years ago quinnie! Good luck in a few weeks and I hope it is pain free and all clear.
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truthfully I had lumpectomy And rads about Five years ago and it is still sore. It takes some getting used to. Go easy on your self.. :-
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I had lumpectomy, SLNB, and short-protocol rads almost 5 years ago. My axillary seroma took several months to shrink and stop being sore, but my armpit is still numb. I got a large seroma in the "tumor cavity" of my breast that caused the side of the breast--which had been and is once again the smaller one--to enlarge to the point where it was slightly larger than the "normal" one. Took four years to dry up and shrink. I have scar tissue surrounding the now-empty cavity, and it freaked me out, making me think it was a new lump till the radiologist & surgeon were able to talk me down off the ledge. I still get "zaps" from reconnecting nerves.
I did have slight lymphedema in the arm & hand, but PT & OT taught me to do manual lymphatic drainage (MLD) self-massage. The lymphedema went into remission and hasn't recurred, and since the lymph nodes in the clavicle & breast were part of the massage "path," the MLD massaging jump-started the shrinkage of the breast seroma. It took time--another thing that helped (besides patience) was wearing a leisure bra for sleep, with a couple of "Swell Spot" quilted velour pads strategically placed over the seroma. (They're made by Solaris--my OT gave me mine).
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I cannot remember how long it took for my arm and chest to feel better, but it was a slow fade. If you can get your doctor to refer you to a physical therapist who specializes in breast cancer patients and lymphedema, I highly recommend it. My PT was a blessing and really made a huge difference in my recovery.
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Thank you all for the additional info and support for the pain I am still having. Luckily there are no signs of lymphedema in my arm. Just some breast edema. I am doing the daily 10 min massage religiously now. It isn't comfortable but I am gentle and doing the best I can. Ugh...it is hard to believe the pain can last for years! It is reassuring to hear from you guys and know I am not alone.
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I am going for lumpectomy in the morning for invasive lobular breast cancer with a sentinel node biopsy. I will find out Sept 1st what type of radiation will follow, implanted or full breast.
Most days it doesn't feel real. I have been avoiding the phrase "I have breast cancer". I just want to get treated and move on and pray it never comes back
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Gleason1....Good luck with your upcoming surgery and radiation. I know exactly how you feel about the whole thing, it is the same way I have felt since my diagnosis in March (and April). It still doesn't feel real. Honestly I didn't feel like a cancer patient until I got to radiation. Now that radiation is over I am back to it feeling like a bad dream and not my new reality.
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Gleason, as we say here on BCO, jumping "into your pocket" for your surgery tomorrow. I know it doesn't feel real, but there will come a time when you can go an entire day without thinking "I have breast cancer." It did for me, sooner than I'd thought. Right now, take it one step at a time and be your own advocate. Remember to rest up after your surgery and not overdo. And you can be excused if you decide to give yourself a treat or two (as long as your doctors say it's okay) once you get home.
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Welcome, Gleason1. We're sending you good thoughts on your surgery tomorrow, and hoping for a quick, smooth recovery! it does take some time to get used to being part of this club, but we're all here with you.
The Mods
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Thank you all to supportive comments. My pathology report came back with both sentinel nodes have cancer. I cannot do the 5 day internal radiation now. Appointment with surgeon today , yesterday with radiologic oncologigist and in the near future with medical oncologist. I am discouraged but not depressed. I just have to fight harder
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Gleason1, sorry for the news you did not want. One step at a time... Sounds like you are taking appropriate steps. (((hugs)))
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Gleason, sorry to hear you're node-positive; but if a "second dip" into the chain comes up negative and your main tumor biopsy is hormone+/HER2-, you may still be a candidate for OncotypeDX testing--which could exempt you from chemo. If it's any consolation, breast brachytherapy (internal radiation) is not without its side effects (including a slightly higher chance of infection & breast lymphedema). It can also be a PITA to have those catheters poking out, or having to hang around the hospital longer--twice a day, at that. External rads do work and are tolerable--and its side effects are manageable topically.
We'll be "in your pocket" for whatever treatments come next. You should be seeing your medical onc. (MO) ASAP. Please post your diagnosis (type of breast cancer, stage, grade, hormonal/HER2 status, full nodal status--i.e., how many positive out of how many eventually biopsied) so we can better assist you. You can do this via your profile in your Dashboard. Moderators can help walk you through it.
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Gleason1, sorry for the rotten news. Listen to ChiSandy. She is one of the most knowledgeable people about BC, I know. You definitely can do this and we are in your pocket all the way.
HUGS!!
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Gleason1...I am so sorry that both nodes were positive. Sending you lots of gentle hugs.
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Gleason1- it's news you don't want to hear, but you're on top of it. Pontiac Peggy is right, Sandy is a wealth of information. We're in your pocket, you'll get through this.
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I'm so happy to have found this forum, but still trying to figure both it and my situation out. Let me know if I'm not doing this right.
I was diagnosed a couple of weeks ago with DCIS, except with "microinvasion." The tumor itself is 0.7 mm which is small, but with the microcalcifications around it (which they also want to remove) the area comes to about 3.2 cm. It was initially seen on a mammogram, and I then had a fine-needle biopsy, as well as an ultrasound and an MRI.
My breasts are very small (A cup) but I'm fond of them. I think I would much prefer a lumpectomy, but the surgeon seems a little doubtful--because of the small size of the breast and also something about it possibly extending into another quadrant, which I'm not sure I understood but am going to ask about again tomorrow. The good thing is that there is no sign of anything in the lymph nodes, and whatever surgery I do they plan to do a sentinel node biopsy.
