Dis Breast Cancer Survivors Part III - GAGWTA!

[Pea-n-Me]

I hate to say it, Marci, but it is 7 yrs from my surgery (and 6 from radiation to my axillary area) and I am still plagued with shooting pains from that entire area (and breast). They tell me it's extremely common, and I've yet, unfortunately, to find anything that helps it. I still have trouble even sleeping on that side due to discomfort. The way I figure it these days is that it was a small price to pay to live. But I know that may not help you much right now. I wish there was more I could offer. Some of the pain I feel is from the lumpectomy I had, which never healed properly before I had to jump right into chemo (and now I have a lifelong seroma in there), so some of what I have may not apply to you. But the shooting pains under my arm are definitely still there. Additionally, and I know this is from the radiation, sometimes when I'm in the midst of a hearty laugh, I get a shooting pain in that area that feels like I'm being stabbed in my lung and it literally takes my breath away for about 30 seconds or so, and again, they tell me it's normal. I've learned to live with it, but it does bother me sometimes. BTW I had mamms the other day and was a little unnerved when the radiologist wanted to look at my breast. I said, "Is everything ok"? (They are not usually very "hands on", kwim?) But she said "Yes, everything's fine. I just wanted to see the scar, and btw, how are you doing now?" WTH? LOL

 

[marcij]

I hate to say it, Marci, but it is 7 yrs from my surgery (and 6 from radiation to my axillary area) and I am still plagued with shooting pains from that entire area (and breast). They tell me it's extremely common, and I've yet, unfortunately, to find anything that helps it. I still have trouble even sleeping on that side due to discomfort. The way I figure it these days is that it was a small price to pay to live. But I know that may not help you much right now. I wish there was more I could offer. Some of the pain I feel is from the lumpectomy I had, which never healed properly before I had to jump right into chemo (and now I have a lifelong seroma in there), so some of what I have may not apply to you. But the shooting pains under my arm are definitely still there. Additionally, and I know this is from the radiation, sometimes when I'm in the midst of a hearty laugh, I get a shooting pain in that area that feels like I'm being stabbed in my lung and it literally takes my breath away for about 30 seconds or so, and again, they tell me it's normal. I've learned to live with it, but it does bother me sometimes. BTW I had mamms the other day and was a little unnerved when the radiologist wanted to look at my breast. I said, "Is everything ok"? (They are not usually very "hands on", kwim?) But she said "Yes, everything's fine. I just wanted to see the scar, and btw, how are you doing now?" WTH? LOL

Thank you for the info. I guess I'll look at the silver lining and know that it's not that I'm doing anything wrong, it's that there isn't anything as of right now to help. I'd rather hear the truth than something else, so thanks for being upfront!

 

[snappy]

I did not have the radiation, so my experience is different than Linda's.

My lymph node removal surgery was May 2004, so I am 6 and one half years out. I did have the full removal, I think they tested about 30.

The area was painful but did lessen over time. I am really not sure how long it took, but I remember calling the doctor's office about a week after the mastectomy because I could not believe how much the arm hurt, not just under but spasms up and down the arm. I was told it was normal.

I was not on anything but tylenol as the breast surgeon did not prescribe anything stronger.

After the left tram flap reconstruction I did have more pain, but it was the abdomen.

I still think time will be your friend. Having bilateral mastectomies and reconstruction is extremely difficult surgery and your body is coming back nicely. I think your youth is a definite plus (I was 50 and not yet in menopause but not in th best physical shape).

I do think every woman's physiology is different, hence the differing number of underarm nodes in different women. I also think the skill of the surgeon makes a difference.

Marci, are you doing in exercises yet with your arm? You do not want to let it get frozen if you can avoid it. What about asking for a visit with a physical therapist?

I would be happy to scan and email you the pages of exercises from the pamphlet my hospital gave me at surgery. Let me know if that would be helpful.

I also was screened for lymphedema at aobut a month after the mastectomy.

 

[luvmarypoppins]

Good afternoon ladies

Marci - I hope you are healing and the pain is getting bearable. Hang in there. You are doing great! We will be at the Poly Dec5 and 6 and then the Yacht Club the 7th to 12th. I know you are looking forward to your trip too. When do you leave?

