Dis Breast Cancer Survivors - GAGWTA!

[Cruise04]

lessa - my mom had that happen during her chemo. It also spawned the carpel tunnel that had apparently been just hanging out in her wrists. She did have surgery during the first time around (well it was after the chemo and radiation). She went for a couple of massages and also had chiropractic care while she was receiving chemo so that helped her out. I remember her telling me she talked to the doctor but I don't remember what they did, if anything. Sorry.

Thanks to everyone. I was very nervous this morning but very forward in what I wanted checked out. In April when I had my annual ultrasound there was some focus on the right side of my right breast but the surgeon felt really well around there and was not concerned. When I got there I found out that the doc wanted films of both breasts. Again, there was a lot of concentration on the same area on the right side - so I'm not sure if it has gotten worse or what's up. She did squeeze the gel on my left breast and let me really find the spots I was concerned about. At that time I didn't look, actually didn't realize that it was turned so I could see, at the screen as she was doing it - I was too scared to ask if I could see. But when she headed down toward the nipple, another spot that I had found something, I was watching the screen and couldn't see anything down there. There was another spot about part way up in the middle of the breast that she stopped at and I could see something there, it looked like tissue hanging down that might have torn or something - that's what the picture looked like. So I really don't know how it went. I'll find out on Wednesday.

Because the plan was to go workout at 9, hoping to be done in time, I needed to take dd with me (she goes to Jazzercise with me and works out too) so last night when she asked what our plan for today was I told her. I told her that I had found some lumps and that I was being proactive and having them checked out. After she started frowning and was about to break down and cry and I told her - "This is a precaution for my health AND your health." She nodded and said okay. I told her then that I was seeing the surgeon on Wednesday so they could look at the films and feel around to see what they thought it might be. She seemed okay. I was very worried. VERY worried.

This is the one thing that scares me to death and I know a lot of you have had to deal with this. I am divorced from her dad, he is a dead-beat and she hasn't heard from him since February. My absolute fear is something happening to me before she's 18 and her being forced to live with him. My dh could verify, because I have kept excellent records, that he has not provided for her nor has he made an effort to (he's almost 2 years behind in child support) provide for her and that it would be in her best interest to live with my dh, which she wants to do (I've talked about this with her in the event something should happen to me). But I'm trying to focus on positive. That this is just some tissue that is coming out and becoming more defined because I have gone down 2 cup sizes and a bra size. I asked about that since I have under 100 more pounds to lose and they said, yes, as I lose my breast tissue will become more defined when I do my exams BUT if I feel something I'm concerned about to have it checked out.

And Laura - I think I forgot this last night - WHOOOOOHOOOOOOO for you!!!!! That is awesome news.

Thanks again everyone - I appreciate it so much!
Chris

 

[snappy]

Oh, Chris, what a morning you had. It is good that you are being so thorough
and specific about what you felt. It sounds like you have a very good doc, is this a GYN? Even better that you are going to see a breast surgeon. I could not believe how MUCH MORE thorough the two surgeons I had were in doing the exam over the GYN's I have known. It actually hurts when they do it right I guess.

I am sorry that you are worrying so much about your daughter at this time. You have a lot on your plate. It sounds like your DH is very supportive.
I am so glad your DD has such a good relationship with him.

Your mind is going a mile a minute but I would like to see you try to take one step at a time. The good thing about breast cancer (did I actually say good?)
is that if you do indeed have it, it is not something where you have to make all the decisions immediately. You have time to sort things out. I am not trying to minimize the situation with your daughter and her biological father. If at all possible, concentrate on yourself for right now. Having all this is a lot to have hanging over your head. Working out I find a great stress buster. Please keep on your regular schedule with exercise, it will most definitely help.
I know all this is easier said than done, my BC was diagnosed right before my teens exams last spring and my DD's 8th grade graduation festivities in which I was very involved. I struggled with which doc to go with while trying to juggle other stuff. It wasn't smart. I should have spent more time trying to get my head together rather than woryying about 8th grade retreats, dances, etc.

 

[MinnieM3]

TGIF!

