Dis Breast Cancer Survivors Part III - GAGWTA!

[lookingforward]

Good morning, all!

Sorry I haven't been on here much lately. I guess the rads are starting to catch up with me. Just finished up with week 4 - hooray! I also started swimming again last weekend. I am up to 45 minutes a day and that is contributing to my fatigue, I'm sure. I also have more burns now than I did before. The nurse says it's a cumulative thing. DS has no school today and he's driving me crazy. I can't get him to do anything around the house because he says he's tired from being in Boca Raton all day yesterday for Chorus States. His school received straight 1's so they were excited about it.

LMP - I love how you are sharing your "stash" with DH. I hope his travel plans aren't interrupted for too long because of the volcanic ash.

Jacksgirl - We have had several good servers at Yachtsman. We haven't been there in about a year. Their prices are so high now that we prefer to go to Charley's Steakhouse on 192 in Kissimmee.

Yea to your son!! Hang in there with the rads, I used a prescribed cream that really helped. Small world that your son is in Boca for the states. Thats where I live!! Hang in there

 

[luvmarypoppins]

Fl Lisa - Hooray for your son and I hope the rads arent too bad. Did they give you a special cream. I know my aunt had it and so did one of my friends. I am jealous of your swimming!!

Elizabeth - we also had Ricardo as our server at the Yachtsman.

Nota - I know you wanted to meet up too. How are your chemos going?

Oh and just when we dont think it could get any worse...yes Frankfurt is closed, so dh came storming home, saying they booked him on Aeroflot straight through to Moscow. He took 2 percocet, took a sitz bath and held up the limo guy for a while. He came home as he forgot 2 of his meds. He was suppose to meet the german guy in germany so now I dont know what is happening, gotta love the volcano

Oh and ds198 lost his ride to the prom, so ds20 is taking him later. He is then staying overnight at some other boys house and will get a rid home tomm. Ds 20 did this also. The girls sleep at one girls house and the boys one boys etc. He is picking up the white rose corsage for his date now with ds20.

It should be an interesting week end for sure.GTAGWTA

 

[Sha]

here is one of the tiger pics I was telling you all about... working on some now. May not get them all done tonight though. Disney tomorrow after a photo class.

 

[jackskellingtonsgirl]

Maryann, Pixie and Princess are doing well, thanks! Pixie will be 7 mos. next week. She is growing up fast! She is a very happy baby. And not a tooth in her mouth. She has the biggest pink grin. She is adorable. Princess had a little classmate over to play yesterday and I gave them pretzel sticks and juice for a snack. Princess said "You NEVER let me have juice!!" Which is true. I NEVER allow her to have juice. But her little friend was just too cute so I thought I would let them have a treat. I want the well behaved little friends to want to be invited back.
Did you like Ricardo? He is always so nice to us.
I hope your DH's travels are not delayed too much more!

Sha, I swear I have NEVER seen those darn tigers. NEVER. I have seen those tigers less often than Princess is allowed to have juice. Your photos are always just fabulous. Maybe the tigers will show themselves in June.

FLLisa, hang in there with the rads! Congrats to your DS on his "superior" ranking! Our middle school band has been getting "2" at competitions this year. Not sure if they are using more difficult music or if they have gotten worse instead of better.

Maureen, I know you miss your mom. I am sure she is watching over your family and that she is so very proud of Danielle! But it's not the same as having her with you.

 

[minijeanie]

NEWBIE TO THESE BOARDS

just had a bilateral masectomy last week...2 months ago was told I had DCIS and lumpectomy on left side only...Day before my surgery I went for 2nd opinion and low and behold ... actually had 2 different types of cancer. left side triple negative..right side lobular cancer...did the masectomy because of all heavy breast cancer in my family..
Question??? docs want to do chemo because of the triple negative side. I want to know if anyone out there refused chemo and why?

I am so on the fence here.. If there is no more cancer in my body why do I have to put this poison in me? It boggles my mind...

Wanting to see other people's experiences and what they have done.

thanks...

 

[Pea-n-Me]

here is one of the tiger pics I was telling you all about... working on some now. May not get them all done tonight though. Disney tomorrow after a photo class.

OMG Fantastic job! I hope you had a great trip.

 

[Pea-n-Me]

NEWBIE TO THESE BOARDS

just had a bilateral masectomy last week...2 months ago was told I had DCIS and lumpectomy on left side only...Day before my surgery I went for 2nd opinion and low and behold ... actually had 2 different types of cancer. left side triple negative..right side lobular cancer...did the masectomy because of all heavy breast cancer in my family..
Question??? docs want to do chemo because of the triple negative side. I want to know if anyone out there refused chemo and why?

