Dis Breast Cancer Survivors Part III - GAGWTA!

[Aliceacc]

Tru blue, I'm hoping it went well today. I had my mastectomy last September 10-- next Wednesday will be my first anniversary. (How do we celebrate that ladies??) I didn't have any choice as to a lumpectomy-- the Phyllodes tumor in my breast was the size of an orange and took up most of the breast.

Snappy mentioned temporary nerve damage. For some bizarre reason, I figured out how to stop the burning in my back: I just touched that part of my skin with my other hand. For some reason, that immediately helped. It was a little awkward, but gave me instant relief.

This thread gave me so many little tidbits that made the past year do-able! Probably the best was that they sell sports bras that zip up the front. I got mine at Sears for about $15 each, and they were lifesavers. I teach in a co-ed high school, so those bras and a collection of blazers were my best friends. I wore a blazer to school every single day last year (and am SO excited not to have to wear one this year!!)

Thanks to the warning of the ladies here, I got several large button down blouses for those first few days. I was able to pin my drains to them, and to get in and out of them without a problem.

For me, at least, this whole process has been fairly painless. I think that's important to know, since it's one of the fears right in there with the others. Mastectomy, reconstruction, radiation-- nothing really hurt.

My friends were amazing, making dinner for my family that first week. (At the time, my father in law was dying-- his anniversary is the 18th-- so my husband wasn't around as much as he otherwise would have been.) But any meals that can be pre-cooked or delivered are incredibly important. And offers to wash mom's hair in those first few days will be gratefully accepted; she won't be able to raise her arms up that high at first.

 

[Sha]

Aliceacc, my mom was at Disney when we realized it was one year. She slow danced with the Beast that weekend too if I am not mistaken. We were walking along DTD when I realized it.

I know I havent been around much ladies... trying to get back into things, but you are all in continued prayers and thoughts.

 

[MoniqueU]

Butting in here. I have passed this thread many times thinking of you all as my mom is a long term breast cancer survivor.

I have had one suspicious mammogram, then another diagnostic one. They didn't like what they saw and I am scheduled for a stereotactic core biopsy.

I am pretty fatigued for some reason that I don't understand. It has been an emotional month besides the tests but I am in bed by 8 most nights.

Any good thoughts you could spare I would appreciate. I know the statistics are on my side but with my moms history it gives me pause for concern.

Thanks

 

[snappy]

Butting in here. I have passed this thread many times thinking of you all as my mom is a long term breast cancer survivor.

I have had one suspicious mammogram, then another diagnostic one. They didn't like what they saw and I am scheduled for a stereotactic core biopsy.

I am pretty fatigued for some reason that I don't understand. It has been an emotional month besides the tests but I am in bed by 8 most nights.

Any good thoughts you could spare I would appreciate. I know the statistics are on my side but with my moms history it gives me pause for concern.

Thanks

Two things come to my mind, first I like the word caution rather than concern. It is better to err on the side of caution. I am glad they are checking it out. My impression was that if the mammogram turned up to be at the radiology Bi Rads level 4-suspicious, you generally want that biopsy. And that really is all it is, suspicious. My sister and I both had level 4, her biopsy was within weeks of mine, her area was benign, mine was not.

I think Mammoography is good but it has its limitations for sure, especially with younger women, or anyone with dense breasts.

Second thing that comes to mind is a great saying coined by the husband of one of our original thread groupies here who was diagnosed right at the beginning of the thread. We have not mentioned it lately but it bears repeating.
"Don't bleed until your shot." It is not meant to be hurtful but just a headsup that you are early in the game. It is hard not to jump ahead. I remember myself reading everything I could get my hands on before my biopsy. It is so difficult waiting until the day of the test, and then waiting for results. I think waiting is worse than knowing, even if you do need treatment.

It is that scary unknown.

When is your stereotactic needle biopsy scheduled? Several of us have had the same test, so ask any questions you might have.

First you should know it is more scary than painful. I remember being so nervous I was shaking before, during and after the biopsy. At my breast center they cover you with warmed blankets and play calming music. I also had a dear of a nurse who I found out later was also a survivor whose job duties were to stand by my head and talk to me and rub my shoulder! No fooling!

