Lumpectomy Lounge....let's talk!
Comments
-
Peg I too have had some dizziness sice last week-hit my halfway (15 of 30 rads) and noticed it at 13 and not only at treatment but also when I sleep at night. RO said it is my ear crystals and to see an ENT and not a SE of rads. Haven't gone to ENT yet- it seems to be a little better now. I do have major redness all over my left chest area to my underarm - more annoying than anything. Burning and itchiness gone with cream I was given. 11 more to go now
0 -
MM68, my dizziness was just on rising from the table after the rads. No other time. Ear crystals? Okay. Glad all SEs are fairly under control. HUGS!!!
0 -
Funny, I feel the same way. We all have different diagnoses, but a lot of women here have had IDC as well as DCIS, for example. My experience has seemed so easy compared to many—yours too, I think. No SNB, for one thing. That's a big one. No chemo, which is huge. Only a single lumpectomy incision, with clear margins. For me, not even any hormonal therapy. I do feel almost guilty.
But yet. For me, and I'm sure for you, this thing has still been life-altering. I kind of thought of DCIS as "not quite cancer," no big deal. But it turns out that it's at least as big a deal as some more "advanced" breast cancers, because no one really seems to know how to figure out the best way to treat it, so we throw everything we have at it. So my body has been changed by surgery (even though the surgery was pretty easy, as surgery goes), and now I'm doing radiation, waiting to see how I'll fare, hoping for the best.
I put off my mammogram by 2 years(!) because I had an unusual insurance issue that made it difficult to get health care. No family history of bc, so I really wasn't that worried. A lot of second-guessing now, but the RO who gave me my diagnosis told me that, given my tumor grade, it likely wouldn't have even shown up on mammogram a year ago. Maybe the same for you? Whatever. No looking back, only looking forward!
0 -
I've been to see the MO and the RO—got the ol' one two punch, you might say.
Understand that I began this journey with only the info from the BS. First it was relatively good news which was a lx followed by the balloon radiation (5 treatments in five days). After the MRI and the discovery of an additional tumor, the balloon biopsy was off the table. I asked very specifically about the benefits of the lx compared to the mx and was told that in my situation there was no evidence one was better than the other as regards life expectancy. BS assumed, I guess, that keeping my breast was important to me, but at my age I was quite happy to part with it were there any advantage. What was not pointed out was that if I had the mx there would probably be no need for rads, and I didn't know enough to ask that question. Knowing what I know now, I deeply regret that I did not have the mx.
During my surgical follow-up the BS suddenly said there would probably be chemo, but I could refuse it if I wished. Why this was never mentioned before I don't know but he didn't give me time enough to even think to ask that question. I still didn't freak, keeping an open mind that the MO might say something different, but she felt that I should have it because there was no way to know if the cancer cells had travelled elsewhere. (How do they ever know that, and what about all the other people who just have an lx and rads?) She's talking intravenous treatments 4 times, 1 every other week, then 1 each week for 12 weeks, and a minimum of 5 years of, I think she said, aromasin—it was something beginning with an A. She wants to order an Oncotype dx (fits my situation to a T) but as of this moment it is not known if my insurance will pay for it, and her office is looking into that. Meanwhile I am to have a PET scan and a MUGA scan.
MO is female, nice enough, gave every possible chance to ask questions, but she seemed to have already made up her mind that in the absence of conflicting information from the Oncotype dx, if I can have one, I must have chemo. One of the reasons was my Ki-67 score which is 69.
Today I saw the RO. He was adorable and charming, apologized profusely for having made me wait for 45 minutes and gave me plenty of time to talk, vent, cry—the first crying I have done throughout all this. He seemed to poo poo the Ki-67 score, but since I was still sniveling I didn't get to ask ay more questions about it. In the end, the story is still the same: after 20 weeks of chemo, 33 rad treatments, and a warning that left side radiation has more SE possibilities.
I am pretty done in right now.
0 -
Surprised, I had left side rads (33). Not much in the way of SEs. Granted, we don't know what will happen down the road but we never know that, do we? Don't assume that you'll have SEs with the rads.
However, I can see why you were blind-sided about chemo. What a shock. Hoping that your insurance will cover the Oncotype test. I have Medicare and a Medigap policy and it was covered. That does provide very helpful information. Here's the information from this site on your Ki-67 test Ki-67 Maybe it will help. I did not have a Ki-67 done.
