January 2016 Surgeries
Comments
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aw, virginia123, I wish I were in Virginia, but I am trapped way down in Dixieland across from cotton fields now fallow for the winter. I lived in Richmond for many years, and I know many of its streets very well. I am unable to leave the Deep South for a host of reasons, but I decided tonight that I am not going to assume I will be living out in the country forever. And, if I am, it will not be the end of the world. I am a writer, and I can live anywhere. Thanks for thinking of me and for giving me the cleaning link. Yes, I am also helping care for my mother. I guess saying too much about my family might be off topic for this thread so I am trying not to say too much about my mom.
I am now 225 miles away from home with two post ops this week at the teaching hospital and comprehensive cancer care center where I am being treated. I am going to read the other posts and try to catch up and then I may write a little more. It has been a long day traveling here, and I am wasted.
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Well, I wrote a very long post addressing issues and concerns that are cropping up on this thread. The post disappeared. I am upset because I wrote some comments that were in my opinion important and pertinent. I am now exhausted. I have a post op with the breast surgeon tomorrow morning. I will try to find the time to do another post as soon as possible.
In the meantime, Balthus, be grouchy. You have earned the right to be out of sorts. I suspect you are tired. Please have a healthy respect for the physical and emotional assault you have experienced. A patient guide for the comprehensive cancer care center where I am being treated says it succinctly: "Cancer treatment can be brutal." Be kind to yourself, Balthus. Be gentle with yourself. It takes time to heal.
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Thank you all for the welcome!. I will never be able to keep up with making comments to everyone, so please excuse my spotty posts in advance.
Kessa, I have a lump on the bottom of my ribcage kind of like you describe. It has been there for at least several years. Last November I decided to have it looked at, because it gets sore sometimes. Right after my primary care dr scheduled me with a surgeon to "pop it off", I got my breast cancer Dx. I saw the surgeon anyway. He thinks it's a lipoma. So did one other doctor. However my primary care guy and my MO both said it did not feel like a lipoma, but couldn't say what else it could be. None of the four doctors thought it was worrisome (it is well defined and mobile). Now I'll have to wait until I'm through with my cancer treatments to find out what it is. But I want it gone.
Virginia, thanks for the post-op exercise feedback. I didn't follow the driving ban order very well. And after the first week I would sometimes forget to only raise my arm 90 degrees. I asked her about walking and she was in favor of it. I specifically asked "a lot of walking?" and she said it was okay, so I'm back up to my 15,000 steps a day.
I'm not glad to have cancer, but since I do, I'm glad to be here.
Alice
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1/21/16 bmx with expanders lymph node biopsy
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on my way to B'more and got a call from MO office - they have to reschedule since the doctor is out sick - argh! At least I'll see the RO today.
Carjeanne - welcome to our group! Hope you are recovering well! I'm 3 weeks out from my UMX and feeling pretty good. I got up to use the bathroom last night and thought "why does my shoulder hurt? Oh yeah, I had a mastectomy!" LOL - I had actually forgotten about it for a minute
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Thanks all for the kind words and pep talk yesterday.
I decided to try to go out on my own and drive to Walmart yesterday to look for some Genie bras recommended in the non-recon forum.
What an adventure.
My car door is heavy so I have to be careful not to pull open too far or I can not reach to close.
Backing out of our garage was a challenge.
I went around 2 to avoid rush hour and driving itself was ok (no pain meds yesterday). Only had to go a few miles.
Trying to pull a cart out was first hurdle.
Navigating thru the store was fine & I found what I was looking for although I shall be returning today as these run small.
I decided to pick up a few things we needed and was so embarrassed to have to ask a woman who worked there who is shorter than me to hand me something from an upper shelf. She looked at me like I was crazy.
I felt like I was walking so slowly.
All was ok until I got to my car and popped open my trunk with my key fob.
Problem is fob doesn't close the trunk & I couldn't reach the button to close it & had to wait until someone pulled into a spot near me.
I am just not used to asking for help & it's weird when you outwardly look ok so people kind of look at you funny.
I will certainly be less judgmental seeing cars with handicap tags and people getting in or out of them that look fine.
Anyway a dear friend who is a massage/aromatherapist/lymphatic drainage specialist brought us dinner last night and she had been the first person besides my husband who saw me nude after surgery the day after I got home from the hospital. She took a look at me last night and definitely saw improvement in 2+ weeks.
She works with a lot of cancer patients and thought my incisions and scars look good. She is concerned about the swelling under my arms (not arm pits) but upper arms (the lower flabby parts).
She does not think lymphedema but she told to try to wear a long sleeve tee shirt if I can get over my head that is tighter than usual but not tight like a lymphedema sleeve.
She also told me that the "lumpy" thing back behind my right shoulder may be a dog ear even though my surgeon was supposed to make me flat but she said give it some time and I can deal with that later.
She also told me to be sure to watch my posture, do lots of beep breathing and to try to "push" my chest out without moving my shoulders & to definitely start using oil or lotion on my neck and chest as I am getting very dry flaky areas.
I did end up falling asleep again last night watching tv but I slept from midnight-7 so woke up feeling better today,
Dread returning to WalMart but it will be my exercise today.
