Dis Breast Cancer Survivors - GAGWTA!

[Pea-n-Me]

Hi Everyone!

I have some catching up to do but wanted to stop by and say hello. Had a great and relaxing trip up north. Kids finally at an age they didn't make me all week. Spent most of my days lounging at the pool with nice dinners each night as well as some lake swims/dock jumps, sunset cruises, train rides, baseball throwing with DS, shuffleboard, lol, and amusement rides. And yes, I appreciated every minute of it!!

Hope everyone's doing well.

 

[NHAnn]

Sounds wonderful Linda...welcome back!

OK, just when I thoughtI was going to get through radiation with minimal effects (fatigue and some skin irritation)...today I suddenly have a very tender little lump in my armpit (lymph node ) What is up with that?? I was pressing on that fatty pad of skin just in front of the armpit, to look at the radiated skin underneath the armpit area and one of my fingers happened to catch this tiny tender area....OUCH... Guess I will mention in when I go for my treatment tomorrow....hope it's "nothing" !

Gotta run...DH is getting dinner ready It's been such a beautiful weekend here...I hope you all have enjoyed yours!!

Edited to add: I asked DH to look at my armpit (I know, very romantic LOL) and now we're thinkin' maybe I got some kind of a bug bite? We did spend a couple of hours at the beach today...sand flea maybe? There's a really tiny red mark right next to a hair follicle, right over where it's tender and swollen underneath the skin....

 

[snappy]

Hope that is all it is, Ann. Please let us know.

 

[Disney Debbie]

Edited to add: I asked DH to look at my armpit (I know, very romantic LOL) ...

Ahh - those wonderful significant others! What would we do without them? Who needs romance when you have true love?

I'd guess it's a bug bite as well. But do get it checked out.

Linda - sounds like a blissful vacation!


My DD comes back from Germany Thursday and I can't WAIT!! She'll have been gone exactly a month. She's already put in an "order" for her favorite meal for Thursday - even though she probably won't be actually at home until after midnight!!

 

[Laurajean1014]

Linda - Welcome back and it sounds like you have a great vacation!

Ann - Hope it's just a bug bite!

We just got back from RI on a Hockey Tournament. My son played well. In 5 games, he got 7 goals, 6 assists, 3 penalities (1 was a double minor ). We came in second place.

DH and I had a talk. I'm still a bit apprehensive about his strength, but I had hope. He nicknamed me "Rocky." He says I am being very stong, smart and sensible - (so, if he recognizes this, why can't he???). I'm patient.

We're getting things back to normal.

DH says that we should not discuss this with DS9. Thursday I go for the lumpecomy, what do I say when I'm lathargic and swollen/sore? The day after?

 

[Laurajean1014]

During the lumpecomy, does the specimen go to pathology and does the dr. wait for the results to see if they need to go further? Or does the dr. take out what he feels is necessary and then after a few days see if its invasive or noninvasive? If the latter is true, does he then reschedule another op if invasive?

I will call my DR., but I would love your comments.....

 

[Pea-n-Me]

Laura, the way it worked for me was the tumor was removed and sent to pathology for examination. Several days later my doctor discussed the findings with me which were pretty similar to the biopsy findings. Thankfully the margins were clear so I didn't need a re-op.

You are not having nodes removed, are you? I had the sentinel node dissection - they marked it under nuclear med scan and took out the "first" one after the tumor which they ran to pathology right there while I was in the OR. Mine came back positive so they took 7 more and studied them also. I learned several days later the rest were negative.

Glad your DH is coming around.


I just wanted to add my $.02 about how I told my children who were 12 days shy of turning 6 years old when I was diagnosed. I was very nervous about telling them and I would cry every time I thought about it. But as it turned out we had a casual, unplanned conversation one Sunday morning in our pajamas when they asked me why we had changed brands of milk (to hormone free).

I explained I had a boo boo in my breast called breast cancer and was going to have surgery to remove it. They were ok with that but worried I was going to be away from home for a while (which I was not with only day surgery). I then told them I was going to be getting strong medicine called chemotherapy which was going to help me get better but was going to cause me to lose my hair. This upset them the most. Besides not wanting me to lose my hair they were afraid I was going to be going out of the house with no hair on my head. I showed them the wig catalog and assured them I would not be going out bald. They were ok with this, too. I was surprised how well the conversation went and how they reacted pretty well. I'm sure it was a blessing that they were so young because at that time they didn't fully realize the implications, although both of our dogs did die of cancer last year and since then they've become more familiar with cancer so they do know now that you can in fact die from it (they will be 8 yrs old soon too).