I am so on the fence here.. If there is no more cancer in my body why do I have to put this poison in me? It boggles my mind...

Wanting to see other people's experiences and what they have done.

thanks...

Welcome minijeanie. I had triple negative, too, and wound up having three types of chemo. (I don't know what your node status was, but mine was positive.) I, personally, would not have refused chemo (but it's a very individual decision). My oncologist and I agreed that the time to fight was then, and I didn't want to have any regrets should I have a recurrence or develop a metastasis. I wanted to be as aggressive as possible, and we were.

I posted this on another thread earlier today. I'll post it here, too.

Obviously this a very agressive cancer considering it came back even though I had no breast tissue and it came back on the other side of my body.

The hard part about invasive breast cancer is that it does its damage before it's even found, ie traveling throughout the body via the lymph system and depositing some cells in places they don't belong. I was devastated when they explained to me that the type of surgery I chose wouldn't affect my long term survival, because my initial thought was to remove both breasts and call it a day. Heck, I had children to raise. But unfortunately, as you've found out, it's not that simple. I wish it was.

Chemo is designed to kill the cells that may have gotten away before your cancer was found. That's why it's necessary for the chemo to travel throughout your whole body. Recurrences can occur in your bones, brain and major organs, and unfortunately, that's what people who die of the disease die from. Triple negative has a high rate of recurrence in the first two years, but the good news is it responds really well to chemo. It can still come back later though, too, both in your breast tissue and distally, which is what really sucks about this disease. Make sure you discuss these issues thoroughly with your surgeon and your oncologist before you make your final decision.

The most widely publicized case I recall about a woman with invasive breast cancer declining chemotherapy was Suzanne Somers. If you google her story, you can read about it. She's still doing well many years later. I guess the way I always thought about it was that I didn't want to have regrets.

Good luck with your decision making process, and hope I didn't scare you. I just think that knowledge is power and we all need to know the cold hard truth when making decisions that can affect our outcome in the long run.

 

[snappy]

Good post, Linda.

Minijeanie, from what I have read, when breast cancer is found, the tumor or tumors have usually been growing for a long time. That is why I would be concerned about refusing chemo, since there was a long period of time during which a cell or two could have escaped and moved to another location. As Linda said though it is a very personal decision, just as reconstruction is, or even doing a lumpectomy vs. mastectomy.

Another factor in all of this is the size of the invasive component. My invasive component was very small, only 1 mm in size., amongst a number of very large areas of DCIS. The studies showed that I was not a good candidate for chemo, but I had a very wide incision and although it was certainly disfiguring, the surgeon removed any
possible area of the breast so there was no possible DCIS left in place.

It had the effect of also leaving very little skin so the only reconstruction option was a free tram flap, which I did over 2 years later. I think it was a good choice in retrospect.

You should ask your doctors about the studies of survival rates from different treatment options. It is a personal decision but you should have all the information possible to make an informed decision.

Glad you posted here. If you have more questions, this is a good place. Also a good place for support, so please don't be a stranger.

 

[luvmarypoppins]

Good morning ladies

minijeanie - See you are a Jersey Girl, I grew up in Middlesex County by Rutgers. The ladies here are a great bunch and a wealth of information and support. I dont have breast cancer but a very rare and agressive form of thyroid cancer so I cant help much as mine only responds to ingestable radiation and boy did I get bombed with it, but I am fine for now. I wish you all the best and that you will get the best treatment possible. I am sure all of this is scary, confusing, overwhelming etc. right now. Get as much information as you can to make the best decision for you.

I know what you mean about the "no regrets" Linda. I wanted to fight tough, strong and hard so that is what we are doing.

Sha - I love your tiger pictures. I cant believe we can even see the details of the paw!!

Guess who called me from SIBERIA yesterday..yup none other than dh. Hmm, it seems thanks to the volcano that Delta/Aeroflot "STUCK" it to my dh and demanded he pay for the only seat left on the flight out of NY which costed him over $4,200 which he put on our visa. He got it approved from travel over the phone. It will take months to get this back and they said they will neogotiate with delata for a lower rate or pay us in full. I am not happy to say the least. Dh loved lst classs and got the lst seat so he could really stretch his legs out, good for his post op stuff etc. He is doing good pain wise he said and was sleeping and then going to the opera. In Siberia they lost his room but found it, he cant find the german guy and the russians were taking him to the opera. They told him at the hotel the phone would never work but it did, amazing.