Linda - how are you feeling and how goes the testing?

Cheryl - wishing you all the best too. I am sure you are looking forward to your trip too

Lisa - How are you feeling sista? Sending you prayers and good thoughts.

KJ - how goes the healing?

Laurie - How was the thanksgiving dinner. Just wondering what the vegetarians ate?

PatsMom - is this your last treatment? I am a little lost with the count. Wishing you all the best too.

Sha,Ann, Barbara and everyone else too. GTAGWTA

So did you see my post on the pre lit christmas tree thread. Lets just say with 3 men in the house working on that thing, there were alot of tempers and testosterone flying yest. Suffice to say the bottom does not light and dh wants to rip the whole thing apart again if he has time tonight etc. Ds19 picked out our angel tree kids. Very easy this year. A boy wants a wal mart gift certificate. I think I will include some candy too., They are very strict about not going over the limit, but I think some candy would be o.k. and then there is another 4 month old little boy and it says any toy. So I will look at stuff etc. I need to have that in by sunday. The ds wil take it. The ds autistic friend took our family picture outside by the front door. It was an adventure. I gve him a candy bar for helping us out. I know ds always photoshops it with borders, dates etc. We had to be casual. They refused to do a dress up one at church. I liked to do it there since I know they would never do it at home etc. No one cooperated as usual.

Have a great day everyone. Blessings always.

 

[marcij]

Good afternoon ladies

Marci - I hope you are healing and the pain is getting bearable. Hang in there. You are doing great! We will be at the Poly Dec5 and 6 and then the Yacht Club the 7th to 12th. I know you are looking forward to your trip too. When do you leave?

Linda - how are you feeling and how goes the testing?

Cheryl - wishing you all the best too. I am sure you are looking forward to your trip too

Lisa - How are you feeling sista? Sending you prayers and good thoughts.

KJ - how goes the healing?

Laurie - How was the thanksgiving dinner. Just wondering what the vegetarians ate?

PatsMom - is this your last treatment? I am a little lost with the count. Wishing you all the best too.

Sha,Ann, Barbara and everyone else too. GTAGWTA

So did you see my post on the pre lit christmas tree thread. Lets just say with 3 men in the house working on that thing, there were alot of tempers and testosterone flying yest. Suffice to say the bottom does not light and dh wants to rip the whole thing apart again if he has time tonight etc. Ds19 picked out our angel tree kids. Very easy this year. A boy wants a wal mart gift certificate. I think I will include some candy too., They are very strict about not going over the limit, but I think some candy would be o.k. and then there is another 4 month old little boy and it says any toy. So I will look at stuff etc. I need to have that in by sunday. The ds wil take it. The ds autistic friend took our family picture outside by the front door. It was an adventure. I gve him a candy bar for helping us out. I know ds always photoshops it with borders, dates etc. We had to be casual. They refused to do a dress up one at church. I liked to do it there since I know they would never do it at home etc. No one cooperated as usual.

Have a great day everyone. Blessings always.

I haven't been following the pre-lit tree thread, but whenever I have a problem with part of it not lighting up, I just stick in a couple of strands of lights over the other lights and you really can't tell.

We leave the 17th and return on the 23rd as we have too many family things going on to get to stay.

I have a question for all you ladies out there who have done the bi-lat with flap reconstruction. I know everyone's pain tolerance is different, but how long did you take the pain meds? I have a feeling that the muscle relaxers will probably need to be taken for a longer period than the pain meds as my lower back is really bad, and they are only taken once every twelve hours. Keep in mind I have arthritis so I am taking celebrex, (but they won't let me start back on the methotrexate or humira yet so I'm still having problems with my hip, fingers and toes )but that also means I really shouldn't be taking aleve, motrin, advil etc. because the celebrex has the same drugs in it and that would be too much. I am only taking the pain meds when I get up, about late afternoon, and right before bed, so only three times a day. Sometimes that seems to be fine, and other times it seems like I'm really grinding my teeth to get out of a chair or try to do any housework. Can anyone tell me their experiences and how they managed? (as a reminder, I'm two weeks out from surgery.)