Chris, I'm so sorry you're going through all this. I was divorced and had been remarried for 11 years when i got my dignosis. ExDH had just moved to Egypt for work. I had him call me and he is the only person I broke down when telling him about everything because it invovled my kids (DD was 18 and DS was 15). I needed to hear from him that would NOT try to have my kids live with him and would let them stay with their step dad (they call him dad). He was nice for once in his life and said he wouldn't dream of it and he knew they'd be better off with their step dad. It was so emotional! I feel for you!

I can't remember now who posted about radiation, but I did have redness and "burning" toward the end and after it ended actually. Got some special cream to put on it and went braless!

Oh, I order some "pink" stuff for our month! Today I got a great baseball cap that says "Cancer Sucks", a Survivor t shirt, a Car Survivor Magnet, and a Survivor sweatshirt! Love 'em!

GAGWTA!

 

[MinnieM3]

Forgot to add I got Neuropathy, too, and I'm sorry, but I never found any relief....just time and lots of it. It was the last thing to go away!

 

[MerryPoppins]

Chris, IF you have cancer (and at this point that's a big IF) that doesn't mean that you have an advanced stage. They catch cancer so early anymore. Don't jump to conclusions yet. And even with more advanced stages they can work wonders. And I've met lots of breast cancer survivors who have beat the odds. Don't get too concerned at this point. (I know, that's easy for me to say right now!) But I think you need to try to stay positive and think "If I have cancer, what do I have to do to get well?"

I do know how you must feel though. My kids were in 8th grade and 5th grade when I got my diagnosis. And even knowing that no matter what happened they'd have their dad, I was scared to death. I knew that they still needed me. Just cling to your faith that you can beat anything. And don't trouble trouble any more than you have to. Hopefully this is nothing more than cysts or something.

We met DH's birthmom tonight for the first time. She's really nice. Strange to meet another MIL when you are 44 years old. LOL! I think I'm really going to like her. I was pretty nervous, but so was she. I think we'll get along just fine.

GAGWTA! You're all in my thoughts and prayers.

 

[laurabelle]

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

Chris- I'm glad to hear they were so thorough with you, I think that's great. I know how scared you are worrying this might be it. Those of us with kids especially know your fears. My girls were little when I was dxed, 2 & 4yrs old. I was so scared that I would die and they wouldn't remember me. I was determined to do everything in my power not to let that happen. If, God forbid, if this is cancer...I know it's hard for you to imagine anything else because you lost your mom to this beast... but don't give yourself a death sentence. There are lots if us who are still here years later. In Dec. I'll celebrate 7yrs of survivorship! Yeah, I have "issues", lol, but I'm still here!!! I'm praying for your peace and comfort as you wait. I hope you find some happy distractions in the meantime.

Lessa- I got neuropathy from Taxol. It lessened over time, but it's still there. In my case, nothing was done about it. I do know of a couple people who had to stop that chemo because their symptoms were bad. I met a lady at the cancer center who's feet were so numb she couldn't feel to walk and kept falling. I don't know what they do to treat it if it's bad. Mine isn't that bad. Though I started to notice it a little more after my Remicade infusion. I mentioned it to my G.I. doc who said to watch it, he had a patient who had to stop Remicade because she got MS symptoms, she had it badly up her arms and legs. Sheesh, I get to put that on my laundry list now. I took lots of long baths and used relaxation tapes during Taxol, more for the pain after treatment than the neuropathy, which for me is annoying, but not painful. Hope it helps...

MerryPoppins- I think that's so wonderful that your mil is in your hubby's life now! I can imagine you both were nervous!!! I'm glad you two hit it off!

MinnieM3- Where did you get your cancer sucks hat???

 

[need_a_Disney_fix]

Laurabelle, my mom is on Taxol right now and has her second treatment Monday. Did you lose your hair with it and if so, how long did it take? Did you have any other symptoms along with the neuropathy?

 

[mickeymost]

GAGWTA

Laurajean - I had radiation twice. The first time about 2 weeks in the skin started to get red and a rash ( little tiny, itchy bumpbs ) started in the area. They gave me hydrcortizone and it cleared it up. I was using the Biafine cream the entire time to help prevent these things, but my skin is so sensitive it's unreal. I get rashes from bandaids!! All and all I would say it was pretty uneventful.