I would say it is ideal to have someone with you to distract you beforehand in case you have to wait before the procedure.

You might want to pick up a trusty bag of frozen peas to wrap up and place on the biopsy site afterwards.

Be sure and find out how long results will take, and how you will obtain your results. Some docs like to call you immediately after he/she receives them to avoid delay since they know how difficult waiting is. Others might prefer to give the news in person. Think about what YOU prefer and mention your wishes.

Also, I would ask for a copy of the pathology results.

That is all I can think of. Did a breast surgeon order the biopsy?

Lastly, I would say I am not surprised by the fatigue. Going through this process drains you emotionally. Fatigue is common during this level of stress. It is good that you are going to sleep at 8 pm, but your quality of sleep might not be the same as your sleep under normal conditions.

Let us know how this goes. Glad you posted.

 

[laurabelle]

~~~***GAGWTA sistas***~~~

Monique- I'm sorry you have to go through the biopsy. Even if you are handling things on the outside, it is exhausting. Sometimes going to bed early and shutting out the world is a good thing. When is the biopsy? Yes... use a bag of frozen peas on the site, it molds easily to the contours. Thinking of you, please keep us posted.

Tru Blu- The thing with driving after any surgery is your mom simply needs to be off any narcotics and have the ability to slam on the brakes if need be. I had both breasts removed. It's hard to explain, but for me, I had a lot of numbness, which actually helped me not feel as much pain as I anticipated. She will probably have nerve pain at some point, all those nerves that were severed try to "refire", and I felt like I had a steel band around my chest. Eventually the nerve pain went away and the tightening lessened. The other thing I did was arm exercises, I was given instructions, but I'm sure you can find this online. It makes a big difference in regaining range of motion after this surgery.

Laurie- Call me on the 28th and we can meet up around World Showcase for F&W treats. We fly home at 6:18 that night, so we will only be in the park until late afternoon.

 

[MoniqueU]

snappy, thanks for all the words of wisdom. A surgeon didn't order the test, my dr's office called so the report must of been sent over there and someone decided, i don't know who. it was a little over a week from my last mammo.

Do you think they would let my husband come in there with me? This is just a radiiology center, not a breast center and they are all business.

Laurabelle, the procedure is set for the 17th. Longer then I would of liked. We have a huge shortage of facilities where I live and getting appts is hard. It has been over 2 months since my first mammo.

I don't know about the pea thing. My mom lives with us and I do NOT want her to know about this until there is really cause for concern. She will be sent over the deep end for sure and I wan't to avoid that and the so called drama that would come with it. She is WONDERFUL but tends to overreact when it comes to me. (what mom wouldn't)

I am glad to know my fatigue is somewhat normal. I have also sort of tuned out everything and everyone but my family. The trivial stuff on message boards and tv etc just seems so silly to me right now.

Thanks again and I will update.

I am thiimking of all of you as I have through the years.

 

[snappy]

I am not sure about letting your husband in the room. Mine was outside but we did not request for him to be in.
My recollection is that there were at least 6 people in the room, one radiologist and lots of nurses. It was not that big of a room, so I am not sure if it is a space thing or more just that the medical people want to be able to speak freely. There was alot of discussion during mine, and it took a while because I had multiple areas to test. Also, one area was close to the skin and this location makes it difficult to get the sample correctly with the equipment they use. This required extra effort, and there was much conversation about the process that I was aware of but could not actually hear due to the lovely calm music.

If I were you, tell 'em Laurie in Louisiana told you to ask about warmed blankets. It is cold in those procedure rooms, and I swear the comfort from those blankets and that kind nurse rubbing my shoulder (maybe you can ask for that too) are the things I remember vividly.

When I had my reconstruction later I ask for and received all the warm blankets I could use.

I was so impressed by the blanket thing, that I asked the technician who did my bone scan about them. He told me the origin of them: one of this hospital's executives was treated with lymphoma at a major cancer treatment center where warmed blankets were used, and he brought the idea back to use in his hospital. I don't know his name but he is legendary in my book.

Sorry you have to wait so long for the test. Waiting is torture, we know that. Come back and visit with us here, and we will help you get through it.

I understand about focusing on your family and shutting out distractions. Maybe us veterans can help you, let us try.

I also understand about shielding your mom from the news since she is a survivor. I will tell you it may be difficult, especially with her living with you. Our youngest duaghter was 8 at the time and I did not want to worry her. But she overheard me talking on the phone after I got my results from the biopsy. I also think she sensed I was acting strange. I think the biopsy was done one maybe two days after her first communion. I just did not want to ruin the occasion but it was difficult holding this back, especially since my other family members knew.

Good luck to you. Ask for a copy of that biopsy pathology report.

 

[snappy]

