Lumpectomy Lounge....let's talk!
Comments
-
ChiSandy, I'm so proud of you for managing to lose all that weight! Dry side of Washington is no longer immune from the Covid-19 virus. Nothing in Spokane yet. But everyone is stocking up. My friends who are over 65 are definitely planning ahead since we're the most vulnerable population.
I do want to make a suggestion for an alternative to the MedicAlert bracelets etc. https://www.icemergency.com.au/?view=alternate. I have long found that MedicAlert is way to restrictive in the information you can put on your record. Like you, I'm allergic to most antibiotics. Was there a place to put the antibiotic I *can* take? Nope. The same with not having blood draws, BP or anything else done on your "bad" arm/side. A friend in Australia has a friend who started up ICEmergency 3 years ago. I immediately jumped on the bandwagon. The products are USBs and FREEFORM. You can enter all the information YOU deem necessary, easily update it. Do you have a pet at home that might need care? Enter that. I have not used MedicAlert since I found this products. I'm not part of the company, just a very happy, enthusiastic customer. End plug
Now for your 6 month update. That's great news. My MO said I would likely get little to no benefit taking anastrozole beyond 5 years so I've been off it. You have obviously had more challenges taking letrozole. Have you decided if you will go beyond 5 years? Do you want to stay on Prolia?
I do disagree about the SEs being less the later your menopause. I was menopausal at 45. I had 2 hot flashes maybe at the time. And none with anastrozole. My 5 years were fairly uneventful. So perhaps there is something else at work. Or maybe there's no reason why some have problems and others don't.
You sure have had your share of fractures. That's scary. And the other medical problems such as higher glucose, cholesterol and A1c. Wow.
My last visit with my MO is in June and then I am cut loose. That will be strange. Luckily I have a NP as my primary and she is top-notch.
Take care, Dear Friend!
HUGS!
0 -
My MO wants to see me every 7-9 mos. from now on, but no labs unless I go back on Prolia (they want to check calcium levels to see if they're adequate, but mine have always been at the high end of normal). My BS cut me loose, though--and my next mammo isn't due till Oct. (they will still do an ultrasound to check for further seroma shrinkage).
Peggy, your IDC was much smaller than mine, and the DCIS you had was only Grade 1. (I didn't have any DCIS). So I can see why you could stop the AI at 5 yrs.
I wear the Medic-Alert bracelet (the plate has my name, "Lymphedema R arm, no ndls BP, algy PCN Cipro Sulfa" and two "ICE" phone numbers) because it's a faux-Pandora so I have lots of charms on it. (I hang a heart-shaped medical tag from my real Pandora bracelet, since medical alert jewelry is not a "thing" in Denmark, where Pandora was founded). But I carry a more detailed card in my wallet--and uploaded all the info on it to the "Health" app on my iPhone & AppleWatch.
0 -
Sandy, we all find the right way to make sure our medical info is know to emergency responders. Good luck making all those big decisions!! And I appreciate your knowledge and support! You've made things so much easier for me!
HUGS!
0 -
Trying to figure out when my first year, hopefully, NED, will be. Do you date from diagnosis, for me 2/14/19, lumpectomy, 3/24 with clear margins, reexcision 4/10 for wider margins, end of radiation 5/21? Is there any consensus about this? I think I’m leaning towards 4/10( day after 86th birthday) but I don’t really know how people figure out their anniversaries.
Have been thinking about this because last year we went to Palm Springs on an already scheduled week vacation for a week right after my diagnosis and I was a total shaking wreck. We just got back from a week there now and it felt so wonderful to feel calm and grateful. Such a difference this time as if a year has passed, but not a year NED, unless one dates from diagnosis which doesn’t seem quite right
MO insistently stated that I should take AI for 5 years, no longer. Of course, why would a 90 year old continue to take it? So far, it’s been easy enough, very minor, if at all, SE’s, but it’s also only been 9 mos.
Sandy,On a much lighter note we've seen Audra MacDonald several times, the last being at Steppenwolf a few years ago, where during intermission she nursed her baby. She is so great. Also, I went to Dominican U, formerly Rosary College, for Library School. Was a librarian for several years, before going to Loyola for my MSW.
0 -
Hi Ladies
I am just about 2 weeks post op from a 2nd LX ( had one <8 yrs ago as I had no rads then)
Is this cording or maybe ' normal' in your opinions :FIRM Hard scar under the arm ( one node out- clean) VERY VERY firm!
OR do most of us have this rigid scar under the stiches ? I have forgotten ! ( I do see BS soon just want to hear what others feel when theuy touch under the arm this soon after surgery.Many thanks and best wishes to all!
Laurie
0 -
Laurie, my breast surgeon likened that firm area to "little workers in hard hats moving around in the healing process". I had that but it did resolve and the scar is not firm any more. Hoping for good healing for you.
0 -
Good to hear Beaverntx ... MAYBE it;s not cording after all - just not sure yet
THX so much for your reply!
(Was there anything you DID to 'speed up' the softening at all ?