Its freezing cold here. Ds18 said he had a great time at the prom. I saw one picture of his date so far and she looked beautiful and cute as always.

Gotta go wake up the bunch for church. GTAGWTA. Have a great day everyone.

 

[Pea-n-Me]

there was a long period of time during which a cell or two could have escaped and moved to another location.

I agree, but it's more than a cell or two. These little devils are microscopic and there can actually be a good number of them. If you have cancer in your lymph node, it moved from your tumor to there, and grew. That takes a good amount, I'd guess. Too bad there wasn't a way of tracking exactly how many escaped (I'd never actually thought of it, but presumed there were many in order to make two of my nodes have cancer in them). But even if nodes are negative, the nature of invasive cancer is that it leaves it's orginal tissue area and spreads out. A pathologist actually sees and interprets this on biopsy tissue. So just by nature of being invasive, some cells are "free floating" out there. The biopsy process itself releases some, too (I had 8 needle core spots, IIR).

 

[snappy]

I had forgotten about the biopsy. You don't want to know how many spots I had with that needle. They struggled as one area was right under the aureola and another right below the skin. It was quite the challenge to get the samples, the needle just wasn't designed to go in that shallow.

Oh well, you gotta look forward, not back.

LMP, glad your son had fun at the prom, and that your DH arrived and is not in a lot of pain. I hope you do well during his absence.

The tiger picture is mesmerizing. They looked like they were posing. I don't remember seeing them in that position. You must hav an amazing zoom on your camera, Sha!

 

[Pea-n-Me]

Please, I hope some others here offer their advice to minijeanie, even if it's different from mine.

 

[wdw4us2]

minijeanie - Welcome to our thread. I had bi-lateral mastectomy last August. I am currently undergoing radiation treatment after completing chemo the end of January. Since you just had your surgery last week, I am assuming you have not received your final pathology report. I know my surgeon did not get mine until a few weeks after the operation.

The decision to do chemo is your, but as others I have said, I sought the most aggressive treatment possible to avoid a recurrence. I would rather go through it all at once instead of having a few good months and then starting again. I would definitely see what your oncologist says before you make a final decision.

Pea-n-Me - I agree with what you said.

Sha - Love the tiger pic!

lookingforward - I didn't realize you were from Boca. I'm about 90 minutes north of you. DS said he had a good time at States. They went to a Mall near St. Andrews for dinner. I haven't been to Boca in years.

LMP - Glad to hear your DS had a good time at Prom. I can't believe what your DH had to pay for his airfare!

Laurie - Your biopsy sounded painful. I completely agree with you about looking forward.

Nothing much new here. DS just left to go bowling with his church youth group. DD is at Universal. It's free tonight for UCF students. She keeps texting me pictures. I'm jealous! DH is working, yet again. I think I have finally convinced him that he needs to stop working seven days a week. He's finally realizing he's not as young as he used to be. I know he's worried about the medical bills that the insurance is not covering, but I told him his health was more important.

I've been meaning to ask everyone - how did you deal with the hot flashes? They're driving me crazy at night! Not too bad during the day - I think swimming in the cold pool has taken care of that.

 

[snappy]

Not painful as I remember, I was too scared to notice. They deaden everything pretty good during those stereotactic core needle biopsies. It was more like alarming when I listened in to the discussion while they were doing it, and I realized I was a problem child. I think I got the deluxe biopsy.

The radiologist just sorta said when it was over, we achieved what we intended. I really had no clue what he meant, although looking back I guess he was apologizing that it took so many in and outs.

In a way I have felt thankful that I still have chemo in my future arsenal since I did not have it in 2004. At some level I have the feeling I will need it at some future time and I want to hit cancer hard if it comes back.

Hot flashes. . . yes I had them. They were part of the reason I wanted to do reconstruction as the big blob of silicone made me sweat like a pig in our hot humid summers. I work a lot of thin woven shirts that breathed. I gave up all kinds of knit material on the top, even cotton, knits seemed to capture the heat. My DH came home with some Columbia fishing shirts that were vented during our first trip to Disney after cancer.

They really helped. I have a number of them now. They come in some pretty nice colors, although I realize they are not very becoming as they are so loose (they don't show off "the girls" to their true advantage. Those pockets sure come in handy though, especially in WDW, for sunglasses, cell phones, meds, etc.

I have used the scarves that you soak in water too. I used a hand held fan on and off.