Two more complications--hormone receptors are triple negative which I have read is not a good thing. The other thing is that I already have another kind of cancer, a rare lymphoma called Waldenstrom's Macroglobulenemia, which is incurable but usually slow and pretty treatable; I had chemo and immunotherapy for it in 2016 and had six years of peace. Now, wouldn't you know, it's decided to get active again. The bright side of that is that I would be having chemo anyway, so that is not an element of breast cancer treatment that worries me much.
I guess I AM worried about whether I should be pressing for a lumpectomy when ultimately I might end up having to do a mastectomy anyway (if he is unable to remove it all with clear margins, when there is not a lot of breast tissue to begin with). I like this surgeon (he explained things very thoroughly and took his time), but I do wonder if many surgeons might want to do the surest thing medically and are not as concerned about the things that are bothering me (length and inconvenience of recovery, drains, time off work, inability to drive for a while, possible loss of sensation in the chest area--and the finality of it). Not so worried about scarring, etc., I think, or how it will look. And husband is supportive of whatever I decide.
I AM scheduled for a genetic counselor next week (my regular oncologist thought it might be a good idea), and also a plastic surgeon, in case I do want to try to reconstruct something...
People here recommended Dr. Susan Love's Breast Book and also The New Generation Breast Cancer Book, by Elisa Port--thank you! They are both great (haven't finished the first one yet).
Anyway, sorry for this flood of information! I'm feeling pretty stirred up. I would love to hear people's experiences in similar situations.
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talk to the plastic surgeon. Maybe they can do a lumpectomy and then later on do some fat grafting to restore the shape/size? So sorry to hear you are here, but people here are wonderful and always willing to listen and offer kind words. Hugs
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Isabel1865, sorry you had to be here but welcome anyway. To answer the questions I can, I am also an A cup. I had about 5 cm removed for 9mm tumor. Surgeon did a great job. I have plenty of boob left. I highly recommend you opt for a lumpectomy if your surgeon agrees it is an option. Once you have a mastectomy that breast and a lot of chest muscle is gone. With a lumpectomy, if it is necessary down the road, you can still have a mastectomy. But if it isn't needed, you still have your breast. Even the women who have gone on to have their breast removed say they would go with the lumpectomy first.
BTW, you'll find that SLNB site is quite annoying. I found it more so than the lumpectomy incision.
You should also check out the Triple Negative forum. They can help with first hand information for you.
If you can, please take time to fill out your Profile and then go to SETTINGS and make each and every item PUBLIC. We also like knowing where you live. Often there are other BCO'ers nearby or there are care option available to you that may not be elsewhere.
Good luck and HUGS!
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Thanks so much! This is very encouraging. That was sort of my thought--if the lumpectomy doesn't work, I can still have the mastectomy, but the opposite is not true.
I had filled in the profile, but somehow had overlooked the public/private options...I hope I've fixed it.
Thanks again, it's so helpful to know there are different views on this dilemma.
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Welcome, Isabel1865! We're so sorry you find yourself here, but we hope this community can be a source of support for you as you begin down this road. We're all here for you!
The Mods
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Ha ha, yes, the club no one wants to belong to, but it's nice to find myself in great company.
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Isabel1865- sorry you had to join the group, but you'll find a good group of ladies full of support.
I too was an "A" and opted for lumpectomy. After surgery my BS had to tell me she didn't get clean margins and I needed a reexcission. At the time she explained because of my small breast she wasn't sure if she could keep it a LX, I may end up with a MX. I told her I trusted her and if I woke up and had the MX I'd know she did what she had to do. I think the numbers are 20% don't get clear margins and require reexcission.
The long story short - kept it at LX, got the clean margins. I have a "divot" at 12 o'clock that I can live with. It's going on 3 years and only once in this time I had an issue with clothing - I returned a bathing suit top that hung just low enough that I felt my "divot" was easily seen.
You'll get through this. As you already know, you're stronger than you think. Best wishes to you.
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Hi Isabel.
Are you having neoadjuvant chemo? I have IDC - triple negative as well, so neoadjuvant was the treatment for me. Is this an option for DCIS? If so, you should consider it. It shrank my tumor substantially and I was really pleased with the lumpectomy. Recovery time was also minimal
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Isabel, I'm gonna talk you down off the ledge. First of all. unlike with invasive ductal carcinoma (IDC), triple-negative is fairly common with DCIS. And many times they don't even test DCIS for HER2 expression. "Microinvasion" does not necessarily mean "invasive ductal." Unless invasive ductal (IDC) is found, you would not be given chemo these days. Triple-negative (or HER2+) is much more concerning with IDC.
You might want to ask for an "oncoplastic" breast surgeon, who can get good results with a lumpectomy in even a small breast. (Amazing what they can rearrange in there these days). You might even get an autologous fat transfer (from another part of the body) as a partial reconstruction if necessary. You also would not be prescribed endocrine therapy (i.e., tamoxifen or aromatase inhibitor), since that's only for hormone-pos. bc. After lumpectomy, you'd be advised to have radiation--but if you elect a mastectomy, unless your nodes were positive you wouldn't get radiation. With mastectomy, you could also have immediate full reconstruction (most often, tissue expander for eventual implant). Just remember, you can always change your mind after lumpectomy and go for a mastectomy, but not the reverse.
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