Lumpectomy Lounge....let's talk!
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LovesToFly, thank you so much for the great advice. I've been meaning to try yoga and I know excercise is great therapy. I will also try to sing more, I can see that helping. I agree with you about the Ativan. It's pretty much the only thing that turns off my negative thoughts. I try not to take it too often though. Although it is good to have on hand. Maybe it's being back to work that has prompted these feelings. It's funny but I used to be known at work for being a great Pastry Chef and now I feel like people look at me differently (as the young lady who has cancer). Although everybody is super supportive I guess like all of us I just miss life before this diagnosis. Sorry if I sound doom and gloom today, I Really am a positive person😊
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TwinTwin2, don't apologize for feeling down in the dumps. We totally understand. That's what so nice about this site. This is a safe place to complain, cry, scream, rant, laugh and bubble over with joy. And we've each done every single one. We'll envelop you with comfort until you feel ready to find your positive self again. As you know by now, we can't go back to pre-BC but eventually we do find a new normal that we can live with and BC recedes into the background. It does take awhile. You are very normal (sometimes that's very reassuring).
HUGS!
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I took Claritin to prevent bone pain in the 3-4 days after my Zometa infusion--and bone pain was just about the only short-term side effect I didn’t get. I took the normal 1-a-day dose at bedtime instead of my usual Zyrtec (which is broader-spectrum). As a result, my allergies--sinuses, throat, eyes--have been brutal this past week. So I’ll switch back to Zyrtec tonight.
Had my pre-op H&P, bloodwork, EKG and MRSA swab today. Pleasant surprise is that the Lasix-induced weight loss seems to have held (despite having taken Lasix only for three days). Another pleasant surprise was that my glucose was only 93, and that I am not anemic (my hemoglobin is fine for a woman; my hematocrit is at the low-end of normal, below the blood-donor cutoff--but I can’t donate blood for at least another 10 or even 15 years, since the blood bank insists I’d have finished active breast cancer treatment, including AIs, at least 5 years prior to donating). No word yet on the MRSA swab yet, nor lipid panel (but I’m not sure they drew one of the latter, since neither my eye nor hand surgeon requested one). I was definitely a challenge for the nurse, as she looked at all my bruises from my failed IV attempts at the cancer center last week; so she decided to tap a vein on the back of my hand...the cannulas were thin, so the tubes were slow to fill. Second time today I had to use my mindfulness breathing to distract from pain & anxiety--first was when my pedicurist was digging in to get at my stubborn ingrown toenails. (My podiatrist says she does a great job). My cataract surgery is a week from tomorrow--Bob says my veins should have healed by then and that the anesthesiologists in the surgi-center are quite good. Hope they recover in time for the thumb surgery on the 20th. (My hand surgeon gave me the option of getting only the nerve block--he says most of his patients opt for the sedation but some do have to drive home or to work. Driving won’t be the issue, so I’ll call and ask if I can just take a couple of Xanax when I check in.
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Sandy, how nice that your Lasix agony was worth it! Good news on the blood sugar levels! I'm glad you're going to get everything taken care of, especially the thumb. Seeing is good, too. I think I'd want to be in lala land for surgery.
HUGS!
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PontiacPegg, thank you so much for your words of encouragement. I needed that day so much today. The reason I had second surgery was to get clean margins (3mm dcis on edge). I see my med oncologist in a week. I dont know if she will have my oncotype score then or if I will have to request it. I also have appointment with rad oncologist 5 days later. I haven't met my oncs yet, just my surgeon. Causing me some anxiety so thanks for listening. Lots of hugs to you and all the ladies experiencing the same feelings. Thanks again. Xo
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twintwin2 - I was so anxious, too, when I had incomplete information (worries) and no plan. I'm guessing this is where you are. First, a couple questions: 1) What is your Er+ percent? 2) What is your Pr+ %? What you have going for you is that your tumor is small, there's no node involvement, it's Her-, and you have an Er+/Pr+ tumor that responds well to the prevention meds. So, it sounds like they got everything, you'll do radiation, and then you'll take rhe meds to prevent recurrence (some people think of it like taking birth control as a form of prevention). Twin, cancer is no longer a death sentence, and your stats are very, very good. I'm a year out, and I've gone from thinking about cancer every waking moment to almost never now. You have good stats. Breathe. Radiation and meds are probably your plan. If you have to have chemo, it's only prevention (because your nodes are clean!) You got this, girl.