0 -
Sounds like an axillary seroma beneath the SNLB incision--those tend to be more bothersome than the lumpectomy incisions. If it were cording, you'd feel a tightness down your inner arm, and sometimes even be able to see what looks like a rope or prominent but colorless vein. And cording can suddenly resolve with a momentarily painful "pop" as the lymph channel unclogs, followed by a tiny bruise or red dot a day or two later.
Don't try to "soften" that seroma--instead, take measures to cushion it. My BS' NP gave me a "protector pillow," made by local suburban volunteers. It has a velcro shoulder strap, so you can sling it over your shoulder & wear it between your armpit & inner upper arm. In a "kangaroo pocket" is a smaller mini-pillow, to slip between your chest & car's shoulder belt. You can get little disc-shaped gel ice packs (I saved the one from my biopsy) to slip under your arm too; and "nursing pads" for breastfeeding moms work well to cushion the edges of your bra.
0 -
keywestfan - Re: NED
The term no evidence of disease (NED) is often used with cancer when there is no physical evidence of the disease on examination or imaging tests after treatment. No evidence of disease means the same thing as complete remission or complete response. It does not, however, mean that a cancer is cured.
0 -
Some breast cancers in older women--namely hormone-negative node-negative DCIS treated with mastectomy--are in effect "cured" because no further treatment is necessary, and the risk of recurrence is so far in the future it would likely occur long past regular life expectancy. So my 73-yr-old friend was told by her surgeon after bilateral mastectomy.
0 -
Purple, much as ChiSandy said, I did not try to speed up softening but rather sought to support healing using a small pillow for support, keeping the area clean (patting not rubbing to dry), plenty of protein to help healing, and moving my arm in full range of motion (which I had but would not recommend over-stretching to do that). The incision in my breast was at the base of the inner lower quadrant so mild arm movement did not stress it.
0 -
THX ChiSandy
I see my BS WED. Was THINKING this was cording so I started to apply moist heat and massage/ stretch. (*Though it BEGS for ice!) This is what happens when you live 70 miles away from your BS!I'll wait until she lays eyes on it before I do anything else .
Laurie
0 -
Beaverntx and ChiSandy
How and when did this ' go away' ?
THX
Laurie
0 -
purple, I don't remember exactly but think it was pretty much gone when I started radiation about 6 weeks after surgery when my focus turned to protective skin care!
0 -
My axillary seroma actually burst when the "weight of my oversize breast" (to quote my BS' partner) pulled the incision open a day after the last Steri-Strip fell off. The partner (my BS was in the OR that day) sutured it (the NP wanted me to pack it several times a day and let it "heal from the inside out;" no way would that be possible with my travel & performance schedule, and also no way was I going to delay starting radiation). The stitches held and were removed w/o incident two weeks later, and I started my 16 rads sessions the day after that. I felt the first twinge of cording a week after I finished rads, but it popped on its own before I set out on our pre-Christmas Mediterranean cruise. (I was super-fanatic about wearing compression on the flights to & from). I saw the LE doc in early Jan. 2016 and had 6 sessions of LE massage OT therapy. By then, the axillary seroma (which had been the size of a tangerine when it burst) was the size of a walnut, then a large grape or olive, and then disappeared. (Took about 6 mos. in all). The mammary seroma (9cm of tissue had been removed, surrounding a 1.3cm tumor) had swelled to 20 cm., and began coming down in May 2016. By Dec. it was back down to 14cm; 6 mos. later 10cm; and now it's 5cm--and that's as small as it can get since the surrounding scar tissue has contracted and hardened.
But don't get me wrong--it was easily endurable.
0 -
Hello, newbie here. Had lumpectomy a week and a half ago (for DCIS with microinvasion), along with sentinel node biopsy (8 taken, all clear!) and ever since I've had some discomfort that I assume is normal but that perhaps you have some advice as to how to alleviate:
- tightness and pain in the relevant forearm (both sides, from elbow to wrist)
- partially numb area from past the armpit to the curve of the breast
- firmer spot near the lumpectomy site
- sentinel node biopsy scar is thick and lumpy
Thanks for your input!
0 -
Lumpykins - Sorry you have to be here for this reason, but welcome to Breastcancer.org! This is a great place to come for information and advice from other members going through similar experiences than yours! Until you get responses from other members, here is what we have in our main site on:
Hope this helps! And if you have questions, feel free to get in contact with us, we're always here.
The Mods
0 -
Lumpykins what you're experiencing sounds similar to what many of us have shared. I'm 10 months out from my lumpectomy and still have a fair amount of numbness. Also have the firmer spot--really for me it's the whole left breast and probably also due to radiation fibrosis.
I will say my sentinel node incision was terrible at first and now I can hardly see it--and it's no longer thick and lumpy.
What my breast surgeon and my radiology oncologist both told me is what you have at about the 1 year mark is what you'll probably have the rest of your life. So hang tight, many of the things you're experiencing may ease up or go away.
When you see your breast surgeon, do mention these to her/him just in case you have lymphedema. Always good to be proactive.
