Dis Breast Cancer Survivors - GAGWTA!

[Mom2Ashli]

Send me good vibes tomorrow - 10:30 am is my first radiation treatment! thanks and hugs and best wishes to all...

Sending Prayers and Pixie Dust your way this morning. And a great big hug. You can beat this, I know you can.

 

[Pea-n-Me]

Side question: I'm 30 and have never had a mammogram. Would you guys recommend my getting one since all of this is going on? The doctor told my 33 year old cousin to go right away for a baseline.

Personally, I think at some point you should get a baseline mammogram but I don't know that you need to have it done immediately. Sometimes even with baseline mamms they find things and you have to go through a very stressful process of additional testing, doctor's visits and sometimes biopsies. Can you imagine adding that mix to the stress of your life right now? However, if it's going to worry you not to have it done right now then you could, or you could have a clinical (breast) exam done to be sure nothing is out of the ordinary.

On my baseline mamm they found an oval spot which they recommended watching for 6 months. I elected to see a surgeon and asked him what he would recommend if I were his wife and he said biopsy. So we did and it was a benign fibroadenoma. But I'll never forget the fear that washed over me that day when they came out into the waiting room where I was with DH and our kids, and said the doctor wants to get an ultrasound. I never expected that with my first.

My DH's brother had some medical problems last year known to run in families. I was right on the phone to our doctor who ordered testing and he was fine; their other brother did the same and he was fine, too - thankfully. It's wise to check these things out IMO.

 

[snappy]

DisneyDebbie, Godspeed to Becca on her trip.

CheshireVal, sorry about your Aunt's met. I have been praying for her and your family. I am not sure what to tell you about having a mammo yourself.
I probably would do it, for peace of mind, but like Pea-n-me said, you can get unclear results, especially in a woman as young as you are who probably has very dense breasts. If you decide to have it, be sure and try to have it done at a facility with digital mammogram equipment, it is supposed to be more accurate. Also, be sure to follow the instructions about not wearing deodorant the day you have it.

I tried to sleep using my aqua cool scarf last night. It was great when I first put it on before bed, but using it while lying down did not work. I guess it isn't intended for all the tossing and turning I do in bed trying to get comfortable. I had to take if off after a few minutes, it felt like the gel was coming out of the scarf and going down my neck. YUCK!!!! I am going to use it to keep cool on our next WDW trip though, just not to sleep with.

I wanted to share this with my fellow survivors (I found it in a book I checked out of our Cancer Services library):

Good morning, this is God
I will be handling all your problems today
I will not need your help. . . so, have a good day.

 

[laurabelle]

Thanks again everyone for your kind words.

My aunt had a PET scan done on Monday-- the results are mixed good/bad news. The spots on her lungs that showed up on her original CT scan are "cold," so they can't say for sure whether it's cancer or not (cancer usually shows up as a hot spot, apparently). They don't want to do a biopsy because they're afraid it will collapse her lung, which would delay her chemo.

They *did* find that the cancer has spread to her spine, but that apparently is a better scenario than the lungs. Though, she asked her doctor if he thought she had at least a year left and he said he didn't know. I can't imagine what it feels like to hear that news, but I guess that doctors can't make any guarantees on anything, no matter what the illness, so I'm hoping she doesn't get too discouraged.

Side question: I'm 30 and have never had a mammogram. Would you guys recommend my getting one since all of this is going on? The doctor told my 33 year old cousin to go right away for a baseline.

Val- I think a baseline is a good idea for you. As a young woman, your breast tissue is more dense than older women, and that can make it harder to read the mamm. I have never had a screening mammogram, which is what your's would be, so I don't know how different it will be. When I had my diagnostic mamm, they followed up with an ultrasound, since they knew something was there and it did show up on the mammogram, the ultrasound helped confirm that it was a solid mass and not a cyst. Another option for young women is a breast MRI. HTH

If your aunt's cancer has only spread to her bones, that's better news. I know people who have lived for many years with bone mets.

 

[Pea-n-Me]

Good morning, this is God
I will be handling all your problems today
I will not need your help. . . so, have a good day.

Love it!!

 

[MerryPoppins]

Good morning, this is God
I will be handling all your problems today
I will not need your help. . . so, have a good day.

I need to hang that on my wall.

Val, I agree that spreading to the bone sounds better than the lungs. Keep thinking positive. Having the doctor say I don't know may not mean he doesn't think she'll live a year. Doctors just hate to put timelines to things unless they really have a handle on where things are going. I'd talk to my doctor about whether or not you should have your mammogram now. If it would give you peace of mind, then I'd push for it.

Snappy, I dodged the radiation and the chemo since I had a mastectomy. Just taking Tamoxifen. I count myself among the lucky that we caught my cancer so early. I had lots of options.

 

[JoannaOhio]

I dodged the radiation and the chemo since I had a mastectomy. Just taking Tamoxifen. I count myself among the lucky that we caught my cancer so early. I had lots of options.