Take a deep breath. Sit down and write out all your questions. WRITE THEM!! It is far too easy to forget everything when faced with a doctor. If possible, have someone go with you for your appointments. Read Dr Susan Love's BREAST BOOK. It is invaluable and will provide good, solid basic information to you. Don't make any decisions until you have all your questions answered and feel comfortable with the recommendations. At my center, there is a breast board and they come together, review your case and come to a conclusion on what should be your recommended course of treatment. You CAN reject any treatment, of course.
Whatever you decide to do, just do it! Don't second-guess yourself. You have to be confident and comfortable with your decision.
Many HUGS!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
0 -
surprisedat65...oh my what a confusing mess. The more I think I understand the less I do. In some cases rads are not required after a mx and in some they are. I thought if nodes were clear...then no chemo. But looks like you had clear nodes and they are still talking chemo. And why a PET if the plan is to do chemo anyway??? Sorry you are having to deal with this mess. Hope it all gets sorted out.
(((hugs)))
0 -
Surprise-I didn't have Ki-67, but did have the Oncotype, which gave me a 5. My MO explained if tumor was greater than 2cm, oncotype was in the intermediate (I think 15), or grade was high then chemo was necessary. My tumor was on the left and I elected to have LX with RT. I have not noticed any side effects, thus far, but like Peggy said those may come later. I am 2 weeks out of RT and taking tamoxifen. It seems to be when one treatment ends another begins. Hoping your oncotype comes back low
0 -
I just got my path report...just DCIS, very small with good margins 👍👍👍
0 -
Funny! FANTASTIC NEWS!!! Make sure to post that on your profile (publicly, of course) so we can all rejoice with you!!
0 -
Hi kayfry
Just got path report. Just DCIS very small good margins. You definitely said it exactly how I'm feeling. Very grateful indeed. I'm a big fan of annual mammograms. Especially now. Being that I'm adopted my oldest daughter is going to get her first Mammo. She is 37. Just to make sure.
0 -
Hello to all,
So here's my story: right side lumpectomy 9/29/14 followed by 33 rads, now Anastrozole for 5 years. Had a left side mammog and ultra sound Sept. 2014 like a few days before the lumpectomy. Now I am going to have the 6 month recheck mammog and ultrasound on the left which they said was Birad 3. I am terrified !!! Am I now at high risk since I already have a breast cancer history? Tried to move the appointment up several times but no go. So I wait and see what happens on March 20 which is the appointment. Got real high anxiety over this...cannot go thru all this again. Anyone out there have the same or similar situation?
Hugs to all !0 -
BeachLady, take a deep breath and relax (if possible). The oncs are being proactive and monitoring that left breast. Accord to what I just read on this site, they don't think it is anything bad but want to watch it which is what they are doing. Do try not to worry - I know that's awfully hard. I have my first post-everything mammo in April. I already know I have micro-calcifications in my right breast so those need to be watched.
You're doing everything you can. Try to think positive!
HUGS!!!!!!!
0 -
Just found this forum. Had lumpectomy 1 year ago on left breast. Now had lumpectomy on right breast.
Currently most concerned about condition of left breast after radiation, too swollen still.
0 -
Hi everyone. I have a question that I know you wonderful ladies can answer or help me with. A couple of weeks ago I had a core biopsy on a 3mm - results were benign. I'm scheduled this week for an excisional biopsy to remove a sclerosing (sorry if misspelled) papillary lesion and a sclerosing something else that begins with an a. sorry-don't have paperwork with me and in the 11th hour, i'm wondering how this lesion came about during the core needle biopsy-how was it discovered if the core needle only removes the 3mm solid? My BS says my status could change but may not. Disclaimer I guess. I wasn't freaking out, but I can't figure out how we got from one to the other. I hope I'm making sense. Just trying to connect the dots.Danny
0 -
Hi Jeanelle -
Your course sounds about the same as mine. Also, I had a rash that itched.- which started around the third week. I also had the skin changes and got red as well. My skin didn't blister and crack luckily. Towards the end, my skin had spots that looked like nutmeg from the temporary damage to the hair follicles. The fatigue started with me around the third week also.
Now I am about almost three months out from radiation too. My energy levels also vary from about normal to very low energy days much like the past three. On those days, I just try to accept it and not fight it.
MarieBernice6234
0 -
Hi ladies.. I had a lumpectomy 3 1/2 years ago.. In the last 3 months I have developed a lot of tenderness along the scar line and I feel lumps and bumps. I am told this is scar tissue. Does anyone have lumpectomy scar tissue discomfort.? I see my Oncologist next week. My mammo in November was ok. but this is concerning..