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twin twin. I feel like I was in your shoes not that long ago!! I won't lie, it's stressful as heck! But it's better once you know all your info and have a treatment plan in place. I'm just now getting to where I can deal with the stress better, but I'm taking antidepressant for the first time in my life. Hugs to you and YOU CAN DO THIS!!!!!
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Twin, I'm glad you're feeling a bit better. Hopefully you'll have your results when you see the surgeon.
HUGS!
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Twin, I know completely how hard the waiting is. They goofed with my test and it was delayed about 2 weeks and I was crazy, then had to wait 10 days for a different test. The waiting is totally the hardest. While I waited, I was able to take a photography class and a jewelry class. Plus met friends for lunch, went to the movies, and just kept busy.
I also have the Neulasta pod on right now. They put it on y stomach as they said it's not as easy to know it off. It's attached and set before you leave the chemo treatment. Then 27 hrs later you hear a beep and it starts slowly injecting the medication. 45 minutes later, you take the pod off. The first time I went in for the injection, but this time really didn't want the drive (in 1 hr.)
KD, tried the allegra this morning. Will let you know if there's a difference. I'll take it for 7 days. Also rinsing mouth already about 5 times a day to try to avoid mouth issues this time.
Hope all are hanging in today.
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Thank you ladies for all of your support! I'm feeling so much better than I did a few hours ago thanks to you. Lovinggrouches good for you for taking antidepressants during a time like this. I too take Ativan and would take it everyday if my doctor would prescribe me enough. We deserve to feel some sense of comfort during this ordeal and sometimes that means resorting to medication. It is also great to try and stay busy and distract our minds that way too. Thanks again. Hugs hugs hugs to all.
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KD, I never took any NSAIDS for the pain, mostly just Tylenol.
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I had been advised by the oncology nurse to take Aleve to help with the Zometa muscle aches & fever--but when I reminded her I have GERD, she said it was okay to take my pair of arthritis Tylenols but only every 12 hrs., not the 8 hrs. specified on the label. Each caplet is 650 mg., time-release, so two 2-cap doses are 2600 mg. And the new guidelines for acetaminophen have lowered the daily limit from 4000 mg. to 3000.
Forgot to mention that my PCP wasn't mad at me for taking the Zometa infusion, but said there is new research in the NEJM that finds bisphosphonates--oral or IV--strengthen vertebrae, lowering the risk of spinal fractures. But spinal fractures don't usually happen in women <80, even those with osteopenia or early osteoporosis. Bisphosphonates, it turns out, also don't strengthen long bones (e.g., the femur, the “neck" of which is the most common site of “hip" fractures) any more than does weight-bearing exercise against gravity. (He says it doesn't have to be ballistic--walking on solid surfaces, upright biking, ellipticals, are fine--but water exercise, while great for aerobic capacity, joints, & flexibility, does nothing for bones). I asked about Prolia, and he says that it has been shown to prevent bone mets and slow their progress if already existing; when we get close to the 6-month mark, he's willing to try for a prior authorization from Humana. He says he's had better luck with prior auths than have many MOs. The downside, besides the hellacious price tag, is that since it’s a biologic it can increase the risk of immuno-compromise and myeloid cancers. But I think of my friend Maryjane, whose surprise 70th birthday party we’re attending this Sunday: last autumn, her osteoporosis was so bad that one slip-fall snapped her femoral neck clean through, and coupled with her COPD, her survival chances had been grim. She spent the last 10 months first in skilled nursing, then in assisted living, and is about to move into the accessible ranch house her husband bought for them closer to his hospital--and her two Jack Russells can hardly wait. I may take my chances and get the Prolia if it’s approved or we get lucky at lotto (or in Vegas).
But my PCP also told me a bombshell: that researchers have found that calcium supplementation, in women who are not taking AIs or chemo, really doesn't do anything, because the body maintains such homeostasis (balance) that the amount of elemental calcium in a standard 500 mg. dose of calcium carbonate absorbed by the stomach is measured in micrograms (about 100), not even milligrams. And that's in women with adequate stomach acid. 1000mg. of calcium carbonate in average women (or of calcium citrate) increases absorption to 125 mcg. But he also says that calcium supplementation (plus D3, Mg and K2) is indicated for women undergoing any adjuvant cancer treatment that weakens bones--and that includes AIs. I asked about strontium and he says there isn't any evidence that adding it to the above cocktail does anything. Any calcium not absorbed gets excreted, not in urine but in stool. So most women who are chomping on Tums, Citracal Pearls or Viactiv chews for “bone health" are basically just giving themselves pricy poop......pricy, hard poop. (No wonder Mg doesn't give me the Big D--it's the Caltrate I take with it).