~~~***GAGWTA sistas***~~~

Laurie- Call me on the 28th and we can meet up around World Showcase for F&W treats. We fly home at 6:18 that night, so we will only be in the park until late afternoon.

Awesome, even if we just have a few minutes for a hug and maybe some French pastries? I think there will be a Napoleon with my name on it.

We are staying at the Dolphin this time. Good for you for trying the boardwalk. Have you stayed ther beofre? I hope you get one of their renovated rooms, although honestly, the view means more to me. I am hoping for a nice view at the Dolphin but probabaly won't be gifted for one since I booked standard (I am cheap). I did join starwoods again, already a corporate member but never used it so I will be brining both SPG numbers. All I know is I am asking for an upper floor.

Send me a pm with your cell again, I am sure I have it in my library of pms.

Strange night last night, I will post later when I know more. DH and I lost so much sleep and are so jumpy that this morning when DD13 was picked up by the school bus and neither of us saw her actually get on the bus, he decided to race over to the last stop in the neighborhood. She meantime answered our calls to her cell.I would say we are gunshy.

I am thankful she has her cell phone. I never liked her bringing it to school but I have changed my mind.

And I need to get back on here with details about the ongoing drama saga at work but it is too laong and drawn out for my nerves this morning and anyway it is still unfolding.

 

[MoniqueU]

Snappy, did you also have 2 mammos before your biopsy?

 

[snappy]

Snappy, did you also have 2 mammos before your biopsy?

Yep, first the screening one, then a letter a week later to go in for the diagnostic. I originally had to wait a week or two for Mammogram #2, but I called and was put on standby so I got it quicker. Before I left the radioligst saw me and recommended the biopsy, the one you are getting. It really is considered a non-invasive biopsy.

The results from the second mammogram was sent to my gyn doc at the time, and he referred me to a surgeon. I brought all the films form those two mammograms as well as past ones for historical purposes to the surgeon.

It seemed to me that although he looked at the films, it was already decided I needed a biopsy strictly from the fact that the diagnostic one was a birads 4 level.

It must be the standard of care to have a biopsy with that time of mammogram result.

My mammogram showed DCIS in two areas. It appeared asclustered calcifications that are small in size and irregular in shape. All women have them, but they are only of concern when they appear clustered and irregular. The biopsy targeted two areas in the upper outer and behind the areola. Both areas had DCIS, which is non-invasive, the "best" kind of cancer to get as it has not escaped the ducts yet so is unlikely to have spread elsewhere. I did have one very small (.1cm which equates to only 1 mm) area of invasive cancer.

The path report after the mastectomy showed other areas of DCIS but no other invasive cancer and about 30 lymph nodes were removed and showed no evidence of disease either.

So I got good news all around and no chemo was required. No radiation either as I had a "very wide incision". It was a modified radical but the surgeon was as thorough as you could get as I was left with a concave shape. The surgeon is known for his diagonal scars, honestly I was amazed at how little pain was involved. I think his technique, although dramatic, was conducive to healing and wearing bras after surgery. Also, I think the widespread areas of DCIS were a factor in the dramatic concave result, and perhaps the closeness of some ares to the skin surface. I had very little skin left, but my tummy skin looks very lovely in its new home.

The breast surgeon's office set up the stereotactic needle biopsy soon after the visit. He got the results and called me the day after the test at home.

My sister had a much larger area of concern so she had to do the surgical biopsy and more tissue was removed. The surgeon was concerned especially since I had just been diagnosed, but she had benign results. I look at it as proof that mammograms are only tools.