Wishing all a good day.
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Balthus-- sounds like quite an adventure. I still haven't driven since surgery. Thanks for the tips on stretching. I have a lot of tightness and doing small stretches help to loosen thing up. I wonder if I have a little fluid build up. The tightness is not totally not tolerable but just uncomfortable most of the time
Grandma3x. How frustrating when you have to reschedule appts.
Welcome carjeanne3 and moonstruck. This is a great place to ask questions, vent and get great information.
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Hi, Moondust. A few years ago, I noticed a well-defined, mobile lump on my back. I was pregnant at the time and my OBGYN thought the lump was a lipoma. It is still there, unchanged, many years later. It also gets a little sore sometimes. The lump on my rib feels similar, but smaller and a little harder, almost like a small marble. My BS looked at it on ultrasound and said it is definitely a lymph node. Before my breast cancer dx, I would accept the benign explanation for things, thinking I am young and healthy so it is probably nothing. I guess that feeling is gone forever and I will now always jump to the worst case scenario.
So, I guess it is pretty clear that I am feeling grouchy and down. I feel like there was a certain relief getting through major surgery without complications. Now that is wearing off and I am just plain scared that my future is uncertain. If any of you feels the same way, you are definitely not alone.
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Woo-hoo! No rads for me! Relieved but also a bit scared (I've been burned before...). Finding it hard to trust doctors who are trying to be reassuring.
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Everybody, I just saw the breast surgeon. My path report was completely clean. I am cancer free. The breast surgeon was able to remove a large tissue mass due to the fact that she knew the plastic surgeon would immediately do the breast reduction and breast lift and fix possible deformities from the cancer surgery. The radiation oncologist says given the negative results, she does not recommend radiation. I am waiting to have a bone scan in case I want to consider AI drugs for chemo prevention.
I wept with relief and joy and the breast cancer surgeon hugged me.
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grandma3x. That is great news!!!
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That's great grandma3x!
I am still in the relative hell that is trying to decide about rads. Apparently I'm in a gray area and nobody can really tell me what my recurrence rate is currently, which makes it super hard to decide on rads. I had clear margins with the invasive part of my cancer, but <1 mm with the DCIS, at the superior skin margin. DCIS has low recurrence post-mastectomy even with close margins if it's low grade (mine is low there, low to intermediate near the tumor). But that's in people without associated invasive disease, and I do have that. I'm going for a second opinion on rads (at the recommendation of my rad onc) to help me decide. I HATE gray areas!!!! Also it's complicated for me due to history of 10 year radon exposure making my risk of lung cancer greater. UGH.
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Decisionfreak---- that is also great news!!!
So good to hear good news today!
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blue heron-- ugh I hate the not knowing. I opted for bmx for my dcis biopsy to avoid rads and taking hormone therapy but knew it would be determined with final path results as long as it came back with just dcis. Luckily that is what it came back with. I would definitely seek another opinion. I have found that different doctors have different insight
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Thanks jr114. The uncertainty and decision making is the worst part of this whole nightmare.
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Grandma3x + DecisionFreak: Congratulations to you both! What great news.
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congrats on all the good news today
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Welcome carjeanne3! Your date is posted and we're here for you if you want to post more.
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grandma3XDecisionFreak - wow what great news for you both. Congratulations and enjoy this magical day!
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Welcome to Moondust and Carjeanne.
I love seeing good news on our thread! Congratulations Grandma3x and DecisionFreak! I'm so happy for you both! What great news.
edwsmom: I'm glad your BS is going to get some clarification on the pathology report. Bummer you have to wait some more.
BlueHeron: I hope the second opinion will clarify your situation. It's so hard to be in that gray area.
Jr114: I hope you are feeling better today.
Moondust: I average between 4 and 5 miles a day, which is about 8 to 10,000 steps for me. I am very impressed by your totals. Walk on, girlfriend!
Balthus: I hope you are resting today after yesterday's adventure. You may be overdoing it.
stellamaris: I'm so sorry you had a reschedule out to March. We'll hold your hand in the meantime.
Little milestone for myself: today I wore a pull-over top for the first time since exchange surgery.
Love to all,
Mominator
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Mominator--- that is great .....sometimes it is the little things....sometimes it's the big things that make it a little better day!!!
I am from the Jersey shore area as well.....hoping no snow!!!
Have a good night!
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Mominator: I went back to Walmart today - no rest for the weary but I slept better last night.
JR114: originally (and always a Jersey girl even after 23 years in Texas) - grew up in Paterson!
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FYI I emailed the mods to ask about donating some unused items to someone in need and they told me there is a forum so here is the link if anyone has anything now or in future. Pay it forward: https://community.breastcancer.org/forum/149 Donations
Forum: BCO Free-Cycle: Give or trade items related to breast cancer —A place to donate & trade breast cancer items free of charge (e.g. head covers, mastectomy products, swimwear, breast cancer support products). No money may be exchanged, even for shipping. All mailing addresses must be shared via private message & no phone numbers exchanged.
