Lumpectomy Lounge....let's talk!
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I'm now 4 months post radiation and doing well except for the return of some cording. Last week I noticed a red mark on the lower outside part of my breast, nowhere near the area of either tumor. It's now been five days and it hasn't changed. Feels like a lump. Freaking. Me . Out. I'm on tamoxifen and ibrance (Pallas study). Can someone please tell me it's nothing?
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ArtyMom: Your doctor should probably be the one to consult about the lump. Did you have PT at any tme post radiation? My RO mentioned today that if I have any tightness or pain on reaching, that she would order some. She says I shouldn't have anything that reminds me of radiation once it's over and healed.
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ArtyMom - Would suggest you contact/visit a Doc as soon as possible for a professional opinion. Hope you can reach out to one of the Docs on your "cancer team". So many odd things seem to happen to our bodies during treatment!
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How’d you get into the Pallas trial being Stage IA? Their site mentions it’s for Stage II & III.
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Hi I have been reading this thread and posted a while ago. I had my lumpectomy last week. Everything went well but my surgeon called this evening with some results. First they removed 3 nodes and 1 came back positive. Surgeon said there was 9mm of cancer in it. Second I had 2 tumors and they did not get clean margins on either. I am panicking tonight...can someone help me thru this and help me understand this better.
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First of all, take a deep breath and DON’T PANIC! You had only one positive node. (And nodes are pretty small—did your surgeon say .9mm? It is pretty common to not get clean margins on the first try. (Heck, they couldn’t even get clean margins from a mole on my back). Your tumor grade is medium—so it’s not aggressive. Your tumors totaled less than 2cm (at least from what your profile says). And your tumor is hormone-positive and HER2-negative. That makes you eligible for anti-hormonal therapy after everything else is done. And because you had fewer than 3 positive nodes, it also makes your tumor eligible for OncotypeDX testing to assess the risk of recurrence—which is a major determinant of whether or not you would be recommended to have chemo.
And even if you do need chemo, that means your doctors believe the tumor would be vulnerable to it, making it yet another weapon in the arsenal to put you on the road to "cancer-free."
We’re in your pocket, and don’t worry—you can do this. You’re not alone.
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thank you Sandy, yes one tumor was 1.7cm that was the lump I found, an mri showed a spiculated mass that was cancerous behind original tumor think it was 7mm in length. My surgeon had told me that there was enough space between the 2 that considered it the same cancer in 2 spots and close enough together and small enough to still do lumpectomy. Not sure on the size of lymph node,I heard 9mm, I know my surgery notes said they removed 3 nodes, 2 were 1 cm and 1 was 2 cm in size.
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Those measurements (1cm and 2 cm) were of the nodes themselves, not necessarily the tumor cells in one of them. Did the report say whether the 9mm tumor was in the 2cm node or one of the 1cm ones? 1cm is about the size of a pinky fingernail. The size of a node is irrelevant if it was negative.
Because each separate breast tumor was <2 cm, even though they were removed simultaneously in one “chunk," they were not contiguous and therefore for staging purposes they wouldn’t be added together…the largest tumor is the one that determines staging, so you are probably Stage IB if the cancer in the one positive node was .9mm, or Stage IIA if the cancer in that node was 9mm.
(BarredOwl, please weigh in here if I’m misreading the 2010 AJCC (UCSF) staging criteria).
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Thank you again Sandy! I don't have the path report from surgery. My surgeon called and gave me the info over phone this evening. I see him tomorrow morning for my post op appt. So many questions for him tomorrow. He said I would be scheduled for surgery again next week asap. Do you think they will take more nodes in surgery next week?
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ArtyMom - sorry we now have to wonder about every little thing. Check with your dr. Praying it is absolutely nothing and peace of mind very soon for you
Runnermum - sorry you have to spend the day and night with so many questions. I know your appt can't come soon enough. Prayers that all your questions can be answered. Write them down .... I always forget something
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Runnermum, re-excision surgery to get clean margins is about the margins, and doesn’t usually require a second node dissection. That first SNB, which found only one of three sentinels to be positive, should be enough. Rather than panicking that you had one positive node, it’s better to be thankful that the lymph system did its job of catching runaway cells before they could get any further. Had all three nodes been positive, they might want to dissect one level deeper. But you won’t need that.