I also had a mastectomy, thinking that would be the end of it. Otherwise, I might have chosen lumpectomy and radiation. My reasoning at the time was that I would think I was still sick during the months of radiation, and with the mastectomy I would feel that I was "well" as soon as the surgery healed. Well, out of 21 lymph nodes that they took, one had a tiny bit of cancer, so they told me I should do chemo. I spent about 24 hours "kicking" myself, thinking that I had made the "wrong" choice.

I know that not everybody believes that we experience obstacles in our lives for a "reason" - but I do believe that my going through chemo - and talking and writing about it - was a very important process for me. I also did not have reconstructive surgery, and have walked through this world for the past 11 years as a one-breasted woman - no prosthesis or attempts to disguise the fact - though I normally wear loose fitting dresses that hang from the shoulders anyway, and my remaining breast is so saggy as to be almost invisible under my clothes. (I had stopped wearing a bra years before the surgery, and I wasn't about to start wearing one again, in order to hold a prosthesis.)

I am certainly not advocating that this would be the "right" choice for anyone else, but I definitely feel that it was "right" for me. If that tiny bit of cancer hadn't shown up in that one little lymph node, then I wouldn't have been put on chemo - and maybe another tiny bit of cancer would have escaped to recur somewhere else in my body. Eight months of chemo was definitely no picnic, but it left me feeling pretty darned secure that my body had been cleansed of all cancer cells.

 

[snappy]

I also had a mastectomy, thinking that would be the end of it. Otherwise, I might have chosen lumpectomy and radiation. My reasoning at the time was that I would think I was still sick during the months of radiation, and with the mastectomy I would feel that I was "well" as soon as the surgery healed. Well, out of 21 lymph nodes that they took, one had a tiny bit of cancer, so they told me I should do chemo. I spent about 24 hours "kicking" myself, thinking that I had made the "wrong" choice.

I know that not everybody believes that we experience obstacles in our lives for a "reason" - but I do believe that my going through chemo - and talking and writing about it - was a very important process for me. I also did not have reconstructive surgery, and have walked through this world for the past 11 years as a one-breasted woman - no prosthesis or attempts to disguise the fact - though I normally wear loose fitting dresses that hang from the shoulders anyway, and my remaining breast is so saggy as to be almost invisible under my clothes. (I had stopped wearing a bra years before the surgery, and I wasn't about to start wearing one again, in order to hold a prosthesis.)

I am certainly not advocating that this would be the "right" choice for anyone else, but I definitely feel that it was "right" for me. If that tiny bit of cancer hadn't shown up in that one little lymph node, then I wouldn't have been put on chemo - and maybe another tiny bit of cancer would have escaped to recur somewhere else in my body. Eight months of chemo was definitely no picnic, but it left me feeling pretty darned secure that my body had been cleansed of all cancer cells.

About the chemo question, I have to admit in my "dark moments" I do worry about not having it. You know, the worry about how thorough the pathologist was in looking at the 16 lymph nodes the surgeon removed. Also, was the pathology report from my earlier biopsy accurate insofar as the only invasive component was only .1 cm, way below the size where chemo is recommended (I think around 1 cm is the cutoff). It seems to me that it only takes one microscopic cell anywhere in the blood stream and eventrually you end up with a met, unless your body's immune defenses are able to fight it off.

I had my surgery right before Memorial Day. It took a long time to get the pathology report and I have had thoughts about whether all the "good pathologists" were on vacation that week. What I try to tell myself is that is has to be put in God's hands, that God guides the hands of the doctors.
Anyone else have these thoughts cross your mind?

 

[Tinkertude]

AAAAAAaaHHHHHHHHH I like this place. It feels very comfy!

 

[laurabelle]

AAAAAAaaHHHHHHHHH I like this place. It feels very comfy!

Me too!

It's so "normal" to second guess our treatment decisions, and there's always some new better treatment coming out (thank God!!!) I think above all else, as Joanna said, you have to do what feels right foryou using all the information you can gather at that time! I had a teeny, tiny tumor, that shouldn't have been palpable, besides at age 36, I was "too young" to get bc. And yet it was in 2 lymph nodes, go figure. My onc said it's acting agressive, so we need to treat it aggressively. I did 6 months of chemo that kicked my butt and opted for bilateral masts, plus hormonal therapy and 5 yrs of Tamoxifen. I'm a 6 1/2 yr survivor! What a gift each minute of it has been!

I started blogging about my cancer journey a year ago, I just couldn't do any writing at the time of treatment, and it has helped me tremendously, and others who have read it say it's helped them too, by seeing someone else in their cancer shoes...

 

[MinnieM3]

I thought having a mastectomy would be it, too, but my tumor was too large (5cm) and aggressive the onc said. I had NO nodes positive, but still had 6 monnths of dose dense chemo AND then 30 rads. Can't do the tamoxifen thing cause I'm not the right type (neg. or pos.... whatever you're supposed to be, I'm not). So that's why I'm finally getting around to reconstruction. I do know everything that could be done was done and I feel good with that now. At the time, I was disappointed at having to do so much.

 

[JoannaOhio]

I started blogging about my cancer journey a year ago, I just couldn't do any writing at the time of treatment, and it has helped me tremendously, and others who have read it say it's helped them too, by seeing someone else in their cancer shoes...

