Lumpectomy Lounge....let's talk!
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My cataracts were first noticed by the optometrist back in my 50s. She said they weren't "ripe" yet, and if they weren't interfering with my vision or the ability to examine my retinas, to leave them alone till they bothered me. I asked when they would ripen, and she said maybe five or ten years, maybe never. Over the years, every two years when I'd get refracted, they'd still be noted as beginning to ripen but not yet. Two years ago I saw our ophthalmologist because I needed stronger reading correction (and couldn't use off-the-shelf readers because of my astigmatism). I was near his office and could take me right away. He noted they were getting riper. I asked him if it was time to remove them and he said (just like my orthopod when I asked if it was time for knee replacement) "You tell me."
Well, I knew last year it was finally time. First, I noticed that backlit things (like faces of people sitting in front of a sunny window, or the frets on my guitar neck when the stage faced the sun) looked like silhouettes and lost all detail. Second, when stronger and stronger readers (I began buying them despite the astigmatic distortion) couldn't help me read the fine print in acrostic clue numbers and on shampoo bottles. Went to LensCrafters, and the optometrist said my prescription had not changed, but my cataracts were so ripe she couldn't see my retinas well enough to examine them. She said that my difficulty reading was not due to difficulty focusing but to inability to see clearlythrough the clouded lenses. She said to see an ophthalmologist for a more thorough exam than an optometrist could do. That was my sign.
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I am doing well so far. I am home in my recliner with specific instructions to lift NOTHING. Anesthesiologist use bilateral pain blocker because I am very sensitive to pain meds especially morphine and dilaudid.
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Dear Lexicoe: I was dx with ILC and ITC as well, and I waited 7 weeks between my surgery and my radiation.
Dear everyone else: I have no answers/comments for you so I am wishing you well and good luck.
Dear Molly: I am not sure what procedure you just had but I hope that you feel better quickly. Thanks for the kind words.
Dear ChiSandy: You are a wealth of information, as always.
Dear Peggy: Good luck with your cataract surgery.
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Molly, Glad you're home! Hope you're comfortable and that your recovery is smooth and quick.
614, Thank you. Glad you are doing well.
HUGS!
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ChiSandy and PontiacPeggy - Thanks for the info about cataracts. Had both eyes done in May 2016, so good to hear that taking AIs could have minimal effect. My 3 sibs all had cataracts before 30 yrs old, so I dodged it 30 years longer than they did.
PontiacPeggy - Cataract surgery will probably seem like a breeze compared to the C. Are they doing one eye 1st & the 2nd one 2 weeks after? In addition to various drops you are required to use, make sure to ask about lubricating drops. I used Refresh Plus - they come in single use little vials and found these very useful. Good luck!
Molly - Best wishes for a speedy recovery.
Re: Waiting between surgery and radiation - It was 8 weeks between for me and glad I waited until "boob" had a little more healing time.
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CeliaC, I'm lucky. First eye is done April 11 and the 2nd the next week on the 18th! The optometrist in the practice had already put me on Refresh Optive - I'd never used eye drops before so that was an experience. The ophthalmologist wants me to continue on them, of course. Thanks for the good wishes. I'm really excited!
HUGS!
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Celia and 614--thanks for info on the radiation wait time.
It sounds like we have time to do the re-excision, if it's needed. I hate all the waiting for answers! I'm eager to just get the radiation going and done!
Peggy and ChiSandy--thanks, I'm passing all the info along to my mom.
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I have been hiding here in the shadows reading everyone's posts. I find the information very helpful, but I do have a couple of questions. What is cording? None of my doctors have mentioned it. About lymphedema: the radiation staff has told me not to lift anything heavier than 10-20 pounds and not to cut myself anywhere on my right arm. I had 5 nodes removed, but none were cancerous. Why the fuss? And for how long to I have to be careful? I am right handed and have to use the arm/hand for everything!
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VelvetPoppy, Welcome! Your immune system was compromised by the removal of those 5 lymph nodes. My MO said to be exceptionally careful of any cut - clean it well and use an antibiotic cream if you can. And if I feel a burning pain, rush to the hospital. That arm just can't get rid of bad bugs. As for the lifting, I was told to be careful of not lifting more than 15 lbs for a few weeks after surgery - not forever. But no blood draws or any injection or blood pressure reading in the "bad" arm. That arm/side is compromised forever.
HUGS!
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Thank you PontiacPeggy,
I know about the BP & blood draws. So, am I at risk for lymphedema for the rest of my life? The RO staff has made it sound that way.
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Dear Lexicoe: The waiting is the absolute worst. I sympathize with you. I do not know what your doctors will tell you but I am praying that all of your doctors will be in agreement. You will have time for re-excision before radiation, if it is warranted. Hopefully, you will not need to have a re-excision. I am praying for you that you get answers quickly. Good luck.