0 -
EileenOhio, I had a cyst removed from my left breast 47 years ago. Then last spring that area started hurting. Not bad but annoying. I thought my little dog had hit me with one of her paws and bruised the scar tissue there or something. When it didn't go away after a month, I went in. As you can see they found BC. But NOT where I was hurting. My "hurt" was at 3 o'clock and the BC was at 6 o'clock. Go figure. Not sure if the "hurt" has gone away or not. I think so. So, yes, I think you can have scar tissue discomfort as far as I'm concerned. Of course you're worried. Hopefully your oncologist can reassure you.
Greenfields, do you suppose you have fluid that's collected in your left breast? I don't recall that swelling is an SE of radiation. But even if it is, it should have been gone long ago. You might want to check with your BS, MO or RO and find out what's going on.
HUGS to both of you!
0 -
Hi all, I was wondering how long after lx's were you able to lift without pain. They told me not to lift anything weighing more than a gallon of milk for a couple of weeks, but I find that lifting half that weight causes pain. The daily pain fluctuates from sharp twinges to dull aches and is very manageable but always lingering. My swelling doesn't seem to be going down at all, and at times I notice areas where the swelling has increased. I have been icing a lot so I do get temporary relief. It has been two weeks since my last surgery and am wondering when I should start trying to increase the amount of weight. I don't know if I am expecting too much since the surgeries were so close together, and I don't want to cause any problems by rushing my recovery. However, it seems that a lot of people had no pain several days after surgery and am wondering if what I am experiencing is normal. Thanks.
0 -
Greenfields, I am 6 months out from my lx and I still have swelling. They are trying to decide if it is still from the radiation or not (I'm 3 months out from the end of radiation). I did have swelling during radiation and it appeared to go down and then flare back up again. I also have a seroma where they removed the tumor which also wasn't noticed until after radiation was done. It has been drained once and I have a feeling they may drain it again when I go see the surgeon tomorrow since I am hurting again. BC definitely seems to be the disease that keeps on giving.
0 -
Rekidal, if you had nodes removed, make sure you do the stretching exercises you were given (I suspect they help even if you didn't have nodes removed since everything seems to be so intertwined). I was told not to lift for 3 weeks. That was hard since I was caring for DH at the time and the sons had gone home before the 3 weeks was up. And yes, probably 3 surgeries so close together makes everything worse. You've been through so much, just don't push it. Your body has been really shocked with all this. HUGS!
Jeanelle, I think I also have a bit of swelling after 9 months from my lx. I'll have my BS check next month when I see her. When you have no boobs you notice if your bra is suddenly quite filled
Hopefully draining it again will take care of your swelling and discomfort. HUGS!0 -
Rekidal....I would imagine it's going to take a bit longer for you to regain normalcy with 3 back to back surgeries. I only had one and am over 5 months out and still have annoying twinges and some discomfort if I overuse my arm. The area is still tight and yoga helps stretch the area out. It's difficult for me to know what is from the surgery because I was already having some nerve issue in that arm. However, I do have some numbing on my back that is new since the surgery. It comes and goes too. Eveything seems to be better if I exercise regularly. I do yoga a couple times a week and walk on a treadmill twice a week. I still try to avoid lifting anything too heavy....like 40 lb cat litter!
0 -
Peggy, I was very fortunate and didn't have any nodes removed. They never mentioned any stretching exercises, but I will go online to see if I can find some that will help. Thanks that might do the trick and I will limit heavy lifting for another week.I just got off the phone with radiology and I'm now scheduled me to meet with an RO next week, so when she does examine she can let me know if it is healing properly and when she expects my treatments to begin. Then comes an extremely difficult hurdle which is to quit smoking. Even after getting the diagnosis in December, I have continued to smoke knowing that I need to stop. But, I told myself that I will absolutely quit prior to treatments and that is my goal. I had quit for several years when I found out I was pregnant with my oldest child and several times over the years after my sons birth. I started smoking again the day my mother died 11 1/2 years ago. My youngest was just 6 months old, and my Mom's death was so unexpected and devastating. Of course, I know that really is no excuse but one that I have clung to over the years. I keep telling myself that I was able quit to give my children the best start in life, and now I need to do it for me and this new chapter of my life. Sounds corny, but I hope it works. I welcome advice from others who quit after being diagnosed as I know it must have been extremely difficult. Thank you.