0 -
Thanks - I talked to the BS's nurse today and the nurse said I could massage with any oil I prefer, so I'll (gently) give that a go later. I don't want a scar tissue mass to glob up there. I am remembering that when I had a c-section years ago, an acupuncturist used heat on the scar to keep the fascia layers from sticking together, and that scar turned out beautifully with no issues. I think it is too soon for that, however.
I also switched from a regular bra today to an old sports bra that doesn't dig in too much in my shoulders and it lines up better with my scar location. Or doesn't line up. You know what I mean.
The year mark is interesting, thanks for passing that along.
0 -
Actually, maybe I need to wait a bit longer. I'm looking at some lymphedema prevention tips and as I'm still in the first couple of week window after surgery, it may be best to leave the area alone more for now.
0 -
Lumpykins, you've had nerves severed, so numbness is to be expected. When the synapses begin to reconnect, don't freak out if you feel "zaps" akin to electric shocks--normal too. For tightness, do gentle ROM exercises--wall-walking with your fingers. Stop when you feel too tight a pull, before the point of pain. You had an unusually large number of nodes biopsied, especially for DCIS, so it's no surprise that axillary scar is thick & lumpy. You may develop a swelling, aka "seroma" (fluid-filled) before it goes back down. There will probably be a seroma in the breast as well, since they remove a relatively large chunk of tissue around the tumor to ensure clear margins. Seromas develop when internal tissues are surgically removed--nature abhors a vacuum (as do my cats) so it fills the void with fluid, a mixture of serum & lymph. It, too, will get larger before it gets smaller. Hang in there.
Don't massage either scar yet, as it's too soon. Make sure you moisturize. No shaving your armpits. (It'll take a few months for hair to grow back, especially after you finish radiation). If you do need deodorant, use a spray rather than a stick or roll-on, which requires too much pressure. Don't remove the Steri-strips if they haven't fallen off yet. You might ask for a referral to a lymphedema (LE) therapist for a preventive consultation, and instruction in very gentle self-massage (as my OT described it, like petting a skittish cat).
0 -
Re deodorant, I used cornstarch--put some in a knee high stocking (was actually shocked I had any buried in my undie drawer), and made a knot so it was like a puff. Every morning after my shower, I patted both armpits with it (figured I'd stay balanced on how things felt under my arms). Sometimes I would do more after work but not usually. It worked pretty well and helped my skin stay dry.
0 -
Lumpykins- I also had 8 nodes taken out. They thought they had only gotten 4 at first. I developed a seroma at the SNB site. It came up about 1.5 weeks after the surgery and took about 4 months to resolve. My BS drained it once but it came back up. It's totally gone now.
The zingers are a pain but the numbness in my underarm (still there after almost 9 months) bothers me more. I used deodorant on my non BC underarm and left the other one alone.
I hope you heal fast and have minimal SE
0 -
I had 5 nodes taken out (they had aimed for 3). This puts me at a greater risk for lymphedema.
It took 13 months before the feeling in my underarm returned to nearly normal. My BS had told me whatever feeling you have at a year is what you will have forever. After 5-1/2 years, I finally had some PT for the muscles that had been rearranged by my surgery. What a difference! Wish I had done it years ago. Amazing.
HUGS!
0 -
What ChiSandy said. I too had seroma(s) after lumpectomy that in my case, had to be treated before I had radiation. I had to go twice to have them remove the liquid so that they would not harden during radiation treatment. I was given the impression that mine would be permanent if left to their own devices.
0 -
I had 23 nodes removed when I had my lumpectomy in 2017. I also had a drain inserted for about 3-4 weeks. I did not expect to have a drain and I hated it, but maybe it prevented me from getting a seroma?
0 -
They took 2 lymph nodes, but I still had to go in to have it drained manually. I still have a small hard lump that they question when I get an examination or mammo. I guess it came back during radiation treatment.
0 -
I see some women posting that along with sentinel node biopsy that was clear , a number of other nodes were removed as well. I don’t quite understand it. I thought that the negative sentinel biopsy means that no more nodes need to be removed.
That was the case for me 12 years ago when I had lumpectomy. Now I am facing another one in the other breast.0 -
I think that the reasoning behind removing the sentinel and the following lymph node was to test to see if the cancer had gone beyond sentinel. My (what turned out to be) sentinel was pretty large and they were surprised that I felt the lump in my breast and not the lump in my lymph node. Also, the breast tumor almost doubled in size while waiting for insurance to get their act together (seemed like a small lifetime). My discovery until chemo wait was 57 days. Lots of tests and insurance not wanting to pay for one of the targeted chemos. That prior auth cleared right before they infused me. Went from tears to shaking from I don't know what on that day.
0 -
ijl, I think the extra nodes that end up being removed even with a clear sentinel node are nodes within the breast itself that just happen to be in the area of the lumpectomy. That was the case for me. I had one sentinel node removed intentionally, but three other lymph nodes were incidentally removed because they were in the tissue that was removed with the cancerous cells, so a total of 4 nodes were tested: 3 from within the breast and 1 sentinel node in the armpit. I remember a physical therapist telling me that we are all different in terms of how many lymph nodes we have, so the possibly of more being removed with the lumpectomy changes based on not only where the cancer is but also on the individual. Sorry you are facing this again.
0
