Lumpectomy Lounge....let's talk!
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Beepositive, shooting pains are normal. The water feeling in the breast is normal too. That is body fluid. Our bodies don’t like voids and when we have the tumor removed it leaves a void that gets filled up with fluid. I could hear the fluid sloshing around in my breast. Very strange feeling. It took me almost six weeks for that breast to settle down then I had BMX.
I can’t speak to your incision problem. You are doing the right thing by contacting the PA. Don’t let the office close today without a call back.
Did your BS use glue to close your incision? Maybe you have an allergy to it.
Keep us posted
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Just came across this article: https://med.dartmouth-hitchcock.org/research/innovation-project.html. If you scroll down to Rick Barth's video on precision surgery you'll find a trial that uses 3-D imaging and 3-D printing to better target tumor borders, reducing reexcision rates for cells outside the ink. I'm not sure when the video was posted, or what stage the trial has reached, but it might be interesting for anyone who is still pre-surgery. He is certainly serious about borders--he was my surgeon and I wound up with 1 cm borders on every side.
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Oops! I see the website I provided does not work. Please try the Dartmouth-Hitchock website: www. DHMC.org,. Select, "For Health Care Professionals," then, "Research," then, "The Innovation Project." Yes, I know it's laborious, As I understand it, the new procedure replaces pre-surgical placement of one or two wires with under-anesthesia placement of several wires, precisely defining the actual, far more clearly identified, borders of the tumor.
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Help! I have been experiencing severe hives for a week and a half. I don’t knowwhat’s causing them. Any remedies out there that actually work?
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Benadryl?
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Avenno bath products? Calamine lotion? Both might relieve the itching but will not get to the root cause of the hives.
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ok I am struggling with thoughts that I am being undertreated. Since I was diagnosed I have never had a breast mri or anything other than a mammogram and one ultrasound after the questionable mammo. My friend had a benign lump removed under her arm ( fatty tissue or something ) and now they are recommending mammo’s and MRI every 6 months . She does have a family history but I’ve had actual invasive cancer and had a mammo 6 mos afternoon surgery and then they moved me to annual mammogram. I feel like they are very nonchalant about my diagnosis. Am I overreacting? I get that I should limit exposure to additional radiation but still wonder if I’m being followed closely enough????
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Gigibee, good question. It's so hard to know how much is because of different doctors, different insurance, etc.
I think the family history may have impact. That's what pushed my breast surgeon to let me get MRIs rotating with mammograms, though it remains to be seen whether my insurance will agree to pay for it.
I wonder whether your friend has dense breasts that make them trust the mammos less, and you have fatty breasts?
My BS made it sound like she felt like I'd be lower risk now that I was before all this treatment. Definitely on the cancer side, because of the radiation, and on the healthy side, I guess because of the tamoxifen.
I did have an MRI before my first surgery, to make sure there were no other areas of concern. Did you not have that either? I think in your shoes, I'd want to be pushing your doctors to explain their decisions, and also seeking a second opinion about screening going forward for you.
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I did not have an MRI before surgery. My surgeon who is the head of breast surgery at a highly regarded NCI teaching hospital said they do them like 20% of time now due to them finding out they resulted in many unnecessary and or more complicated surgeries. I am going to ask about It againat my next visit .
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Gigabee, typically, patients with small low grade cancers don't get scans as they can cause more false positives. Did you have the OncotypeDX? If so it is a pretty reliable indicator of the aggressiveness of your tumor.
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yes I did have Oncotype test, my result was 15.
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gigibee: I've wondered about the same thing. I never had a mri and my first mammogram recheck was one year out. They didn't do any genetic testing either. I was under 50 at my diagnosis too. My Oncotype score was 16.
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I never had a breast MRI because not only was my tumor nearly identical to Gigibee's but also because I have fatty breasts. Screening MRIs are recommended for dense breasts, and diagnostic MRIs only in certain circumstances. Breast MRIs are also expensive and quite uncomfortable, especially if you have a belly and can't lie prone. For the first two years I was on a semi-annual mammo schedule and then back to annual.
The only qualm I have about my treatment was after reading the SABCS report this month that found accelerated partial-breast radiation (APBR) slightly (statistically) inferior to the 6-wk whole-breast protocol in preventing ipsilateral recurrence of early bc. But then I read further into the article: the women in the study who got APBR had only 5 treatments over one week. Nobody in the study had the 16-treatment/3 wks+1 day protocol I had. The difference in recurrence was about 1-2%. And there was no difference in overall survival.
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Chisandy, I had the same accelerated schedule as you did, but mine was whole breast. I didn't realize they also did partial breast in 16 days. You probably got 42.5 gray in that time frame, so it isn't the same as the study group. I don't understand why they compared such different treatments. It would make more sense to compare accelerated whole breast w accelerated partial breast.
