Lumpectomy Lounge....let's talk!
Comments
-
KYPhoto, we all keep updating our profile as more information comes in. Hard waiting for that path report, isn't it?
HUGS!!!!
0 -
I'm recovering from a fairly straightforward pair of lumpectomies (no node involvement), but I'm noticing that after the second excision, not just my breast but my pectoral and trapezius muscles are sore, and my armpit aches.
None of this is terribly surprising, mind: I had two surgeries to the same spot in three weeks. I expected to be in more pain the second time than the first (though all is relative. I don't claim to be in more than merely annoying amounts of pain.) and the body's web of nerve pathways is a wondrous strange thing. Just curious about why but I have not the vocabulary to formulate a query. Just realizing I should have been more specific with the surgeon about activities post-surgery.
0 -
Queen, Make sure you baby that left arm. Did you have lymph nodes removed (no node involvement to me means there was no cancer present in nodes that were removed)? If so, you should be "walking" your arm up a wall until it starts to feel uncomfortable, trying to stretch everything. Achy armpit is normal. Sometimes even down my side will be noticeable - not really hurting, just "there." If the surgeon had to go really close to the chest wall, that would explain that discomfort. It all sounds quite normal to me. However, if it is worrisome, then please do contact the surgeon.
Since you had two lumpies so close together you will probably want to take it easier a bit longer than you anticipated. Baby that side and poor girl. And get as much rest as possible.
It is very difficult to know how to ask the questions you want answers to. It's a whole different world and the vocabulary is brand new.
Take care and HUGS!!!
0 -
Peggy: see, it's hard to ask questions when you don't know the underlying vocabulary and assumptions! I had to even go look up the name for "that cluster of nerves that feeds from the neck through the shoulder and down the arm". The surgeon didn't need to either biopsy or excise entirely any of my lymph nodes.
I'm guessing it's "two surgeries close together causing inflammation throughout the area, which is impinging just enough on the nerves that I feel like I've bumped my funny armpit" Not dissimilar to carpal tunnel syndrome, though a different joint and a different cause.
0 -
Queen, if you have access to Dr Susan Love's Breast Book that will help you with the vocabulary and answer some of your questions. A new one is coming out in September but even at 5 years old, some things don't change and the information is valuable. Probably can get it from your library.
As most of us find out (the hard way), nerves annoyed in one place manage to spread the joy to many other areas. Was your surgery at about 3 o'clock?
List your questions and use your own words. Don't try to be medical. Sometimes that backfires because we pick the wrong word and send the doc off on an entirely bogus course. Just say, "my damn side hurts here and here." Let him/her figure it out!
HUGS!!!!
0 -
Depends on which way you look at it! But both surgeries started about where the bolt holding the hands in place would be, and slid off approximately horizontally toward my armpit. But definitely a) tracking down the new edition of Love's book and b) not worrying too much about asking the doctors, if the ache hasn't started receding along with the incision swelling, I will, but won't worry about until then.
0 -
Queen, the current edition of Dr Love's book is 2010. New one comes September (not yet; it's on my buy list). It is excellent. Probably more information than you need or want but is good to have.
II can see why you are hurting up to your armpit.
If it's tolerable then fine. If it gets worrisome, ask the doc!HUGS!!
0 -
My RO said in don't qualify for the shortened radiation profile because I am overweight and have large breasts. Being overweight makes the shortened therapy very hard for some reason. My RO wrote an article about it.
0 -
Dang, Tresjoli2! You're obviously seeing an RO with great credentials. Interesting that large breasts make it difficult, isn't it?
HUGS!
0 -
Tresjoli2 Maybe that's why it wasn't offered to me! I am overweight and have DD breasts (a lot of it is augmented breast implant and fat from weight gain.. not much breast tissue, hence the implants).
I will be having another consult with RO to ask specifically why or why not since I don't remember if we discussed it. I did not have anyone to go with me that day to help me remember everything
0 -
MizMimi, quite a number of women record their onc sessions on their phones (with the onc's permission of course). You might consider doing that.
HUGS!