Dear VelvetPoppy: You must always remind doctors and nurses that you cannot have you blood pressure taken nor blood drawn/needle pricks on the arm that you had your SLNB. This is very important because your arm will always be compromised and lymphedema can occur at any time. You should also always wear a lymphedema sleeve if you fly or if you work out (with your right hand, i.e.-lift weights, etc.). I only had 2 lymph nodes removed so it is very doubtful that I will ever get lymphedema or cording but I wear a medic alert bracelet, just in case, that states, "lymphedema risk - this side". Listen to Peggy. She is our "Mom" and she looks out for all of us.
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Thanks 614,
I will look into the medic alert bracelet. I am careful with my right arm/hand. I always make sure only my left arm for BP & blood draws. Right now my exercise is just walking, but as my strength builds, I thought about weights. I be sure I have a sleeve before I start any strenuous routines.
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According to my new MO, the risk for LE remains forever. I have never worn a sleeve nor has one been recommended for me. Perhaps each doc is different.
HUGS!
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Poodles - So sorry about your mom, but what a blessing that you and your siblings are in agreement. May your mom be kept comfortable and at peace. Such a tough time, but sure that the loving guidance of your family will result in what is best for your mom. Sending hugs.
Peggy - Happy for you with the upcoming eye surgery. What a lift it would be to only need readers. Jealous
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Velvet Poppy - I also had 5 nodes removed and take the usual precautions. I am a year post-surgery next week and now regularly use 25 pound weights with no issue. I started with 10 pounds and have gradually increased. No issues and am really happy about the improved strength in my arms and back
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Katz, keep your fingers crossed that I DO just need readers. Glad I only have to pay for the mess and 1 Toric lens. I thought I needed 2.
Poodles, did they do a biopsy on your mother or was your sister able to nix it? What's next? Loads of love to you.
HUGS!
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Once you have any of your nodes removed or otherwise messed with, your lymphatic system (not exactly the same as your immune system) on that side in that “quadrant” is compromised. You are at lifetime risk of lymphedema, because lymph fluid doesn’t flow as easily through the “pipelines” of lymph vessels back to the nodes. Lymph fluid actually contains proteins, which if they stagnate can coagulate. “Cording” looks like you have actual “cords” or “ropes” beneath your skin. Doctors disagree about what the cords really are, but a consensus is emerging that they are congested lymphatic vessels (the vessels are just beneath your dermis). They can appear & vanish spontaneously, and careful PT involving precise massage & stretching can “pop” them so that the fluid flows normally again.
When lymphatic flow is weakened, that limb is more vulnerable to infection if the skin is breached and to swelling if too much pressure is applied unevenly (e.g., tourniquet or blood pressure cuff—also too-tight jewelry). If someone with a compromised lymph system gets a cut, needle stick or (more often) insect bite or burn (including sunburn), the area fills with lymph fluid—which contains the white blood cells that fight infection.
Yes, I said “blood cells:” the lymph and blood vessels run almost like parallel traffic lanes and by osmosis, lymph and blood can enter each other’s channels—white blood cells get into the lymph vessels when infection or the threat of infection occurs, and spent lymph fluid carrying the white cells and dead pathogens makes its way into the bloodstream—ultimately, by osmosis filters into & through the bladder and excreted in your urine. That’s why you have an urge to pee after manual lymph drainage massage for lymphedema: you really do have to pee the stuff out.
Lymph vessels, like blood vessels, have valves that help the fluid pulse its way up and back as needed. In an intact lymphatic system, the fluid from a perceived infection threat area flows back to the lymph nodes to be pumped into the bloodstream and eventually out. But a weakened lymph system has trouble doing that on its own. When that happens, the fluid pools and the extremity swells; but unlike in ordinary edema (which is retained water leaked out of cell membranes into the interstices and with proper treatment can find its way back into the cells from whence it came), in lymphedema it’s the protein-laden lymph fluid that collects & stagnates. If it stays stagnant, it can coagulate—and since it’s full of protein, which is a culture medium, unless it can get back to the originating nodes (most commonly in arm, breast & truncal LE, the axillary, i.e., armpit nodes) can become infected. And because the pathway for infection-fighting white cells to get to the infection is blocked, the infection can become cellulitis—which can be life-threatening unless promptly treated by systemic antibiotics.
Why wear compression for exercise & flight? Because you generally want the flow of lymph fluid to go towards the “source” nodes (usually axillary). For flight, compression helps prevent the swelling that can happen when the air pressure outside the body is less than the pressure inside the body. For exercise, your heart pumps harder and blood gets flowing to the part being exercised—but because they run in tandem, so does your lymph fluid. Again, compression helps reverse the flow and prevents swelling. Some specialists say you only need to wear compression for exercise involving that arm, others say because your blood circulation increases during general aerobic or cardio, you need to wear it then, too.
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Tamoxifen can cause cataracts. AIs can, because estrogen deprivation intensifies the symptoms of aging (think “menopause 2.0"), accelerate the development of cataracts you already had. BUT, once you have had your cataracts removed, neither Tamoxifen nor AIs can make them recur. Synthetic lenses don't have the proteins in them that your own natural lenses do, so they can't form cataracts. Those occasional delayed post-op “clouded capsules" can happen on their own for no particular reason, and tamox. or AIs don't cause them, either.