You might want to ask the surgeon about whether there was any clear tissue at all around the margins. UCLA contends that the new standard for “clear” should be “no tumor on ink.” So if there’s even a mm or two clear circumference between the ink & tumor cells that might be sufficient to avoid re-excision. If not, it’s highly likely they might not have to dig much further.
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hi, I have been seeing where Clariton is used for bone pain? Does it help from bone pain caused from Ai's or Tamoxifen?
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yep you are right ChiSandy...I should not have panicked the way I did last night. I was also able to speak go a knowledgeable friend over phone night too. She said the exact same thing you did...my nodes were doing their job. The last 6 wks have been filled with so much stress and anxiety I don't even know who I am anymore. Everything we have done or they have told me turns out to result in more waiting or different then what they first told me. I know it's part of putting all the pieces together, to get me the possible treatment and outcome, but honestly I don't feel like we are any further along in my treatment then I was 6.5 wks ago when diagnosed. it's pretty much been if something can go wrong, it has. I have my summers off. I had prayed I would breeze thru treatment this summer and be right back to work end of Aug. At this point I am not still not not sure what my treatment will be, when I will start it or if I can even go back to work this fall. I'ts all causing all causing extra stress and anxiety on top of the diagnosis. Thank you so much for the questions to be asked, please let me know if you think of anything else.
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Runnermum: I can understand how stressful this has been for you to have had to wait that long for surgery and now have to wait again until a plan for treatment is set. Once they get that all in place, you should be feeling better and know what to expect. I had a re-excision and no other nodes were taken, although my sentinel node was negative in the first surgery. My margins weren't clear but "close" on the re-excision, but the surgeon didn't recommend a third surgery and was confident that the radiation would take care of anything left behind. I sure hope he was right! Second to last treatment today!
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Nancy618 - yay for you being at the finish line for radiation! Just met with my RO. Any helpful tips would be greatly appreciated! Are you on any of the radiation threads?
Runnermum- one thing I have learned thru this process is that they don't seem to get in any hurry. That can be frustrating I know. Once you have your plan you will feel some better .... this in between was the hardest part for me.
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NDGrrl, Yes, regular (not "D") Claritin (or generic) can help with joint pain from AI's. It may not eliminate it but I think it does help. My problem is mostly morning stiffness and THAT it works wonders on. I have had this stiffness for years, so not AI-related. Give it a whirl. If it doesn't work, at least you tried. My PCP said I can take Claritin with Benadryl which is wonderful since Claritin is useless for my allergies but Benadryl works wonders
HUGS!
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So here is what I found out today at appt with BS...positive in 1 sentinel node. Will not need to take any more nodes. Will have re-excission this Friday. One of my tumors was larger then what showed on MRI and one was quite a bit smaller then originally showed on MRI. Unfortunately larger size was 2.3cm so changed my stage to 2B. It's quite overwhelming today. Good news was my BRAC testing came back negative.
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ML1209: One more to go!!! I am on the radiation thread for starting in May of 2017
Runnermum, I think the best advice I can give you is "one day at a time" and also DON'T go googling stuff. :-) This is a good place to get support from others who are going or have gone through what you are going through. Congrats on the negative BRAC!
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runnermum, with ILC and two tumors I would go back and get a mastectomy. I would not mess around with a "sneaky" cancer like ILC. Imaging does not always pick it up.
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Molly50: I think runnermom should follow the recommendations of her doctors and seek another medical opinion if she feels it is necessary. I really don't think it's helpful to create more stress for those who are recently diagnosed by giving opinions on what WE think someone else should do.
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Runner, Please try not to get too caught up in your stage (see mine), and just focus on what you must do for right now. This can be/is overwhelming, but just listen to your medical team and get the best advice you can. This morning, day 5 after my first chemo, I said aloud, "Lord, I don't know if I can do this." I am feeling so much better even this afternoon -- not riding horses today - HA - but they prepared me that days 4 and 5 could be my worst, and so far they were. For a nano second this morning, I wondered if I had made a horrible mistake by doing chemo at all. Look at my nodes, though. I essentially had to do so. Yeah on the BRAC testing negative. Hugs and peace.