And here's the second explosive stage of the bombshell (one that will not endear me to gastroenterologists): screening colonoscopies are now contraindicated for asymptomatic seniors >75, because the risk of bowel perforation is too high. In his opinion, he says Bob shouldn't allow himself to ever get another colonoscopy. I said, “But he has to get one every 3 years because he has polyps." My primary responded, “So what?" I replied his were sessile and adenomatous, and he said that GI docs call every adenoma a “pre-cancer," because all epithelial cancers began as adenomas.......but only .0001% of adenomas become malignant. I mentioned I was due for a followup in 2021, but not because of polyps or diverticuli (neither of which I had) but because of hemorrhoids. He said that was reasonable...but unless my hemorrhoids start bothering me or bleed steadily for more than a day there really isn't anything that needs to be done other than avoid constipation or straining.
By the way, this is the doctor who was Bob’s Chief Resident back in their UIC Hospital days. He diagnosed my transient mitral valve prolapse by just instructing me to do a Valsalva maneuver and listening with his stethoscope--after the entire cardiology dept. (nuclear, echo, electrophys.) of Evanston Hospital had found diddly-squat after a full day of heart scans, echos and treadmill stress testing. And he also correctly diagnosed a case of NPH in a patient whom a colleague insisted had Parkinson's. Instead of L-dopa and deep-brain-stimulation surgery, the patient was treated with a simple shunt and fully recovered. So when he calls “bullshit," I go get a shovel.
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Twin - I had a similar diagnosis and stressed while waiting for the Oncotype as well. I agree with Loves to Fly...especially about the benefits of exercise and music (or a good movie). My mom had a great quote for me while I was waiting. "I've seen many tragedies in my life, most of which never materialized." It didn't end the anxiety, but did remind me that the most likely scenario was the one my doctor gave me. Be good to yourself, and TRY not to worry too much. We're here to listen when you need us...
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I'm still waiting for surgery and was told i would probably have radiation and hormone therapy.. a lot of people are having chemo too is it just normal procedure? I get stressed out too, i get on my computer and i draw graphic designs, making a coloring book, actually one is published, but updating a new one.. it takes care of the time..
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Fresh off of the surgery bed, 6 hours ago, and I am still feeling the effects of versed. I had bad anxiety during waiting period, so they dosed me with versed. If you are worried about the injection into your lymph nodes, it is a piece of cake. So, don't spend time worrying over that!! I had not had any versed before that time. If you are worried about the guide wire, another simple task, similar to stereotactic biopsy. If you are worried about the surgery, don't worry. The worst part is the waiting for the different procedures to get to surgery. I have a little pain, but mostly a raw throat and coughing up stuff from my lungs. I have some asthma, so being put under general usually causes some irritation. Hopefully, will not be in pain to any great degree tomorrow and can start picking up the pieces of my wrecked life of August. Worst month, worst year, worst fear of my life. No one should live in this kind of fear. I feel like a great weight has lifted from my shoulders and I have lost 3.5 pounds since diagnosed (which I am working on losing anyhow.) Diagnosed on 8/8/16 down 3.5 lbs. on 8/30/16.
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Chemo is not a given anymore for women with small ER+/PR+/HER2- node-negative grade 1 or 2 tumors. IHGJAnn, if your post-surgical path results confirm your biopsy report your tumor is very small, perhaps even tiny. Oncotype DX isn’t even ordered for tumors such as yours if they’re node-negative, grade 1 or 2, and smaller than 1 cm.--it’s assumed that the benefits of chemo would be outweighed by the risks because such tumors respond far better to anti-hormonal meds than they do to cytotoxic chemo, because they are slow-dividing and chemo works against fast-dividing tumor cells. (Hair follicles, nail beds, mouth and stomach lining, inner-ear cells are also fast-dividing, which is why they are “collateral damage” of chemo--so it logically follows that there’s no point in killing healthy fast-dividing cells if the cancerous slow-dividing cells escape destruction).