0 -
Just caught up reading posts. I've several comments. First- Apologies: I'm going to be frank about rads. MizMimi, as to avoiding rads: the RO's as a whole seem very obtuse and like to make light of radiation's SE. There are very real, long term risks to rads, and as I look back, even though I do not have any of them, I think I would have gone the mx route myself if I knew then what I know now. One of the women in my chemo cohort has radiation fibrosis in her lungs. That is a nasty, incurable possible SE. I'm 1-1/3 years out from rads (following chemo) and my immune system is still very weak (cat bites, bee stings = cellulitis). There really isn't true informed consent about what rads can do, and given the terrified state most of us are in at that point, we simply aren't assertive enough. As for the Canadian protocol, beyond other requirements, you can't have big boobs. For those considering IORT, please be aware that it slows healing from the lx—radiated skin simply doesn't heal as fast. So if you have it, be prepared for a longer recovery period. Nobody told me to expect longer healing, so I kept wondering why I was such a baby. Then a year later, in passing, someone said well, of course since you had IORT your healing took longer, WTF?
As for bras, it was my biopsy site that stayed tender the longest! After surgery I got front closing sports bras, and even with those had to wear an undershirt beneath them until I was fully healed. I was back in underwires after 9 months since, as my RO said, I require them for support (32ddd, which means I'm not fat, I just have really big boobs). I've seen some chat about never wearing wires again, but my Drs don't agree. Make an appointment at Nordstrom for a fitting of good, pretty bras (two per year covered by insurance in California!) including a silicone prosthetic if you have a dent or no longer have a matched set. You may want to hold off on the prosthetic until you've settled down from rads swelling.
For intermediate oncotype scores—what I did was get a mammaprint test too. Mammaprint has no dreaded intermediate, it's either chemo or no. Makes it simple. Less simple was that my insurance only paid for my oncotype (27). I went ahead with the mammaprint, reasoning that if I had to pull from my retirement account, fine. The bill was $4,000. They billed the insurance repeatedly, sent me a few bills, then after 1-1-2 years I got a phone call. I figured it was the last call before sending the bil for collection: nope. They offered to settle as fully paid if I would send them $800. Mailed the check that day! I'm very grateful I had the test, since I was able to go into chemo without any second thoughts.
As for rushing into chemo without being sure: don't. It isn't something to mess around with. Of 12 women who stay in touch from my chemo cohort here on the boards, 3 of us have serious, lasting SE from the chemo to the point that we are still disabled. That's a whopping 25%! and doesn't include less serious, likely permanent damage like numb feet.
For those of you just beginning this journey, I apologize that I'm so plain spoken about SE. It is not my goal to scare you, but it seems to me that there's just a little too much sugarcoating. Some people do really well and bounce right back from all this. Most of us don't exactly bounce, but we get through it. Yes, we reach a point where we feel "normal" again, it's just that our normal gets reset. The entire process is absolutely doable, and if it isn't feeling that way, get yourself antidepressants, anti-anxiety and/or sleeping pills: whatever you need to get through this. The initial diagnosis is terrifying, and trust me, you will get past it. It wasn't until I started chemo that I got my Ativan rx, but I sure could have used it earlier!
0 -
Maggiecat-- I am happy to hear that you did well with your radiation and it did not damage your heart. I hope the lung issue subsides! I hope I get to be considered for the Canadian protocol, but I might not be a good candidate. I will be talking to the RO again on Monday to find out more.
kayfry-- I am going to OHSU, which is a very well known University and you may have heard of the Knight Cancer Institute? But they are shortstaffed on RO's right now and they are about one hour from me, so I will do the surgery there but they recommended I do radiation closer to home.
PoppyK-- I will be reading that article right now! Thank you!
0 -
PontiacPeggy---I totally should have done that!!!!!!
Palameda-- I appreciate your candor about rads and I did not know that you heal slower from IORT. I probably won't be a candidate for the Canadian protocol due to large boobs. I appreciate your info
0 -
Palameda, you are right. We don't all sail through our BC treatments. Chemo seems to leave lasting SEs for most everyone - some annoying, others more major. Radiation long-lasting SEs are not a given but obviously they happen.
We all try to make the best decision with the information we have from our reading, talking with others and our oncologists. And what is right for you may not be right for me. It's a very individual decision. But once made, we should not look back. That is the way to going crazy.
I'll second you on getting antidepressants, anti-anxiety drugs. I think that we are all rather reluctant to admit we are depressed and need help. Who wouldn't be depressed knowing you have cancer? Don't be afraid to ask for help. You gain nothing by grinning and bearing it!
HUGS!!!