When I wrote about my experience 11 years ago, I didn't even have a computer. I typed it up on a very primitive word processor. Then I got the pages printed and copied, and handed them out for free when I went to women's festivals as a craftswoman. I also got a lot of very positive feedback from other survivors. Laurabelle, is your blog available for us to read? PM me if you don't want to post it here.

Thanks, Joanna

 

[laurabelle]

When I wrote about my experience 11 years ago, I didn't even have a computer. I typed it up on a very primitive word processor. Then I got the pages printed and copied, and handed them out for free when I went to women's festivals as a craftswoman. I also got a lot of very positive feedback from other survivors. Laurabelle, is your blog available for us to read? PM me if you don't want to post it here.

Thanks, Joanna

Joanna, I heard about a woman doing this...maybe it was you?!?
I'd be happy to share my blog with the other survivors here. It's pretty personal though so I'll PM you with the link. I don't really want 60,000 people reading it!

 

[snappy]

Did y'all hear the news this morning that even low does of radiation increase of getting cancer during your liftetime, especially leukemia?

I guess most of us have had cat scans, x rays, since diagnosis. Not to mention a whole bunch of mammos.

I have had 2 cat scans of the abdomen/chest area, one full body bone scan, and at least 25 x rays, since last April, 2004. Do y'all worry about this?

I think after 18-24 months my doc is going to reduce my visits to once a year, not sure if I will have to continue with the chest x rays. They saw something on one rib in the bone scan, most likely nothing since it was considered unlikely to have a met to just this one area. I guess they are just watching it.

 

[MerryPoppins]

Snappy it scares me, but not as much as not getting the tests the doctor needs. Hopefully someday they'll have better screening methods. Sometimes to fix one thing they mess up something else. But I don't dwell on it. After all, if I've kicked cancer once I could do it again, right? I prefer to remain positive, wearing my rose-colored glasses.

My friend in Mexico has a son that broke a bone. He went in for an x-ray and eventually ended up at MD Anderson in Houston with leukemia. It was a rare form and the doctor suspected x-ray. They went back and checked and the machine was faulty. No telling how many people were x-rayed there and got sick. I don't know if they took the hospital to court or not. I'm sure they are more careful in the US because no doubt there would be a court case. The good news is that the son is now an intern. He's all grown up and wants to help make other people well. He is doing great and at the time of his diagnosis no one had had that kind of leukemia and survived. They get better at treatment every day.

 

[NHAnn]

Did y'all hear the news this morning that even low does of radiation increase of getting cancer during your liftetime, especially leukemia?

EEEEK AACCKK! NOT what I want to think about, going for my second treatment today LOL!!!
I'm going to think about this instead:

What I try to tell myself is that is has to be put in God's hands, that God guides the hands of the doctors.

have a good day ladies!!

 

[snappy]

Snappy it scares me, but not as much as not getting the tests the doctor needs. Hopefully someday they'll have better screening methods. Sometimes to fix one thing they mess up something else. But I don't dwell on it. After all, if I've kicked cancer once I could do it again, right? I prefer to remain positive, wearing my rose-colored glasses.

I know what you mean by being able to do it again, if necessary. For me, just knowing what is involved gives power, the unknown is always your worst enemy.

My friend in Mexico has a son that broke a bone. He went in for an x-ray and eventually ended up at MD Anderson in Houston with leukemia. It was a rare form and the doctor suspected x-ray. They went back and checked and the machine was faulty. No telling how many people were x-rayed there and got sick. I don't know if they took the hospital to court or not. I'm sure they are more careful in the US because no doubt there would be a court case. The good news is that the son is now an intern. He's all grown up and wants to help make other people well. He is doing great and at the time of his diagnosis no one had had that kind of leukemia and survived. They get better at treatment every day.

This is a great story. Thanks for it, I love the ending.

 

[snappy]

EEEEK AACCKK! NOT what I want to think about, going for my second treatment today LOL!!!
I'm going to think about this instead:


have a good day ladies!!

Sorry, Ann. My timing stinks. I think I need to take some of my own advice and chill. Think some good thoughts during your treatment today.

 

[Laurajean1014]

My biopsy appt has been moved again to the 6th of July!

Going to the hospital for the "state of the art" extraction. Similar to what Laurabelle was mentioning. Wish me luck!

Thank you, all.

 

[laurabelle]

Did y'all hear the news this morning that even low does of radiation increase of getting cancer during your liftetime, especially leukemia?

I guess most of us have had cat scans, x rays, since diagnosis. Not to mention a whole bunch of mammos.

I have had 2 cat scans of the abdomen/chest area, one full body bone scan, and at least 25 x rays, since last April, 2004. Do y'all worry about this?

I think after 18-24 months my doc is going to reduce my visits to once a year, not sure if I will have to continue with the chest x rays. They saw something on one rib in the bone scan, most likely nothing since it was considered unlikely to have a met to just this one area. I guess they are just watching it.

Laurie - A dear friend of mine who was dxed with bc 3 yrs ago was dxed in the spring with leukemia. They think radiation was the most likely cause...
I hated reading about all the secondary cancers my chemo could cause, we're put in a really rotten position (and that's putting it nicely for the Dis).