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Throughout this treatment I found waiting was always the worse. A close 2nd was trusting the team of strangers to lead you down the correct path. I had wished I had found this site earlier. To all those starting out and in the midst of treatments I wish you well. Take a few moments each day. Just for you. I found a hot bubble bath with candles and soothing music was my sanctuary. My sis dxed 2 months after me liked to walk to relax. The future and not knowing is scary. None of us want to be here, but I am glad for the support.
Ty, Peggy I will give Clariton a try..😀.. Hugs bac
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Claritin (save some $ and get generic loratidine) helps all kinds of bone pain, whatever the cause but not joint or muscle pain. Careful with Benadryl—it is heavily sedating, and my shrink actually prefers that I take Xanax (generic alprazolam) for sleep rather than Benadryl or docusate sodium, because Xanax has a much shorter half-life and thus no “hangover” in the morning.
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I don't take Benadryl for sleep. Just allergies. 25mg capsule 1-4 times a day. It doesn't make me sleepy. I've been using old-fashioned antihistamines since I was 3. The one I used until I was 45 was discontinued
I gather the dosage used in conjunction with chemo is much greater.HUGS!
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Is Xanax an OTC med? Is it an allergy med too? I do have problems sleeping. I was put back on Tamoxifen about 3 weeks ago after trying two diff AI'. Sleep .has been lacking and the dreams are crazy. When I do sleep I wake at around 4 am. My bodies temp is also going crazy. Hot cold hot cold. Toss and turn. Last time I was on Tamoxifen I was also on Effexor. I do not want to go back down that route.
I am nearly 4 yrs out from my lumpectomy and 2.5 yrs out from fat grafting. I am still having pain in my lumpectomy site. I had an ultrasound and mammo in April. I have a cyst at the surg site. Anyone else several yrs out still having pain
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ndgrrl: Xanax is a medication for anxiety. I have problems sleeping, which is why I went off Femara onto Arimidex. I sleep about 4-5 hours and wake up and can't go back to sleep. OFF the Femara I have been sleeping 7-8 hours. I am hoping that Arimidex won't be the same. I was also told that I could take Effexor for hip pain and the sleep issues, but I'd rather not take another drug, especially like that one, to help with a drug I'm taking.
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Molly50 - I know ILC is sneaky, but I got a lumpectomy and will be getting an MRI every year from now on. I feel like that was the best option for me and a good way to make sure any ILC is found.
Runnermom: It is a tough decision what surgery to have. My surgeon and the radiologists went out of their way to get the lumpectomy option to work. I was fine with either choice. While I have had some second thoughts, ultimately I figured the team knew what they were doing.
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ArtyMom, sorry for your worries. I would check with my Dr for peace of mind. Hugs!
Runnermum, I agree, waiting is the worst. This journey puts us on a huge emotional rollercoaster. I started out with DCIS, after LX, pathology revealed small spot of IDC and margins weren't clean. All I heard was invasive when she explained the IDC, not the small, slow growing part. Freaked me out, I burst out in tears in front of DH and BS. Since she had to go back in for clean margins I had her check nodes for peace of mind. We are here for you. Sending positive thoughts and prayers.
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Runner - it is overwhelming and so much to process. I agree not to focus on the staging. Negative BRAC is very good. It really does get better once there is a plan.
Nancy618 - I had same issue with sleeping during Taxol treatments. Not looking forward to Tamoxifan So hard taking one drug to help with SE of another drug and then another to deal with SE from that drug. Hope you celebrate completing radiation!!
Kim- sorry you had a rough moment. It's allowed. Honestly I have been that way now that I am starting radiation. Some days I just want to feel like myself again and for my body to feel like my body again.
ndgrrl - claritin helped with neulasta, but it did not seem to help while I was on my Taxol treatment. Definitely worth a try. And as Sandy said ..... generic just as good.
Pontiac Peggy - interesting about the morning stiffness. I have had that for a while as well, but noticed during chemo it was gone. I assumed it was the chemo decreasing inflammation etc. Maybe it was the claritin. Allegra has always worked well for me as far as allergies so once I finished chemo I switched back. Morning stiffness is back. May have to switch back to claritin, but it does nada for my allergies. I am glad your mentioned this.
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Ml1209, it's nice to know I'm not the only that Claritin does nothing for their allergies. Thought I was alone in that. I was thrilled when my PCP said I could take it with Benadryl. One very happy camper. Maybe that's a combination that could work for you.
HUGS!
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