 

[luvmarypoppins]

Good afternoon ladies

Marci - I am sorry that you are dealing with the pain issues. I know the ladies here can address that better than me. I know they always told me in the hospital, always stay ahead of the pain because if you try and play catch up its harder to manage. So dont wait to the last minute until its getting unbearable etc. This past stomach surgery I had to switch to the pain med without tylenol in it, that way I could take just the pure pain med every 4 hours and not worry about the tylenol messing up my liver etc. and I got the 2 hour difference versus the 6 hours for with tylenol and taking it 4 hours with just the pure pain med.

Also dont push yourself at Disney. Use the wheelchair if you have to and go take a nap if you need it! You have to take care of yourself first. Your family will understand for sure.

Lisa,KJ - how are you both healing??

Well I think I almost fainted yest. The drs. office actually callled me back about my blood test. Yup, no 5 week wait this time. It was about 10 days. They said the potassium is normal. yeah, so I dont have to stress about heart stuff etc. right now. Ds19 is going with 2 girls to the city on the train to see the Christmas tree lightining in Rockefeller Center tonight. I am booking a town car today. Dh hates the Magical Express. Looks like we are getting out of Dodge, um I mean NY right on time. A bad cold spell is coming.

GTAGWTA. Blessings to you all always.

 

[snappy]

Marci, I am not sure anyone that posts here regularly had a double with flap reconstruction. I had only the left side done and there was a 2 year spacing between the two surgeries.

There is a website that Laura (Laura and Linda were the sweeties that started the original GAGWTA thread in 2005) posted about long ago a website called facingourrisk.org. It is more directed at women (and men) who have had or are trying to decide on having surgery because they or a family member carry the BRAC gene.

A number there have had prophalactic surgery, some doubles.

Maybe you could join over there or at least fina a thread where you could read about others' experiences.

I have not been over there recently but I did go there when I was contemplating my delayed reconstruction.

For my personal experience, I could only tolerate the presecription pain medicines for about 4 days since it wrecked my gastro situation and prevented me from being able to go to the bathroom, even with laxatives.
I moved to tylenol, on a very regular schedule. I can't say that tylenol took away the pain but after 8 days I was at least able to get in and out of the shower by myself.

I think having a double, and having the reconstruction at the same time as you did is a very different experience than I had. You should discuss the pain with your doctor. If the pain meds are not causing you the issues I had, I don't think you should try to get off of them so quickly.

I have had several instances of muscle spasms since 2006, some worse than others, most recently when I was in Orlando for a class. The muscle relaxers helped in most cases, although on my trip I had to have a few Vicodens that my doc called in to a pharmacy to be able to function at all.

I find the spasms very dibilitating when I get them (had at least 3 bouts of it after the injection for my rotator cuff tear this year back in August, mostly in the abdomen and back, once in the affected arm and shoulder). I am not sure but I think having the flap surgery might make a person more prone to spasms since the compromised muscle in the stomach makes you weaker.

I am not in the best of shape. When I did my physical surgery for my arm, I asked the doctor if I could have the PT's help me with some exercises to lessen future spasms. One of the PT's spent a good bit of time showing me some new exercises. I try to do them often and am hoping that with strengthening my abdominals, and using the muscle relaxers occasionally, I can lessen the effects of future spasms.

Not sure if this is helpful but mainly I think the level of pain you are experiencing is not surprising, especially since it has been only 2 weeks. Ask you doctor to confirm but you had such extensive surgery. The muscle is your stomach was cut and lots of nerves were disturbed and are still angry.

Please continue to let us know how you are doing.

PM me if you want to talk further, or talk by phone at any time.

 

[marcij]

Thank you so much for the replies! It's so helpful to hear different opinions and advice.

I hope you all have a fantastic day!

 

[wdw4us2]

Feeling a little down today. My friend who was battling lung cancer passed away early this morning. Even though we knew it was coming, it doesn't make it hurt any less. I have to step up my recovery so that I can attend the memorial service.