To me it was important to use the words cancer and chemotherapy. I knew they'd be meeting others in the same predicament and feeling knowledge is power I wanted them to not be surprised to hear those words. I also was fearful they might somehow be teased by classmates or other kids if they found out and decided to tease them (you know how kids can be). This way they knew what it was and had the ammunition they needed should anyone bring it up or care to discuss it with them. I never regretted this decision. Their kindergarten teacher was wonderful that year, she kept a close eye on them for me and had my permission to send them to the school counselor if need be but they fared well on their own with lots of support from their school, and our friends and family.

I also was given a book by my support center called My Mom Has Cancer which I read with them. We met lots of other mothers and young children on our journey so (sadly) they knew they were not alone in this. At the Relay for Life we did recently my kids along with my friends' and family's kids participated and all the kids knew what it was all about and saw my cousin and I walk the Cancer Survivor's walk with many others from our area. (I don't know how we would have explained that one had they not known that I in fact had cancer).

 

[snappy]

I think not talking to your son is a mistake. My youngest was 8 last year when I was diagnosed. There is no way she would not have known something was wrong, I was very distracted and not myself. Also, since I had to have a mastectomy there is no way to completely disguise the drainage tubes, etc. With all the phone calls back and forth with my Mom, in-laws, sister and brother, it would have been hard to keep this a secret. I was also very apprehensive waiting for pathology results, it would have been hard for me to hide my fears, even from my youngest.

That being said we don't discuss the risks of recurrence, although my kids are aware of the risks. It just isn't something we dwell on. It does weigh on my mind occasionally but I keep that to myself, my husband, my sister and my closest friends.

The Cancer Services center in our city also has monthly activities that she loves going to with our survivors (both adults and children) and their families.

But I think the best reason to discuss this as early as possible with your son is to eliminate the "secrecy" surrounding this disease. I just think it is healthier to be open about it, to not mystify it, even with a youngster. I think talking about BC takes away its power.

 

[Cruise04]

Just checking in to see how everyone is doing.

Ann - sounds more like an infected hair possibly but definitely go get it looked at - hope they can tell you when you go for your radiation today.

ElenitaB - Will add you to my ongoing prayer list and hope you get through this round just fine and kick that into remission again!!!!! Especially so you can go enjoy your trip!!!!!

Disney Debbie - hope you have a great "reunion" with your daughter and hope she had a great time!!! How exciting waiting for her return.

Laurajean - I agree that you shouldn't keep this from you ds. But possibly waiting until your surgery is done might be what you need to do. But I wouldn't wait much longer after that.

Everyone have a good day - getting some thunderstorms here and some more rain - which we desperately need!!!! We're still down about 7 inches and the crops are not in good shape - some farmers have already lost what they planted.

Prayers and for everyone!!!
Chris

 

[MerryPoppins]

It's hot and dry here too. Wish we'd get a little rain.

I would't wait too long to tell your son. It'd be much harder if he overhears something. And a well-meaning friend might say something to you in front of him. I would think he'd be even more concerned if he felt you weren't being open with him. Just a thought.

My daughter was about 10 when I found out I had cancer. I told the kids the day that they gave me my diagnosis. DD was afraid, but she handled it okay. I just had to be sure that she knew "cancer" doesn't mean you are going to die. That's what some of the kids at school seemed to think. I told her it just meant I had some things I had to do to get well again and that we planned to do them. In fact, that's how I handle things like this now. What do I have to do to get better?

 

[Amy]

Laurajean - here's another vote to tell your son. No matter how young, they can still understand something about cancer, and since he's 9, he should be able to understand a good bit about it.

When I had my lumpectomy, they were pretty sure it was cancer, but the surgeon did some kind of "frozen" thing with the lump after he removed it - they were able to do a biopsy right then while I was still in the operating room. Once they knew for sure it WAS cancer, then he removed lymph nodes and all that other stuff. That way I didn't have the lumpectomy, go home and wait for the results, find out it's cancer and have to go back to remove lymph nodes to see if it had spread. Now this was 3 years ago, maybe the methods have changed.

Good luck to you!