The biopsy is what is used for diagnosis.

Did the radiologist call you in for a consult before you left from the diagnostic mammogram?

New breast from tummy skin=no stretch marks but very fine hair. Sometimes having low vision is a boon!

With my presto chango free tram reconstruction I feel I am better than ever. My plastic said the patients that are the most pleased with their results are often the ones that waited for reconstruction and realized the blessings of a not so perfect breast over being living with the lopsided scenario.

I have never for a milli second regreted reconstruction.

Please feel free to aks questions, pm me, etc. I do so go on and on but I sure feel your pain and am very eager to help in any way I can.

 

[Pea-n-Me]

Monique, you've gotten good advice. Hang in there.

 

[Sha]

Snappy... when do you arrive??? Who is with you for this trip?

 

[luvmarypoppins]

Good afternoon ladies

MoniqueU- Wishing you all the best. The ladies are great here, very full of information and encouragement. Its good to focus on your family.

TruBlu - Wishing your mom all the best too. She is so blessed to have you in her life.

Melissa - That was a sweet story that you shared. It touched my heart

Alice - Your dream was scary, How are you feeling? Don't we have great weather??? I am lovin it!! Will you know the biopsy report next week?

Laura - I hope you have a great trip. Wow, I didnt know you had to have another operation. You are one tough sista!!

Laurie - You are amazing too. Share your stories when you get a chance.

Sha - I am glad you are around. How is Miss Lee? Any updates?

Well I have been crying way too much today. I don't know why. Ds school called and since he is in the honor society they asked him to orient the new kids to the school on tues. I hung up, went in my room and cried. I thought, wow I am here to see this, like 7 months ago I was almost dead etc. Little things just get to me lately. Ds 19 says I am way too emotional, of course in his infinite world I am. Today at physical therapy I met the other therapist, um, lets just say he is too laid back for me. The session is suppose to be 1 hour. I did tell him I didnt feel well, (I didnt say it was my stomach, not my shoulder)). He says, oh lets call it a day then. Um, (thinking to myself) NOT, I paid for 1 hour and I am getting 1 hour etc. He also didnt seem to massage my shoulder as well as the other guy did. I will give him 1 more chance next friday, then I am switching days. I dont want to bad nouth the 1 partner to the other, but its just the way I saw it. He didnt even talk to one lady there. But today there were a few more younger people than on tues. morning. I took a percocet last night, I was just too cranky and my stomach, shoulder and neck and back hurt. Happy sleep for me. I can see why those things could become addicting. I am very careful. I treat them like gold. Looking forward to the surgeon visit on tues. (Oh and I endured driving with ds17 to work, his comment - I am a great driver- mom thinking to herself - yeah and thats why I feel like I am going to have a heart attack right now

GTAGWTA, Thinking of you all.

 

[Sha]

Thanks LMP... I'm trying... on call this weekend with one possible admission on Monday it seems.

Miss Lee update. She came home from the hospital on Tuesday. I dont have any reports yet, just that she is getting a blood thinner injection to her stomach and will return for chemo in a month or so. She told mom that she needed me there. Wish I could go......

 

[Sha]

Can we have an online teaparty tomorrow afternoon??? Beverage of choice... Im having tea... and whatever else.... maybe around 330pm EST????

 

[Candy30]

Wow! So much to catch up on!

Welcome Monique! You came to the right place!

Trublue- I hope for a fast recovery for Mom

GAGTWA to everyone!

ShaI won't be able to join in the tea party. I have to go to work at 2PM. I am so mad at that. I really would love to meet everyone here!

Snappy. I will miss you by 3 days at Disney. Bummer.

Well work......one of my managers was let go.. Shocker for all of us. So that means that only myself and 2 other managers are there to run the department for this huge hospital. We really don't know our futures. I emailed a guy in the legal department who is handling the take over and asked could someone tell us what is going on. Not in those words but that's the jist. I hope to find something out by Tuesday. Still planning for the trip and kids and hubby are finally getting into it At least I have that to look forward to.

 

[snappy]

Sha, I think I am going with DH. The vacation is approved by my employer and his, but he has been told he may have get there late or leave early.