I'm getting better with each passing day. I'm still having some issues with gas pains and none of the over the counter stuff seems to help. I'm eating the blandest food possible because I'm starting to get my appetite back and need to eat more than I have been.

marcij - I hope your recovery is moving along without too many pain issues.

 

[marcij]

Lisa -- I'm so sorry. I hope you are feeling well enough to to to the Memorial service.

GAGWTA

 

[luvmarypoppins]

Good afternoon ladies

Lisa - so sorry about your friend. Sorry about your stomach issues too. Keep up the good work with getting better and healing!

Marci - hope the pain is manageable

KJ - how are you feeling?

Laurie - I thought of you and I am entering a contest to win 2 nights at the Waldorf Astoria. Hmm, your pictures come to mind of your great stay there!

Well I have been following the Florida weather like crazy. It doesnt look so great. Maybe we can get 1 day of swimming in. One word - layers! I am getting excited.

Dh is talking about taking ds19 and ds 20 with him to China next month. Ds18 went to the cadaver lab yest.. He is talking about nursing alot lately. We will see. He is probably going to get a B in Ant. and Phyis. I think that is good. He said half the class has dropped out and the rest that are there they are taking it for the 2nd time. Its only his lst time and he has a good grade so I am proud of him!

GTAGWTA. Blessings to you all always.

 

[KJ Luvs Pluto]

Lisa - I'm so sorry to hear about your friend. I hope you are feeling well enough to attend the memorial service. We had a friend die a couple of days after my surgery and I was grateful that I was feeling well enough to go. So my thoughts will be with you.

Marci - Keep up the good work of healing. You have had a lot to recover from but it sounds like you are doing great.

I appreciate everyones thoughts. Work has been crazy and when I get home I'm tired and since I still can't lift much or stretch - all my housework and cooking takes soooooo much longer that I feel like I'm chasing my tail trying to get just the minimum done. And we are supposed to get a major snow storm this weekend. Since I can't lift much I'll be shoveling with a teaspoon . Our driveway is only 120 yards long so that should take me - what - 3 days or so . Or maybe I'll just ask my DH to do it just this one time this year. Pretty please .

Well, I hope everyone has a great weekend.
MaryAnn - Have a wonderful trip.

GAGWTA

 

[luvmarypoppins]

Good afternoon ladies

Did everyone see Lindas dog and hamster picture thread?Too cute!!

Well dh and the ds are going for 9 days to China. Good thing is that it is on the airline we need for the ff miles. Hello disney trip in May!! Bad thing is ds22 will be here with me and he is a little on the clueless side when it comes to home maintenance etc. Example - used a shovel to clear the ice and snow off his car once leaving a huge scratch on the hood etc. You get the picture.

I am so not liking the weather forcast for our trip. I do not tolerate the cold at all. Dh gets grumpy when its cold. I am thinking of bringing some hot chocolate and apple cider packs to use. We will need it for sure.

Dh already has to fax alot of stuff on monday he said. We will see what happens. Great way to start off our vacation. I better get a Poly balcony room so I can kill the time while he is working etc. He will bring the laptop, so I might touch base if I can with a little update.

My friend told me her dd lost her baby. It would have been their lst and the lst grandchild too.

GTAGWTA. Have a great week end everyone.

 

[Pea-n-Me]

Did everyone see Lindas dog and hamster picture thread?Too cute!!

Thank you! I was planning to post it here as well. My two babies, lol. http://www.disboards.com/showthread.php?t=2608412&referrerid=70088

I took some pics of the sunroom last night with you in mind, lmp. I didn't like how they came out in artificial light, though. During the day in natural sunlight the colors are amazing and sunny, with a beautiful, yellowish glow. So I have to take some more. But here are a couple for you now anyway.

Looking out to sunroom from kitchen. PS I love it but that is one cold floor in the winter!

Oh, and you asked about testing. Mamms were good. Check. Endometrial biopsy pushed up to January as DS was quite sick on day of test, so I took him to doctor's instead. Thanks for asking. Will keep you updated. (I think they're overreacting anyway, fwiw.)