If you have an ER+/PR+/HER2- tumor, 1-3 positive lymph nodes and/or your tumor is between 1-2 cm., OncotypeDX is ordered to determine whether chemo would add any benefit to hormone therapy alone, and whether that benefit would outweigh chemo’s risks. If you score 17 or below, you are at “low risk” and chemo is almost never recommended any more. If you score 30 or above, you are at “high risk” and chemo is always recommended. If you score 18-25, you are in the low-to-middle area of “intermediate risk” and your medical oncologist would weigh additional factors (such as older age and any other medical conditions you have, aka “comorbidities,” that would make chemo more dangerous for you) to determine whether it is advisable to add or skip chemo. If you and your MO have further uncertainties, another test--MammaPrint or Prosigna (and sometimes BluePrint to determine subtype--Luminal A or
is then administered. MammaPrint and Prosigna have no “intermediate risk” classification, only low or high risk. This, and the time between surgery and path results, is the scariest time because it is so fraught with uncertainty. We’ve all been there, and have had different coping strategies. Some of us went into research mode (not on Google, but here and in “breast cancer Bible” books such as Dr. Susan Love’s and Dr. Elisa Port’s). Some engaged in retail and/or, um, culinary therapy (the former is okay if you can afford it, the latter, alas, can be dangerous if it leads to weight gain). Still others engaged in creative distraction--music, entertainment, exercise, and in your case, graphic art. (I do have some adult coloring books but haven’t used them--I am so left-brained, unusual for a writer and musician, that I want actual pictures to color, such as the old Venus Paradise pencil-by-number scenic coloring sets; I have no idea what colors I want to choose for abstract patterns and while they are calming for most people, they have the opposite effect on me. I did get one that has Van Gogh pictures, with thumbnails to guide color selection; and I bought a couple with scenes from favorite cities I’ve visited--though I am not visually-artistically-proficient enough to accurately depict contour, highlight and shadow without reference guidance).
Tell us more about the coloring book you published!
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IHGJAnn, mine was caught in early stages. It took two surgeries to get it all. The largest tumor was DCIS stage 0, and then a smaller one, 3mm, was IDC , but was considered barely stage 1 because so small. (Didn't get clean margins the first lx) After that it was determined what I needed to do to lessen the chance of recurrence. My plan was radiation & hormone blocker (tamoxifen ) for 10 years. I would not benefit from the chemo. I didn't have any trouble during radiation. Dealt with fatigue after, but is now getting better. And, so far, after 6 weeks on tamoxifen, no noticeable side effects.(Keeping my fingers crossed) Unfortunately, it takes time & lots of tests to determine your plan. Once you finally establish your plan it eases the anxiety some. Hang in there, it's all doable.
Michelle, glad you are doing good after surgery. I didn't have any troubles with surgeries either. But I applied ice often and did my stretching exercises. I understand the relief from actually doing something instead of all the waiting. Keep us posted on your progress.
Thinking of the rest of you who are in limbo waiting & those of you who are going through tx.
Hugs!
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Sloan15, sorry for the delay. To answer your question I am 100% estrogen and 90% progesterone positive. I know that will work in my favour for tamoxifen. Thanks for the words of encouragement. ChiSandy, you have some great ideas about how to stay active and distracted during the many waits. Great advice.
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I have one of my designs as my avatar.. The new book will be called Grace Designs.. It is God's grace that gave me the designs to draw.. I can't do them more then once.. I can copy, but if I lose them, they are gone. I was told when I was young i couldn't draw and would never be able to do anything, so i gave up art, after I graduated i started drawing and doodling on graph paper, i do all kinds of angles, but couldn't tell you what they are... I have a book published you can get on amazon, it's called New Season Coloring Book, but you have to look up my name.. Judith Holt to find it.
I get so involved you could drop a bomb and i wouldn't know it... great distraction for times like this
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Twintwin - Those are good numbers! People with high Er and PR % (plus Her - and node neg) usually have lower or med-low Oncotest DX scores. To keep your mind off worrying, make sure you force it to go a different direction if it wanders toward negativity. The quote "Control your mind or it will control you" is so true!
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Sloan.... Control your mind or it will control you... Great quote! I need to remember that one! Tattoo on my forehead?!?!
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Judy, that's great that you have a published coloring book! It does keep the mind occupied.
Michelle_in-Cornland, glad you're out of surgery and doing well. Ice everything. Take the appropriate pain meds before it gets bad (if needed). Feels good to get that behind you, doesn't it? Where are you located? We love to know that info - post it in your profile and make it public if you like. We are EVERYWHERE!
HUGS!
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Thank you so much everyone for your feed back, I went to my surgeon yesterday morning and I asked my surgeon about getting the full lymph nodes removed after only having one lymph node removed and why wasn't more taken out, she said only one lit up which means I only had one sentinel lymph node some people have 2 some have 3 and some have 6 but she stated that isn't the norm.......6 that is. And that having 6 would be more like getting into doing a full lymph removal then.