Big doings. I can't comment except to say it is extremely unwise to make yourself indispensable. We had had lots of discussions about it but he cannot do anything about it at the moment,

And that is all I have to say about that.

Sha, is there a chance you might make it? I was originally planning to compbine F&W with the RFTC but when they rescheduled the walk till late October, I bailed.

Are you planning to do the walk still? Will you be in Orlando Sept 24-30? I would love to meet up, whether DH is there or not. You met him last year, he is nothing if not flexible.

Not only are we not on a schedule, we only have 2 ADR's. We mostly plan to visit kiosks. We like winging it, we actually do it even with the full crew as I really abhor ADR's with the exception of Cali Grill, and even that one we have on the spur of the moment a couple of times right when they open or the day of.

I like the tea party, I think that may work. So you mean to just be on reading and posting on the thread at the time, I assume no political mumbo jumbo gumbo?

Can we talk Disney instead? I would love to just pick everyone's brain for new stuff to do and see there?

Candy, I hate that we just miss you. The attraction for DH is F&W. That is how I convinced him to go after we were there for Memorial Day.

Maryann, I am sorry you are emotional. It is good to let it out though. I think you are generous to give the second PT guy another chance. He does not sound like he has a very good bedside manner.

I want everyone to have a good weekend.

 

[jackskellingtonsgirl]

GAGWTA, Ladies!

Candy, your trip is getting so close!!

Laurie & Laura - Yay for your trips, too!

Alice, I hope your recovery is progressing well!

Good thoughts for everyone having tests and procedures!!

 

[Sha]

Sha, I think I am going with DH. The vacation is approved by my employer and his, but he has been told he may have get there late or leave early.

Big doings. I can't comment except to say it is extremely unwise to make yourself indispensable. We had had lots of discussions about it but he cannot do anything about it at the moment,

And that is all I have to say about that.

Sha, is there a chance you might make it? I was originally planning to compbine F&W with the RFTC but when they rescheduled the walk till late October, I bailed.

Are you planning to do the walk still? Will you be in Orlando Sept 24-30? I would love to meet up, whether DH is there or not. You met him last year, he is nothing if not flexible.

Not only are we not on a schedule, we only have 2 ADR's. We mostly plan to visit kiosks. We like winging it, we actually do it even with the full crew as I really abhor ADR's with the exception of Cali Grill, and even that one we have on the spur of the moment a couple of times right when they open or the day of.

I like the tea party, I think that may work. So you mean to just be on reading and posting on the thread at the time, I assume no political mumbo jumbo gumbo?

Can we talk Disney instead? I would love to just pick everyone's brain for new stuff to do and see there?

Candy, I hate that we just miss you. The attraction for DH is F&W. That is how I convinced him to go after we were there for Memorial Day.

Maryann, I am sorry you are emotional. It is good to let it out though. I think you are generous to give the second PT guy another chance. He does not sound like he has a very good bedside manner.

I want everyone to have a good weekend.

Yes... just posting here with tea or whatever beverage one wants.. and we can definitely talk Disney. I am at WDW th 24th-27th. Friday I am free all day and part of Saturday. I am staying at POFQ and going to the AC on Thursday night. Definitely want to meet up again. Food and Wine starts on Friday I believe and I have no plans or expectations... am taking my time and just relaxing. Was hoping that someone was joining me, but that cant happen right now. So another friend is coming to the AC and then goes back to work the next day.

 

[snappy]

Yes... just posting here with tea or whatever beverage one wants.. and we can definitely talk Disney. I am at WDW th 24th-27th. Friday I am free all day and part of Saturday. I am staying at POFQ and going to the AC on Thursday night. Definitely want to meet up again. Food and Wine starts on Friday I believe and I have no plans or expectations... am taking my time and just relaxing. Was hoping that someone was joining me, but that cant happen right now. So another friend is coming to the AC and then goes back to work the next day.

We are in a studio at ALV for one night then 5 nights at the Dolphin.

Should we shoot for a quick meet up with Laura in the morning Saturday. What time are you Free on Saturday?

Friday we will be relocating to Dolphin, grabbinga car rental, and walking around the countries no doubt.

Friday night is another possibilitity.

So your mom is not coming?