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Peggy, they are doing a liver biopsy this morning sometime. Mother was too weak the last 2 days to undergo that. She got two units of blood last night and she's getting plasma now.
One thing that has already come out of this hospitalization is that she realizes that she cannot manage on her own at home any longer. Now it's up to us girls to find a place for her
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Sandy, thank you for clarifying what I said. I lump the lymphatic system and immune system together which you rightly pointed out are not the same. It's a miracle our bodies work as well as they do since they are so complicated. Also for explaining much more clearly than I did about why cataracts can't "come back." I was hoping you'd chime in with the science behind that.
Poodles, I'm sorry your mother is having to go through the liver biopsy. And they are still doing it after she got so much blood and was so bad. I'm wonder what the point is (and I'm sure you are, too). That's wonderful that she realizes she can't live on her own anymore. I'm sure you thought that day would never come. Hope you find the right place for her. Loving thoughts and hugs to you all.
HUGS!
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~ChiSandy~
Thank you so much for the info. I didn't understand half of what I read about lymphedema, but you really clarified it for me. I see my MO in a couple of weeks and will ask him about a compression sleeve. I am also going to get a medic alert bracelet.
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Peggy, we are all asking the same question. What's the point of identifying cancer when they're not going to do anything about it. It won't change anything about the way she's being treated right now. On another note, we have engaged someone to help us find a memory care facility for her. We've talked to her LTC insurance agent and she is good to go on that.
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Poodles, the usefulness of the liver biopsy will be not to treat her cancer if it comes back positive for malignancy, but to assess her survival chances and overall care choices going forward depending on the results. It might, as Peggy says, convince her that she can no longer safely live at home—much less alone.
VelvetPoppy, your MO is not the one to ask about lymphedema—it’s a post-surgical issue about which your surgeon (or their NP, as was the case with mine) has more expertise, if any. (Few doctors get an adequate education about the lymphatic system and what can go wrong with it). Get measured for the sleeve & gauntlet—you don’t need a prescription unless you know your insurance covers compression wear AND the vendor accepts your insurance. (I had United ChoicePlus PPO, and the boutique accepted only BCBS). If you’re on Medicare, you will have to go out of pocket unless the Lymphedema Treatment Act (bipartisan, but stalled in the House & Senate as a hostage to various budget bills and ACA repeal) finally passes and is signed without being overridden. You can find an LE specialist &/or therapist at lana.org or via stepupspeakout.org. LympheDivas and CompressionSale.com have the lowest prices; the former has a wide variety of colors, patterns or styles. You need to wash & dry your set after every full day (8+ hrs) of wear, so buy at least two sets. If you wear them daily, their compression power will hold up for 6 months—longer if you rotate sets &/or wear them only for specific activities. (I have a whole wardrobe of them and never need to wear them longer than for a transatlantic flight—so when I reach my destination, I wash them in the sink and dry them on the shower rod. Some sites say to machine-dry or use a hairdryer so that the heat will make the elastic contract to its original strength).
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Poodles, I'm glad you have someone helping you find the right facility for your mom. Wonderful that she has LTC insurance. When we looked into it, it was beyond our reach. All so discouraging. But I'm glad that your mom will be someplace where she is safe and will be looked after.
HUGS!
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Poodles, before my brother passed, he refused to go to assisted living or anywhere other then back home, it was the hospital that wouldn't let him go back home and sent him to the nursing home/rehab to stay, and he didn't even stay there long, but if she does go to the dr. or hospital, they can decide that... my middle brother was taken across the state to a nursing home in Shelton, but I have a sister there that can look in on him from time to time... his dementia is gone to far, he thinks we put him in prison, and last I heard, he was still trying to find a way out... we can't even begin to try talking to him because his mind is gone and he wouldn't understand... we were fortunate, they were both in apartments and didn't have the financial problems to deal with.. and my brother with dementia had his home burn down before he came here and went downhill.. Keeping you in prayer... get some rest if you can... know how hard that is too..
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Well, I took a spectacular and embarrassing fall tonight. I was at choir and when I stood up to sing, my left knee refused to unfold so all I had down was my rt foot and left big toe. Music went EVERYWHERE!! Thankfully I wasn't on the risers, but standing on the floor or it could have been seriously bad. Now i hurt all over and I know it's gonna be worse tomorrow. Good thing I have a massage scheduled Friday --I'm gonna need it.
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Poodles, that sounds quite spectacular and hurtful. Damned knee. Aren't you planning on replacing it? I'm glad it wasn't more serious but I'm sure you will be quite colorful tomorrow. Hope not much pain. Poor baby.
HUGS!
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Yes, I need a knee replacement. As i lay there on the floor I had the thought that maybe I should shelve reconstruction and go for the knee replacement. For about a minute. But I think I'll be on a cane for the next few days.
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Poodles, glad you're ok. Hope you're not too sore tomorrow. Hugs!
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OUCH, Poodles! Your knee needs some custom bracing (to shift your weight to the less-damaged condyle so it doesn’t lock up) till you can get it replaced. Hope nothing was torn or fractured.
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