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Balthous---- Mainland side of Long Beach Island. Hopefully another good nights rest
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hello. So things changed rapidly for me before my surgery on 1/29. The plastic surgeon contacted my BS and offered to do whatever was necessary to get the TEs in place on the same day. They called me at work and have me an hour to make my decision. So I decided to go ahead with the plastics as well.
I have a lot of issues with pain that is not being controlled by narcotics. I had researched marcaine pumps and requested one. The morning of my surgery the PS said he had consulted with his wife (an anesthesiologist) who suggested a paravertebral block. It was not fun but worked well for the most part.
On Tuesday PS removed the marcaine pump. By Wednesday I could really tell a difference! My "breasts" feel like someone took my skin and sewed bricks n place. Th are hard and painful.
I hope to get a call from the BS tomorrow with my patio. All I know is one of the sentinel nodes was positive and others looked swollen so she took out a chunk more.
So that's my story for now
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Hi Melgirl...
I am 3 weeks post op yesterday and things seem to get a little better everyday. I hope the coming days improve for you as well
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Melgirl - Sending gentle ((hugs)). Feel better soon!
Balthus - glad you are sleeping better! Thank you for posting the link for the free-cycle. I have a few items to post.
DecisionFreak - yay!! Cancer-free is now my favorite hyphenated word!
BlueHeron - I agree that being in a gray area is the worst! I was expecting the RO to recommend rads for me and while I'm relieved that she did not, I kind of feel like I may be under-treated.
Moondust - 15,000 steps a day- Wow! I tried to do 10,000 a day before surgery but rarely made it. I walked 22,000 in one day last year while doing research in Antarctica, but I consider that an anomalySince surgery I've been hitting about 5,000 a day. Today I'm at 6,300 because I had to go to the mall to buy my grandson a birthday present.
Have a good evening everyone! -
BlueHeron, I am so so sorry you are suffering through the gray area. Radiation is a short-lived therapy. Its effects do not linger. Have any of your doctors suggested Tamoxifen for long-term protection? I am assuming you have not gone through menopause yet. It may or may not help you to know that radiation for DCIS does not improve overall survival, but that may be for those without an invasive component. Radiation treatment has improved greatly in fewer side effects. It also depends on the side of the body where you had the mastectomy. Yours is on the left I see. I would explore with the doctor giving the second opinion if you could have a short course of 16 to 20 treatments as opposed to six weeks that is typical. You get the same amount of radiation but I have read that the side effects are fewer with the short course than with the longer course. I would also ask if radiation will improve your overall survival given you have an invasive element. I would also ask if they can reduce your heart and lung exposure by placing you on your stomach and doing the radiation treatments from below. I would want to know everything about how you can protect your heart and lungs. Do you know for a fact that radon exposure will increase your risk? It is always a matter of knowing how much risk and whether the benefits outweigh the risks. I would also call the American Cancer Society and ask if they can email you any information about radiation treatments and the various options. They sent me a long document on lymphedema last night because I wanted to know how to protect my mother. I will be thinking of you and sending out an SOS to the universe! Somebody got mad at me on another thread when I said I would pray for someone. I think we are supposed to stay away from anything religious on this site.
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DecisionFreak, thank you so much! I will take any and all SOS's, prayer, and advice!
I will use your ideas as I compile a list of questions for the second RO. It all feels like such a gamble and I so wish I had a Crystal ball. Your point about survival vs recurrance is a good one too. I see the RO on Tuesday. I meet my MO on 2/23. Even though I'm only 46, it has been about a year since my last period so I think I'm peri/post. I'm also osteopenia though, so they might choose tamoxifen anyway, not sure.
I have simulation tentatively scheduled for 3/8, understanding that I can cancel if I want.
It's so nice to be here, where people understand the crazy angst! Especially when ones husband has only so much tolerance for re-thinking and examining and processing
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BlueHeron, I started a thread many months ago on the changing standard of care for DCIS. DCIS is am umbrella term for many diseases with different characteristics. The standard of care has usually been lumpectomy or mastectomy and radiation. However, the stark truth is that doctors have the technology to detect DCIS, but there is no solid research base on how to treat DCIS. That is because it requires clinical trials to segment those with various forms of DCIS and test various treatments. Doctors are not totally in the dark but it takes nerves of steel to insist that the treatment plan fits you as precisely as possible. It takes a warrior mentality.
You may be surprised to know that researchers are testing the use of antibody therapies and vaccines for DCIS. I know because I asked ACS to send me a list of clinical trials that I might consider joining.
Can you travel to Duke University for a review of your case? Duke and UC, San Francisco have the top experts and ongoing research into DCIS. Also, I mentioned Michael Lagos. He is reputed to have a remarkable ability to cut through the fog and make recommendations. I know he is expensive but I have read that he has superb judgment.
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Thanks DecisionFreak. I think the main reason I'm so stuck is because I didn't only have DCIS. I also had IDC. So I think that means that my DCIS did in fact become invasive, so there is no reason why it wouldn't again. Ugh, when I say it like that, it seems obvious I would need rads. But my MO who is really amazing and extremely research based was quite equivocal. I'm very interested to see what this second RO says. Maybe he has a different perspective.
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