 

[Aliceacc]

It's been a long time.

I had pretty much decided, not really consciously, not to post here, to put it all behind me and move on.

Then in June, a mamo revealed a lump on the side I still have, Fortunately, my surgeon is a total sweetie and got me in right away, thank God it was nothing.

Yet here I am, with another plea for information.

One of my close friends was diagnosed with endometrial cancer a few weeks ago. She had a hysterectomy the week before Thanksgiving. Her type is appararently pretty rare. It has a 50% rate of reappearing if she doesn't have chemo and radiation, so both are being scheduled.

She's the mom of a 10 and a 14 year old, and she's terrified.

I'm hoping for anything at all that will help her, to get through (Ok, that word got edited out. It's where you might expect endometrial radiation to take place) radiation or chemo -- any hints or ideas that will smooth the way for her. I had suggested that she join this thread, but she's done some hunting on the internet and is now afraid to go near it--- way too much scary info there.

My radiation was up on top, so my hints on sports bras and blazers aren't of much use. And I was fortunate enough not to need chemo.

You guys were a Godsend when things got bad for me, and there's not a day that I don't thank God I was lucky enough to find this thread. Now I'm hoping you can help me help Alicia.

 

[MerryPoppins]

I think of you often, but I can't seem to post here. My posts just don't come through. This is a test.

 

[MerryPoppins]

Wow. That worked. I'm well. My daughter has been the one with challenging health issues. She has been diagnosed with Trigeminal Neuralgia and is being watched closely for signs of MS.

 

[phorsenuf]

Wow. That worked. I'm well. My daughter has been the one with challenging health issues. She has been diagnosed with Trigeminal Neuralgia and is being watched closely for signs of MS.

I wish your daughter well. I had an episode of TN and it was awful. I feel for her. I'm being monitored as well for MS but still no lesions. I've had many signs and symptoms but until they find lesions they "ain't calling it."

Still no report yet on my follow-up mammo from the 26th. I see my pcp tomorrow so hopefully she'll have something for me.

 

[MerryPoppins]

I still have to keep my posts short but at least I can post. DD is 19 and they did find lesions at her MRI. She has another this month.

 

[snappy]

I tried to post last night but lost the post when I hit the submit button and called it a night.

Marci, how did you weather the weekend? Are you feeling any better?

Lisa, I am sorry about your friend passing. I hope you feel strong enough to attend the memorial.

KJ, did you get the big snowstorm? Please take it easy girl. Shoveling snow is hard work!

Great to see you Alice. I understand your feelings about wanting to put it behind you but I am thrilled to get an update on you. Sorry about the scare this year. It sounds like the lump was removed and it was benign? Thank goodness.

I can't help on your friend Alicia's diagnosis. Perhaps others here can. I think Linda posted above she had to postpone her endometrial biopsy until January. Knowing Linda, she probably knows alot about the condition.

How long has it been since you posted here? How is school?

Linda, I so love the look of your sunroom. Thanks for posting the pictures and do post pics in the morning light too. I love the french doors, the furniture, the color scheme, but that floor is to die for!

It will be a perfect retreat as it warms up. How cold is it up there anyways? We got below freezing last night and I can't get warm. Our houses down here are really not made for this cold business. We got a new high efficiency a/c and heater system for the bedroom section of the house and it is nice and toasty back there, but the tile and wood floors in the rest of the house feel chilly, with the older model heater chugging along. I am not a slippers kind of girl so I guard my birks from Naj. I need to go dig them up.

Merry, the post that went poof for me last night mentioned how much I miss some of our thread group we have not heard from, like you and looking forward (Maureen).

I am so glad you posted. I am glad you are well, but I am so sorry about your daughter's illness. Has she missed much school? When was she diagnosed? Is she living at home?

Is your son and his fiancee married yet?

I miss you sista, and your wonderful posts.

I hope you can continue to post, even if they are short. Gosh we missed you.

I think MaryAnn is in WDW by now, right? MaryAnn, if you are able to get on the internet down there, I hope you have a great view from your balcony!

GAGWTA all!