My lymph node measured 7mm which was a little bit bigger than the lump they took out and she said if the lymph node would have measured 2mm or less that she would have been thrilled and I wouldn't have to have all the lymph nodes taken out but due to the size being 7mm.......she said that all the lymph nodes need to come out.
My surgeon is out of IL. her name is Dr. Sonya Sharpless and I run into people all the time who are Survivors who say nothing but great things about her and that I am in good hands that her beside manor is wonderful and she also follows strict protocols as well. She went to school in Canada and with her views and outlook she's definitely not tainted by our Medical Industry. She follows all protocols and she does hundreds of Breasts Surgeries every year. She is also very familiar with the STUDY Z11 that was done in 2011 and she follows protocol when it comes to this.
I don't want this disease and who the HELL does but all I can do is FIGHT no matter what, even though I want to cry and let me tell you I have and I am angry and mad and just sad not all the time but a lot lately.
I deal with other health issues I have Rheumatoid Arthritis, Ulcerative Colitis and other Autoimmune Diseases. My surgeon said due to my Autoimmune Diseases that this is mostly how the Cancer came to be and it sure didn't help, she said I will have to watch over for life now due to all this. She also stated that I was the 3rd person she has seen in a week with RA and Cancer now and that when Autoimmune Disease are present that Cancer is a higher risk.
God bless you all and thank for listening,
Lots of Love and Laughs Always...........HUGS TOO!!0 -
Twin- so sorry about the anxiety- it can really get to be too much! Jill is right- activity, singing, dancing, talking about it- and, sometimes an Ativan to take the edge off. I didn't use it often but when needed it was really helpful. Hugs.
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Cinnamon, I had alnd but I didn't have to have a separate surgery. My snb was sent to the lab during my lumpectomy and when one came back with macrometastisis and one with micro they took levels 1/2 for a total of 9 nodes. Clarify what levels of axillary nodes she plans to take. There should be no reason to take level 3.
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Cinnamon, I have had psoriatic arthritis for 25 years and have worried about all the autoimmune drugs I've taken, especially over the last 10 years. I've avoided the biologic injections because of caner, but it didn't seem to matter. Funny thing, I've stopped all meds with my dx, but one SE of my chemo is that all psoriasis has cleared up since it also suppresses the immune system. My doctor says all the "big guns" for arthritis and psoriasis are now out for me from now on.
I've recovered so far from my allergic reaction. Trying to ward off any SEs this time with extra attention to mouth rinsing, fluids, and Allegra/Claritin. So far so good!
IHGAnne, I love your avatar and will take a look at your coloring book also. When I was diagnosed, a friend gave me a coloring book that is DEFINITELY an adult coloring book. Every page has a different F word expression on it. She thought it could come in handy on bad days!!! lol. Haven't had to use it yet, but the time may come :-)
Sandy has given such a great summary of the testing process and results. I was one who had an initial prognosis of no chemo, but Prosigna changed that. So far, everything is doable, even the chemo, though certainly not anything I'd choose. We all just do what we need to do and make our decisions, and then don't look back.
Sandy, you sure had the conversation with pre-op appt. didn't you? Re the blood work and chemo, y only problem now is that my calcium levels have been high since the day I started chemo. My numbers were normal, then pre-infusion bloodworm showed elevation and it's continued. Can't attribute it to anything so hope it's either the steroids or something and will be watched carefully. The steroids are sure elevated glucose. Monday night after infusion I was 358! Next morning down to 197 fasting. I guess it's always something.
How are you feeling Molly? Sloan, I love your quote also.
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Good for you, Dara. I had an Oncotype of 19 and high-risk Mammaprint. This is troubling as many women with low Oncotypes did not do chemo (before Mammaprint was gaining in popularity). I had the Mammaprint eighteen months after diagnosis.
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HappyHammer, thank you so much for the support. I have also read some fantastic quotes here that will certainly help me through my anxiety. Thanks for that!!! Does anybody know if oncotype testing is routine for t1a tumors (under 6mm)?
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Twin, oncotype testing is usually done on tumors 1cm-2cm. and as Sandy said, any positive nodes can figure in as well.
And all, please excuse all my typos. I think my keyboard is sticking and I need to clean the keys! :-|
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Thanks DaraB, I appreciate the reply. No worries about the typos
There's always so much Conflicting info out there that I thought I would ask what you guys think. I trust you more than dr Google!0