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I had an MRI, but I wonder if it was because the biopsy showed mixed ductal and lobular features? I do not have dense breasts. And having had endometrial cancer might have been a factor in the decision to schedule the MRI.
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I had my lumpectomy November 30th. This is all new to me but I feel my experience was probably fairly normal. I had my surgery in the afternoon and was home that evening. I did take a pain pill that night but after that I managed with lots of ice packs and Advil. I spent the next couple of days watching Netflix with ice packs on my chest and under my arm and a heating pad on my lap.
I've had all the usual swelling, pains, zingers, zips, zaps and lots of dancing going on in my breast and my underarm area where they took 2 lymph nodes. I know that's all part of the healing process but boy, you never know what's going to start acting up next and nothing is comfortable. I did have an incident the day after surgery with an uncooperative king sized duvet that I was carrying downstairs to lay on the couch. I popped a stitch and started bleeding thru my dressing. Yowza! Talk about pain! With pressure, more ice and a couple of butterfly bandages that I had on hand, I got the bleeding stopped. At my follow up apt, my surgeon could see where my incision had opened up but she said I did an excellent job of mending. LOL. My pathology came back good. Most of the DCIS was taken in the biopsy and the lumpectomy took care of the remaining DCIS and the tiny amount of invasive cells that were left. Margins were wide & clear. The 2 sentinel lymph nodes were both clear. All in all, I'm feeling fortunate. I had been feeling pretty run down prior to surgery and wrote that off to stress. It got worse though since the 30th so I've been blaming that on the surgery. My surgeon said it's not unusual and it would get better. Unfortunately, it's gotten even worse yet and now all of my joints & muscles ache. A lot. Yesterday, I had an apt with both my RO and my MO. MO asked to run some blood tests. Turns out I am EXTREMELY vitamin D deficient. I'm now on supplements and hoping I'll feel some relief before too long. To further complicate, my daughter was having some medical issues and was recently found to be BRCA positive. She just had a hysterectomy 2 weeks ago. She is across the country and I so wanted to be there for her. But because of my own issues, I wasn't able to be there. I'm really feeling like I let her down. She said if I tried to come right after my own surgery she'd feel even worse but it's a "Mom Thing". I really wanted to be there and I'm really worried about her well being. Because of her status, I had my own genetic testing done and results should be back in a few more days. My RO is all set for me to start rads and I've been focusing on that so I can get this all behind me. However, yesterday he advised me to wait for my BRCA test results. He feels if I'm BRCA positive, I should take a deep breath and a few extra days to review all my options before I begin radiation. That's excellent advice, I know. I'm trying not to think ahead too much but it's hard not to. Plus, now I'm back in that damned waiting game again. My positivity is running on empty. MO says I'll feel better once the vit D gets back up where it belongs. Right now I'm not believing it but will do my best to take it easy & see what happens. Sigh... My surgeon's assistance told me it's possible to feel fortunate while, at the same time, allowing myself space to feel whatever I'm feeling. She also said I should stop minimizing what's happened to me over the last several weeks. Emotionally and physically it has been quite a ride. My New Year's resolution is to take all the great advice I'm getting, remember it, and put it to good use. Here's to a better 2019 to us all!0 -
FastForward, remember, it is not just the physical things that are making you tired and down. There's a whole lot mental going on. It's a shock to find out you have breast cancer. Everything happens fast. Surgery does take its toll even though it is outpatient. You've added stress from your daughter's DX and surgery. Of course, you wanted to be there. Wisely, you stayed home. Bummer that she is BRCA positive and hoping you are not. Perhaps one of your doctors could recommend a mild anti-depressant to help out while things are so stressful. That could help immensely. Eventually things will improve and you just get used to the idea you BC. And honestly, just knowing what treatment path you are going to take will be helpful. Waiting for the genetic testing results is hard. Making a decision - whatever it winds up being - will lift a weight off your shoulders.
We're here to listen - to rants or whatever.
HUGS!
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FaceForward you are making a smart decision to wait on the genetics before moving forward with radiation. As PontiacPeggy said this is not only a physical effort, but a mental one as well. When I was diagnosed I waited on genetic testing because of family history and I knew it would impact my surgical decision. Unfortunately this journey we are on changes things on all levels and we will all be finding our new "normal". Hang in there, support your daughter, but make sure to take care of yourself first.
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Hi guys. Question...
I have been reporting to my regular doctor that I felt I was confused and fuzzy in the head. I questioned early onset dementia or Alzheimer’s. He’s just been monitoring.
Just read a warning I had not seen before on my Anastrozole. Don’t take and operate machinery! WTF?
So I did some research. Seems this drug and other estrogen reducing pills often lead to brain fog. Not the drug, just the absence of estrogen... which has a role in keeping us mentally sharp.