 

[MerryPoppins]

I had a mastectomy, but they did the sentinal node biopsy. Tested one lymph node right then and decided it hadn't spread and they didn't need to take more. Then they sent tissue off and we had to wait for the pathology report that we had clean margins, etc.

 

[NHAnn]

Well, the radiation oncologist thinks my "bug bite" might be a lymph node but he could barely feel it (I sure could feel it when he finally DID touch it ) and thinks it's just a reaction to the internal and external inflammation.... 3/4th of the way through radiation...I'm getting pinker /redder by the day and the nipple is soooooooo sensitive and itchy!! Myself, I still think it's a bug bite but he really didn't look close enough to see the teeny red dot. Tomorrow I see the radiation nurse...I'll have her look too, but either way I guess it's nothing to worry about!

Yikes, I'd swear I wrote out a post to Laurajean this lunchtime, but it's not there If I remember correctly, your biopsy diagnosed DCIS, right? That's what mine was. (surgical biopsy of an area of a suspicious cluster of microcalcifications, no "lump" ) . I got the results of both surgeries - sugical biopsy and re-excision - about 4 work days after, in a follow up office visit. I was told lymph node biopsy was not necessary with DCIS, as the non-invasive cancer cells do not have the ability to invade breast tissue or lymphatic system, etc. Also I was told it is pretty rare for the pathology from a re-excision or lumpectomy to show an invasive component after a biopsy diagnosing non-invasive DCIS. But it can happen. (I think maybe it happened to someone on this thread in fact) If it did, OR if your lumpectomy did not get "clear margins" then you're back into a decision making mode on treatment options. For example, I had told myself that if my re-excision did not show clear margins, I was going to have a mastectomy....but my surgeon told me of a patient who was so intent on keeping her breast that she went back in a second and third time before getting clean margins. Me, I just thought, "hey, if they don't get clear margins Ill look at it as a sign that mastectomy would be the wisest course". Then again, I ALSO "always said" if I ever got ANY kind of a breast cancer diagnosis, off it would come! But...when your in the situation, and you consider all the information....you make the best decision for you at that point, and you'll know what's right, and you'll deal with what happens down the road when you get there.
It's pretty clear the consensus here is that you should talk to your son, I guess I would concur, mainly because at his age, he WILL know something is going on, and he will probably imagine far worse than the reality. Among my sugeon's first words to me I ended up reapeating back when telling DH and DD...."DCIS is NOT in itself a life threatening condition, but it needs to be treated so it doesn't develop into a life-threatening invasive cancer".

 

[ElenitaB]

Laurajean, first of all, I want to send you loads of hugs and pixie dust. You're so very strong and you deserve a LOT of credit. (Shoot... you're way better than Rocky in my book.)

I don't know your child, but I can say that they are very perceptive and pick up way more than we give them credit for. I know that you don't want him to be worried about this on his own, and with no credible information coming from an adult. Unfortunately, your DH isn't modeling the best behavior for the rest of the family... so you're the one who might have to talk to him. Don't be afraid to call someone for help on this. Fortunately, there are some amazing resources out there for women with a BrCa diagnosis. The Y-Me National Breast Cancer Organization has a 24 hour hotline, and their counselors could probably help you decide what is best for you. The number is 800 221-2141.

Just want you to know that we support you, and are sending you truckloads of positive thoughts, prayers and pixie dust!

P.S. NHAnn, after years of being freaked out about a "lump" under my left arm (in exactly the same place as yours), my doctor (who was then a new doctor to me) examined it and declared it an infected ingrown hair follicle. It's been there since before my first diagnosis, has been through chemo and everything, and doesn't show up on mammograms (even though I purposefully tell them that they have to be sure to get that area, and they do... ouch!). I can understand, however, that its location would make you nervous. Hugs!

 

[laurabelle]

Good morning ladies! I'm baaack! We ended up driving to Disney (from MD) and made great time, so we drove straight through in 13 hrs! We got there on 7/15 and just got home last night, whew! It will take forever and a day to catch up, and mentally, I'm still in Disney World!

ElenitaB- I'm so sorry to hear about your recurrance. I think you have a great attitude about it, and yes, keep those vacation plans, they've been a great goal setter for me! I guess you can say you're giving yourself a birthday present, by beginning the next battle on that day (and yeah, that sucks, I've had procedures done on my bday too).

Amy- How scary! I hope the D&C has helped...