0 -
Rekidal, I do understand about quitting smoking. I quit 16 years ago. Unlike most everyone I know who quit, I carried around cigarettes with me for 6 months. I went cold turkey and did it one day at a time. I quit because it got too expensive. Health reasons didn't seem to help. It is very difficult. Concentrate on one thing at a time. Sometimes coping with too many changes at once makes it harder to accomplish anything. Of course you need to quit, but get things straightened out with the BC first. Then maybe it will be easier to quit smoking. That's my advice for whatever it's worth.
The type of exercises I was told to do are "walking" my hand/arm up the wall gently, to stretch out those muscles and the tissues. Keep doing it until you can raise your arm straight up. You'll probably need to be able to do that for your Rx anyway so worth the effort. Just remember GENTLY.
HUGS!!!
0 -
Thanks for everyone's remarks.
Peggy—I did take my friend, who is a retired RN, with me to see the MO, and I had all my questions written down. I think the MO was saying that the fact that there was first 1 tumor and then a 2nd popping up was what made her feel that chemo was necessary, but she certainly wanted to run the Oncotype first before she made the decision. When I questioned her about the Ki-67 score she said that, too, was a reason to rule on the side of caution. But when I mentioned that to the RO he pooh-poohed it as nothing he considers, and, indeed I have read that not all labs even bother with it. On Dr. Susan Love's website it says, "Higher-grade tumors typically have a higher Ki-67 score. However, there is no conclusive evidence that Ki-67 is associated with survival. Some studies have found that it is; others have found that it is not."
Perhaps it is time to give Love's book a read. Thanks for the suggestion.
Nash54—It never even occurred to me to ask what the purpose of the PET scan was as this time. Perhaps the MO is looking to see if there's additional tumor activity in the breast since I had first 1, then a 2nd tumor.
Annie88—I guess if I'm able to have it, the Oncotype will be the ultimate deciding factor. Without it, it will be a difficult decision to make.
0 -
re: DR.SUSAN LOVE'S BREAST BOOK
Its most recent issue on Amazon is 5th edition, copyright 2010. Apparently a 6th edition is coming out in September, but no point in waiting that long. I just feel that if it's 5 years old its unlikely to have the most recent information. Any opinions?
0 -
Hi Peggy, Your advice is the same that my sister received years ago when she was diagnosed. Her doctor told her not to stress out about quitting immediately and that she should wait until she recovered from her mx and subsequent surgeries. I think it is great advice! I told my husband and kids that I would quit once I was done with everything. Needless to say, my husband has been giving me a hard time about smoking just about everyday since the dx. And it is getting worse. Of course, he has never smoked and doesn't get it. He told me this weekend that if he sees any lying around he will shred and trash them. I now keep an extra pack in the glove box of my car just in case. Along with him freaking out over the smoking, he is constantly stressing me about out about our insurance and what they will or will not pay. I have spent more time on the damn phone with the insurance company and the different hospitals/doctors to find out what is covered and what's not. Is the hospital in network? The doctor? The testing? Can I go somewhere else for the testing and have them send you results? How do you bill? ? ? ? ? ? It goes on and on and on. I have been so stressed that one of my sisters is ready to kill my husband. BTW she has been very helpful. So if you hear about a man murdered in Mass by his SIL, you'll know why. Lol. Hmm, now that I think about it, he is one of the reasons my smoking has increased since the dx. I can't wait until this is over, treatments and bills both. I am going to take a short trip to relax, and no, hubby will not be going.
0 -
Surprised, I think that the book would be very helpful even if it is old. At least I found it so last summer. Some things never change. Of course treatment strategies may but I think it is worth the investment. I'll probably buy the new version when it comes out, too. Her explanations of breast cancer and the treatments that are the same are excellent. But that's my opinion.
0 -
Rekidal, when my DIL was going thru colon cancer treatment, my son spent all his time fighting the insurance companies, idiots at the oncologist's office, etc. He still fights them for everything. He was ready to commit mass mayhem quite a number of times. I totally get it. If you can, sit DH down and tell him that he is causing you more stress than the BC and he needs to lighten up. He needs to be supportive. Let HIM deal with the insurance crap. That'll keep him far too busy to bug you about anything! Good luck!! HUGS!!!
0 -
surprised, I'm sorry to say it, but it does sound as if your medical team has really been lacking in the communication department. What an emotional roller coaster you've been sent on! I'm somewhat shocked, for example, that no one mentioned you would likely not need radiation if you went with lx. I really hope you can get the Ocotype test—don't take no for an answer!—and that the results are good news.
0 -
Funny, that's fabulous news. So happy for you!
0