I am very picky about what a wear to sleep in. I like sleeveless, woven cotton nightgowns. I found some that have a bit of lace. I wear these even in the winter and I don't put the heat on much.

I tend to freeze everyone out.

I would love a nice cool pool to jump in. Who needs heated?

 

[luvmarypoppins]

O.K. with dh gone I definetely have too much time on my hands.

Well ds20 gave us a little unwanted surprise. Ds22 and I were going to church in the van. When we go out it smells horrid, like smoke. We see air freshener and febreeze bottles in the van. I freak out as it stinks so bad. I knew ds20 used the van yest. to pick up ds18 post prom.

I question him at church. That seemd good as he coulldnt give me an attitude there. He says it was his cigarettes. I cant believe that is true since he has asthma. He would be so sick etc. and he knows his friends arent allowed in his car or the van since his little deer incident. I gave him to choice of giving me his phone now or waiting if he refused for dh to come home and I would have it turned off for a minimum of 30 days. I so do not need this junk from ds. He chose to give it to me now. I am debating how long to keep it off. Guess the 9 days before have taught him nothing. The other 2 are not like this at all.

In the meantime the lady at church asked ds18 to teach a vacation bible school class. He said my mom wants to teach too. Also he didnt know my former partner came up to me and asked me to help her one day that week with her new partner. I said I would think about it. I didnt want to say that 2 is company and 3 is a crowd. I also felt like she wants to be nice but doesnt know exactly how etc . She even came to see me in the hosp.

So ds and I talked. We will team teach a class. Yeah. I have to call the girl tomm. I dont know what age they will give us, anywhere for k-4th. I would rather have 3 or 4 but doublt we will get that. I also have the decorating ideas and he does them too. Last year I made posters for the room etc. The theme is country ranch, hmm, thinking of elizabeth, where is my texas stuff?? Maybe I have some in the garage. Ds is a natural with being the kids party host at work. Kids love him etc. This will be fun. I think its July 12-16 and that is my sis birthday so it will help me to focus on something else instead of being sad etc.

Laurie - did you make any good adrs? I know you mentioned cali grill.

 

[lookingforward]

minijeanie - Welcome to our thread. I had bi-lateral mastectomy last August. I am currently undergoing radiation treatment after completing chemo the end of January. Since you just had your surgery last week, I am assuming you have not received your final pathology report. I know my surgeon did not get mine until a few weeks after the operation.

The decision to do chemo is your, but as others I have said, I sought the most aggressive treatment possible to avoid a recurrence. I would rather go through it all at once instead of having a few good months and then starting again. I would definitely see what your oncologist says before you make a final decision.

Pea-n-Me - I agree with what you said.

Sha - Love the tiger pic!

lookingforward - I didn't realize you were from Boca. I'm about 90 minutes north of you. DS said he had a good time at States. They went to a Mall near St. Andrews for dinner. I haven't been to Boca in years.

LMP - Glad to hear your DS had a good time at Prom. I can't believe what your DH had to pay for his airfare!

Laurie - Your biopsy sounded painful. I completely agree with you about looking forward.

Nothing much new here. DS just left to go bowling with his church youth group. DD is at Universal. It's free tonight for UCF students. She keeps texting me pictures. I'm jealous! DH is working, yet again. I think I have finally convinced him that he needs to stop working seven days a week. He's finally realizing he's not as young as he used to be. I know he's worried about the medical bills that the insurance is not covering, but I told him his health was more important.

I've been meaning to ask everyone - how did you deal with the hot flashes? They're driving me crazy at night! Not too bad during the day - I think swimming in the cold pool has taken care of that.

I live about two minutes from the mall! Glad he had fun here! Its a great mall, by the way! Neiman Marcus, Macys, Bloomingdales, Nordstroms! Love it there!

 

[KJ Luvs Pluto]

minijeanie - As others have said, I too decided to throw everything I could at my cancer so that I wouldn't have to wonder later if I had done enough, especially if it comes back. I had a mastectomy on the left side for invasive cancer. I had four tumors, one which was almost laying on the chest wall. So the chemo and radiation were very important to, hopefully, kill any cancer cells that the surgeon was unable to remove, or even see.

Everyone is different though so you need to decide for yourself what your acceptable risk will be. When you make the decision that you are happy and satisfied with, don't let anyone make you feel bad for that decision though. There's always someone out there with the "Well, if I was in your place I would have done ....." You do what's best for you. We're all here to offer advice, if asked, and whenever.

 

[NHAnn]

Uggh, just lost another long post...SO frustrated with the DIS these days.

Long lost GAGWTA girl checking in!