Well, I absolutely hate this fuzzy unfocused feeling. I am tempted to stop the treatment and roll the dice. I had stage 1, early and small, and a successful lumpectomy. Maybe just track myself with mammograms.
Tired of feeling like a nitwit. Thoughts
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I had a friend from this site who also suffered those symptoms. She changed to a different AI and it made a huge difference. Is that a possibility for you, RobinLT?
HUGS!
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If changing to another AI doesn't do the trick, maybe your onc can switch you to tamoxifen? After a couple of years, I'd had enough of the AI's and my onc put me on tamoxifen. Long term outcome, especially after some time on an AI, is about the same, and, remember, it wasn't that long ago that tamoxifen was the only option.
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I am going to look into it!
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I'm guessing that's an option. I see both my regular doc and my onc this month. In the meantime, I'm going to research it.
But from what I understand, any drugs that reduce estrogen can have that effect, since estrogen is important for mental health too.
I'll let y'all know what I learn/decide.
Thanks
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RobinLT- I too had brain fog, it was hard to come up with common words, hard to finish a sentence because the words I knew I couldn't verbalize. After a few months it got better, I hardly ever have that "blank" feeling anymore. So if you're less than 4-5 months into it, see if you can wait it out. If its been longer than 6 months and you still feel that way, a switch of AI may be worth trying.
Best wishes to you, and I'll toss in a Happy New Year - May 2019 be better than 2018!
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Hi CindyNY! Thanks for the thoughtful info. I am almost 2 years into this. I’m anxious to hear what my docs say. I feel as if my chances for a recurrence of BC and having Alzheimer’s/dementia are about equal. If I had to choose, I think I would choose breast cancer. I wish I had chosen to monitor my cancer instead of immediately having surgery, radiation and drugs. I might still just be monitoring a slow or stable tumor. Even waiting just 6 months.
I wouldn’t say that if I’d had aggressive or later stage cancer. But I do think I missed the gift of time and calmer thinking. Of course, I’m grateful to be here. It’s just a case if what-ifs.
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Hi CindyNY! Thanks for the thoughtful info. I am almost 2 years into this. I'm anxious to hear what my docs say. I feel as if my chances for a recurrence of BC and having Alzheimer's/dementia are about equal. If I had to choose, I think I would choose breast cancer. I wish I had chosen to monitor my cancer instead of immediately having surgery, radiation and drugs. I might still just be monitoring a slow or stable tumor. Even waiting just 6 months.
I wouldn't say that if I'd had aggressive or later stage cancer. But I do think I missed the gift of time and calmer thinking. Of course, I'm grateful to be here. It's just a case if what-ifs.
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Robin, don't second-guess: despite being Stage IA, Grade 1, you still had invasive cancer and unlike with pure DCIS, "watchful waiting" can be like playing Russian roulette. Sadly, there are a few here with ER+ DCIS who opted not to do endocrine therapy, and eventually got mets (the DCIS can mutate into IDC but there's no way to tell which ones will do that).
Tamoxifen doesn't reduce estrogen: it clogs the estrogen receptors to block the tumor cells' access to estrogen. Its risks for older women can be blood clots and uterine hyperplasia. Try a different AI first, or even a different generic supplier of the same one.
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Thanks, ChiSandy
I was hoping you would chime in. It makes sense to try another. So... clogging the estrogen receptors.... does that mean you still get the benefits of estrogen? I have not looked into Tamoxifen to see if it can cause mental clarity issues too
I have friends my age who’ve been on Tamoxifen for years. It used to be the only option, right? Curious how they decide which one to give you... Tamoxifen or Anastrozole.
I need to figure out how to not lose my mind (literally) due to these meds.
I’ll be sure to ask about my options when I see my oncologist. Thanks for your input. Any specific questions you think I should ask, please let me know.
Thanks
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RobinLT, I'm post-menopausal and my MO prescribed Tamoxifen, which I will start tomorrow (unless I procrastinated again!). The MO wouldn't start me on an AI without doing Prolia since I have osteoporosis, and I had several reasons why I couldn't/wouldn't do Prolia, at least not now. She said I could go the Tamoxifen route, at least for now, and although I will need to address the osteoporosis, this way it won't be urgent and will give me time to resolve some issues, or find out if they can be resolved. I had a thorough hysterectomy in 2008, so no fears of uterine problems, and since I've been taking a daily low-dose aspirin for several years and don't have heart problems, I'm not particularly high-risk for clotting problems. My PCP just put me on a statin for cholesterol, which should also help, if I understood correctly. Now to see if I get brain fog or other problems. It's all pretty terrifying. If my brain fries or my joints hurt worse than they already do, it may be a short experiment.
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