0 -
Hi, PoppyK. It's good to see you again, too! That's very cool that your sons chose the Horsemanship merit badge to work on at camp! I find being around horses, grooming them, etc. is very soothing. Sometimes teen boys might think it's so boring, compared to whatever else it is teen boys like to do these days
I have two (grown) kids, and it was my daughter who rode. My son tried it, like, once and never showed much more interest, so I love it that both of your sons enjoyed learning about horses.0 -
Tresjoli2, interesting to know! Well, it makes some sense to me, since I was told that having small boobs was an advantage for rads, that I would probably have an easier time of it because of that. But I hadn't read anywhere that the shortened protocol can't be done on larger women, either. I'm sorry, that kind of stinks!
0 -
Large boobs? nuts. I'll have to ask the RO about that when I meet him monday~
0 -
I'm still learning stuff I didn't know before from you ladies. I will admit that, for having any kind of breast cancer, I've been very lucky compared to many, and I can only speak from my own experience. I had DCIS, no invasive BC, and because of that, my BS didn't feel a need to do any node removal or biopsy. So I only had the one incision. I was lucky enough that the first time got clear margins. I didn't get a seroma. I was lucky in being able to do the shortened rads protocol, and although I can't say I had no SEs from it (I did have short-term ones), I feel fine less than 4 months after finishing rads, and I don't know of any longterm SEs I have, anyway.
All that said, we're all different. MizMimi, it makes a lot of sense for you to do your rads closer to home if you can. I would have had to drive about 35-40 minutes each way to do the longer protocol locally (but easier driving conditions), vs. about 50 minutes to Hopkins unless I got really stuck in traffic. Since it seemed there was constant road construction and lane closures on the interstate during the month I was doing it, that wasn't a lot of fun. Being able to finish in less than a month made it worthwhile for me, but if you can do it closer, I'm sure that'll be much, much easier. The thing about rads is that it hardly takes any time once you get there, but it's 5 days a week, so it has a tendency to kind of take over your life. I hope you can get to a place where you feel comfortable with your decision. Not to sugarcoat anything, because having to do this sucks, but you will get through it.
0 -
MizMimi, I had 33 rad treatments. Luckily, the center (which is on the grounds as the hospital I use) is 10 minutes away. Unluckily, for most of my treatments, my DH was in the hospital, very very sick (he had surgery and got pneumonia). So I would get to the hospital at 7AM, sit with him until 8:15, get my car and drive the quarter mile (as the crow flies much closer), get my treatment, drive back and be with him by 9 unless it was a day when I saw the RO. I was already exhausted so didn't notice any extra fatigue. The staff at the radiation center was absolutely wonderful so it made a bright spot in an otherwise very dismal time. For about 4 weeks, I did that schedule. My first week and last week DH was not in the hospital - he was at home and then for the last one he was in rehab (and now is in a nursing home). I didn't find the treatments taking over my life because my life was already a mess. I don't know of any SEs, had extremely mild redness and that was it.
Everyone has a different experience so what Kay and I had may be different than yours. But we chose radiation because it KILLS CANCER and that's the whole point - at least for me.
Stay positive!
HUGS!!
0 -
I'm no good at posting links. But his name is Dr. Abram Recht and he is the head of radiology at Beth Israel and is cross affiliated with Dana Farber. He wrote an article about it for a local paper here. If you Google him he has lots of interesting articles, but this was an article about 5 or 6 cites in on Google from 2015 that he wrote for wickedlocal boston. He is completely OCD which I love in a radiologist.
0 -
As Peggy said, radiation kills cancer cells. I did rads because I had a higher-grade DCIS, with comedonecrosis, and because the risk of recurrence is significantly reduced by radiation, shown in many studies, and because if I were to get a recurrence, there would be a 50% chance that it would be invasive cancer this time. I discussed all of this with my BS, whom I'd chosen because I felt he was very highly qualified, and so once having made that decision, I was pretty inclined to follow his recommendations. It's interesting about the breath-holding technique, and the differences of opinion as to whether it's helpful or not. That's one of the most difficult parts about this whole thing, that the "experts" don't always agree. I'm very glad I asked my RO prior to starting treatment about the heart exposure, and that the treatment plan designed for me was able to leave my heart out of the radiation field altogether. As I said, I'd have been happy to try holding my breath, but they don't currently support that practice where I was. It was obvious when I asked about it that they were well aware of it, but were basing on other studies or experience that suggested it could be more detrimental in altering position. I also couldn't have my treatments on my belly, because my breasts are too small for that to work, so I had to go with what I could do. I think it worked out okay, at least so far. No guarantees for any of us for the future, but I think that's the case for everyone.