Ann- That book you read, "Breast Cancer Husband", has a section about one of my dear friends and her hubby, Hilary and Randy Harper. Sadly she passed away last August. I can't believe it's been a year next week... I miss her so much.

Laurajean- I haven't read back through all I've missed here, but there are lots of resources available now that didn't exist when I was dxed to help talk to kids about cancer. They're more perceptive than we realize at times, and I think they get more scared of not being told anything at all when they sense things aren't right. I can write more details later if you'd like to read my story.

Sending up prayers and pixie dust to you all!

 

[Miss Mickey Mania]

Hi everybody!

I have finally got round to checking in with you all. I got back from my 11 night solo trip to POR last week and my body clock was all screwed up, but it's better now.

Well I have my first solo vacation under my belt and it went great! I didn't do too much of anything, except EAT, and put on 4 pounds. Just did what I felt like in the parks and relaxed by the pool too. I did love that resort, it is so pretty.

My mum is still doing pretty well. She is feeling good and had her 5th chemo session on the day I arrived home. I actually dropped in at the hospital on the way home from the airport to say hi. She has only 1 more to go now and all things considered, she has coped very well.

Surgery for her will be mid-September. I am not sure of all the details regarding lymph nodes etc.

I haven't had the chance to read back the posts but I do hope all is well with you all. I'm sure I'll catch up from now on.

Louise

 

[Pinnie]

I have spent the afternoon reading this thread and can't begin to tell you what an inspiration you all are. I admire each and every one of you survivors.

My mom is a 10 yr Breast Cancer survivor and a 12 yr colon cancer survivor. She is 85 yrs old and is as active as she can be on her artificial knee.

Yesterday I was told that one of my best friends has IDC. She talks to the surgeon regarding her options tomorrow. Needless to say, I am concerned. Yesterday I went for my annual mammogram and am hoping for a clear report.

I hope you all don't mind me coming here and lurking... as I said, you are all remarkable people. Bless each and eveyone of you!

pinnie

 

[MinnieM3]

Laurajean, my DS was 4 when I got diagnosed and I told him in terms he could understand. He did fine.

Been away from this board a few days. Going through some kinda major depression thing (yes, I'm on anti depression meds). I always get very anxious when school is close to starting. I've just got so much going on I broked into tears 2 nights in a row. I'm not sleeping well, ,either, and yes, I have ambein!

Saw my onc. on Monday and everything seems fine. I expect no less.

Had to go back and see my plastic surgeon as I've had 4 days of excruciating pain in one area of my DIEP reconstruction. It seems, there is a muscle constantly contracting RIGHT over where they did they main muslce repair (he said we sewed you up with rope at that point!) and it's pushing on that healing muscle and causing great pain. Got no pain killer or muscle relaxers Just taking ibuprofen and putting warm moist heat on it). It's just got me down. I WANT TO BE DONE WITH THIS THING!

 

[CheshireVal]

Hello, everybody I hope you are all doing well. I think about this thread all the time, but I haven't had much time to post since I've been at my aunt's (providing moral support) for a while, and she doesn't have a computer.

I don't know if anyone remembers my story, but my mom had a surgical biopsy last week, and we got the results yesterday: no cancer. She had all but scheduled a mastectomy for herself, but the lumps turned out to be benign.

My aunt (her twin) is having a very rough time with chemo. There is one particular medicine she gets (taxol) that makes her utterly depressed and angry. We're all very worried about her; whenever she has a taxil week, she seems to lose interest in fighting this battle. She lashes out at her family, she doesn't ever smile, etc. I know it's just the drugs doing their thing, but it's hard. She says she has felt her big tumor in her armpit shrink a bit, though, so maybe that is positive news.

Anyway, good luck to all of you out there-- keep up the fight, and I hope to not be such a stranger around this thread from now on!

 

[NHAnn]

Val...so happy for your mom's news! Sending good positive thoughts for your aunt's battle...that does sound good that the tumor is shrinking!

MinnieM3 ~ sorry you are down, but it's good that you can come here and vent, hang in there

Pinnie...you are most welcome here! I love hearing about determined survivors like your mom!

Louise...welcome home

Today I had number 20 of 25 radiation treatments. Next Wednesday is my last one! I have no energy by late afternoon, and getting much redder the last few days, but this part of the journey is almost OVER!!

Sending hugs and healing thoughts to all who needs them....