Been having some issues/treatment related to 9 years of estrogen deficiency...hyst in 2001, E+ cancer in 2005, 4 yrs of aromatase inhibitor...
anyway...saw a really wonderful female urologist to rule out some other stuff after bouts of UTI like illnesses that weren't UTIs...and now I am doing pelvic floor PT (who knew there was such a thing!) a low dose overactive bladder med, and considering a topical estradiol cream which I was surprised to learn that my oncologist is not averse to. Tough balances quality of life issues, coming up on 5 years cancerversary, sometimes I just wanna stick my head in the sand and not deal with it at all!

Sha---I LOVE the tiger pic...I always have to see the tigers at AK...DH has to see the gorillas, he can watch them for hours!

Minijeanie- welcome I am a DCIS/lumpectomy/radiation/hormonal therapy person...no chemo. Like snappy, it's nice to know it's available in the future should I need it. I think the thing that is really difficult about the spot you are in currently, is that there are decisions to be made, and they are yours to make. I think we all assume if we get cancer we will rely on the docs to tell us what we should do to beat it. I think now even more than even 5 years ago, there are so many choices. And the docs can give you options and even recommendations, and you can seek second opinions, but in the end you make the decision you feel is best for you with the info you have and your unique circumstances....and you move forward, and don't look back. Wishing you clarity and strength, and please visit us often!

Thinking of you all!!!

 

[minijeanie]

thank you to all who have written. I read each and every post 2x... I am going to oncologist on May 5th. I did get my pathology report. 27 nodes taken on the left side and one was cancer. Right side nodes were fine. Will probably get tamoxifen pill for right side and left side (SIGH) ...So do not want to do chemo.. Not to be a debbie downer but life for me the past 2 years ...well let's say it has kinda been a dark cloud...
my DD decided to have a baby at 19...she is back home now,,working and going to school ..but i am a major caretaker of her darling daughter who is now 8 months old.
I lost my husband last year to a horrible disease. He was only sick for 6 weeks. It was more than I could take.. My son went to college this past September...so I went to 4 people in the house.. living a normal life, losing my daughter, losing my husband, losing my son and then having my daughter and grandaughter move back in.

Right now the baby is staying with relatives when my daughter is at her job. I cannot lift for 6 weeks since the masectomy and cannot care for her. It has been very difficult and having chemo will just throw another wrench into my life. I really feel like I don't think I can take much more.
I was just wondering what statistics were for women who chose not to have the chemo. My calicification deposits on left side were small as were the small spots on my right side. I guess I question if there is no cancer in me why do you need to have chemo.. Can anyone really prove you still have cancer cells after they take out the tumors/deposits?
My family is grief stricken with breast cancer. My mom and both my two sisters have had it. I watched my sister with "chemo brain" . It took her over a year to come back..

Anyhow thanks for listening to my story....I am happy to be here and would love to take the journey with you.

another question??? when do you feel better after a masectomy? I am going on 12 days and my underarms are still killing me...and I get shooting pains in breast area... Did anyone else have/feel this?

sorry this is so long.....

 

[Pea-n-Me]

Minijeanie, my heart aches for you. I can certainly understand why the prospect of chemo seems overwhelming to you.

I guess I question if there is no cancer in me why do you need to have chemo.. Can anyone really prove you still have cancer cells after they take out the tumors/deposits?

The fact that one of your nodes was positive means that your cancer spread from the tumor site in your breast all the way over to your underarm. The way it got there was through the blood and lymphatic system. Once it's in there, it can go anywhere. Aside from the "smoking gun" of your node being positive, nothing much usually shows up on testing elsewhere in your body right now. I remember my oncologist predicting they wouldn't find anything. It's down the road that it can show up after lying dormant for a while. That's really what chemo's designed to treat. You can ask your doctors what exact statistics are in your case with and without the chemo. (What do your sisters say?) If your mother and sisters have had the disease, they might approach you about genetic testing as well. It would probably be beneficial to you to know if you carry the gene.

One other thing I wanted to mention

Will probably get tamoxifen pill for right side and left side (SIGH)

I would imagine this would be a fairly complicated decision on the part of your oncologist. I would definitely ask about it. I mentioned above I am triple negative also. My understanding that taking tamoxifen can actually make it worse. We had a poster here a while back whose pathology report was misread and she took tamox when she was actually triple neg and wound up having at least two back to back recurrences until they finally figured it out. I might even get a second opinion to make sure you're on the right path since your case seems to be so unusual.

You hang in there. Keeping you in my prayers.