0 -
The big problem cancer treatment faces is this: we are surviving! In the past treatments often offered a couple more years of life. Now we are going on to live another 30 years or more and expecting quality of life in addition to quantity. The field of cancer survivorship is really bereft of research and data. It's pretty darn incredible how little the Drs know about the long term effects of their treatments. The data all compare survival statistics, which is all well and good, but less relevant to the patients than whether that survival is pleasant. Unfortunately, it is unbelievably hard to find comparative data on QOL following different treatments. It's like with the AI's: there is a slight advantage to them over tamoxifen in survival, but up to 50% of women stop taking them. Why? Because the SE are so bad, but the Drs call this "noncompliance" which has the ring of us being bad little girls for not doing what the docs say we should. It would be wonderful to see studies that compared QOL outcomes along with survival curves. Only then could we make truly informed choices.
0 -
Amen, Palameda! My dear mom was rare in many ways - one was she lived until 2008 after being diagnosed while in her early 40's, in 1974. Her treatment was horrid, she suffered the worst SE's imaginable, and she took it, but always said she hoped she was paving the way so her daughters and others wouldnt go through this. I'm glad she died before I was diagnosed, she would be so angry and crushed to see how little things have changed. Yeah, yeah, I'm grateful things are better, I'm happy to be alive and with my DH, DS and DD, but I have a brain and can see whats wrong. Thank you for putting this in words for us. Linda
0 -
Hi, again! thanks for this site and for sharing the stories. All of this info, coming from you who know what you are talking about, is so valuable. You have inspired me to dump my post lumpectomy surgery bras (hell, undies, too!) and to go lingerie shopping. Good bye to radiation camisoles,too. They got me through, but I'd like less material and a little more support, but I cant go back to underwires - too uncomfortable for me, and my physical therapist and oncology massage therapist strongly suggest not binding or stressing that area, for lymphodema reasons and comfort. I'll let y'all know what I find. Linda
0 -
Oh, yeah, the post-lumpectomy bra search. I've spent a ridiculous amount of time on it, and bought way too many items, really. But it seems like one more step to normal! I finally found some bras that fit me well, even the new me, are comfortable and somewhat flattering—so much so that I cancelled my PS consult, as I already posted, because I got this covered (literally, haha) now, and why would I have more surgery now for no good reason? But yeah, I think it was the bras, which of course required new undies to go with . . .
0 -
kayfry - i meant to thank you as you inspired me to postpone some appointments until "Later". Not the important ones, but I don't need PT right now, my eyes and teeth can wait another couple of months, I am SICK of looking at my calendar and seeing all these medical appointments!!! My DS is off to college next month. Off to see a movie with him this afternoon - priorities, right? Happy Saturday to all, Linda
0 -
Palameda, do you know of ANY articles that look at treatment outcomes over the long-term? I think, for example, that hormonal therapy is so widely used without very many studies that I'm aware of looking at long-term SEs. I'm not taking any hormonal and didn't have to make a decision because it wasn't indicated for me, but I probably would have declined if it had been.
For those of us with DCIS, it's disturbing that the docs really don't have any way to tell which DCIS is likely to be a problem and which will never cause any problems. So we pretty much all get treated the same as if we had invasive cancer, with surgery and rads, at least. If one day I hear that, oh, whoops, you would've been fine with no treatment at all, I'm going to feel very, very cranky.
0 -
BookLady, happy to help! Since I finished rads on March 30, I've really been enjoying NOT thinking about cancer and cancer-related appointments all the time.
0 -
I am so over doctor appointments. My MO's office called me last week and said we need to set up an appointment with the MO, and I said why? They said we will find out and call you back. They haven't called yet, and I for sure won't be calling. I asked about follow up scans and they said not yet, so I see no reason to add another appointment to my schedule. They also wanted to schedule an appointment with a doctor to evaluate my swallow reflex, and also for neuropathy. I scheduled nothing, going to give my body time to heal. Right now I feel like I am on their books for how many doctors can we refer her to. Other than herceptin infusions every three weeks, I have declined all appointments, etc. I want to live my life, not go to doctors, waiting for tests, being nervous, etc., only to have them come back and say we will watch and see, which is all they ever say.
I'm in rebellion!
0