The second time they radiated a much smaller area, but I had bigger problems. They really aren't supposed to radiate the same area twice, but they used a different type of beam and so on. I started to get red immediately this time. I started treatments only 3 weeks after my lumpectomy though. I think that may have had something to do with it. This time the skin got redder as the treatments went on and kept getting redder for about 2 weeks after treatment. I also got a yeast infection on the skin (talk about itchy). More cream helped that go away too. It's been a little over a month since my last treatment and the tanned skin in the area has peeled away and the skin is back to normal.

Radiation is really not bad. If you start to get a rash or too red, let them know right away and they can give you something to help clear it up. The worst part about radiation is going there every day. It goes pretty quickly though.

Take care
Kelly

 

[laurabelle]

Laurabelle, my mom is on Taxol right now and has her second treatment Monday. Did you lose your hair with it and if so, how long did it take? Did you have any other symptoms along with the neuropathy?

I did 4 Taxol every 3 weeks after I finished 4 Adriamycin/Cytoxan every 3 weeks, so I had already lost my hair by then, but yes, Taxol does cause hair loss. In fact, as I was changing over from A/C to Taxol I had a little hair try to grow back but it all fell out again. It takes about two weeks to see the first signs of hair loss on most chemo drugs. For me, Taxol caused flu-like symptoms around day 4. I had alot of leg pain. I was able to function better on Taxol than A/C.

 

[Lessa of Pern]

I'm doing taxol right now. started losing hair about 2 weeks after the first cycle was administered. by the time I got the second cycle of taxol, three weeks after the first, I'd already cut my hair short and started wearing my wig. by the time after the third cycle -- I'm doing a cycle every three weeks -- I'd lost so much hair that it was easier to just buzz everything off.

what's more troublesome at this point -- my eyelashes and eyebrows are thinning.

 

[Pea-n-Me]

GAGWTA!!

I had pretty bad pain with taxol, too (every two week dosing). Several days after the first dose I couldn't get out of bed for about 36 hours, only to walk to the bathroom and when I did it felt like I was about 90 years old. Second dose wasn't as bad; third was bad and fourth was ok. Luckily I have no residual pain or numbness. They offered to try me on neurontin (which many people with neuropathic pain take successfully) but they said it doesn't work too well with chemo neuropathies. I didn't want to take it so I toughed it out. I elected to not go to work during that part of my treatment, I felt too awful at that point. Lessa, are you taking any time off from work?



I guess I was one of the unlucky ones that got 3rd degree burns from radiation at the tail end of my treatment. They did do a very large area on me including all the way under my arm and above my clavicle. It was pretty painful. They debated it but had me keep going with radiation despite the burns since no matter what it would have burned with further radiation and I did not want to stop altogether. I had some special medicated pads and gels to put on but I've somehow blocked out the names of them (and that part of the experience, LOL). I developed a secondary infection so the entire area become infected necessiting antibiotics. (I remember seeing green one morning and was like, uh oh ). I had to debride the infected burns in the shower , the pain was unbelievable, a couple of times I cried. Sleeping was difficult. I tell you this not to scare but to let others who may be reading this know that it can happen. I haven't met anyone else who's had burns as bad as this yet. Despite this problem I loved my radiation team!! I think it's one of those things that can happen and it was nobody's fault. I knew at the outset they were going to really zap me but as my doctor said they wanted to give me the best chance possible to avoid recurrence (remember I can't take tamoxifin and had a grade 3 tumor with one node positive so I appreciated their efforts).



Chris, here's a special for you. You must be terrified. Try not to think the worst. And remember even if it is something, diagnosis and treatment today are vastly improved from when your mother had BC. A friend with metastatic colon cancer once told me that she just keeps fighting and I vowed early on that no matter what, that's what I would do too, especially for my kids. It doesn't assure us we'll be forever ok, but as my oncologist says, if we had a sign at our doorstep warning us of all the dangers when we step outside every day, none of us would ever leave the house, LOL. Several weeks ago I learned in a one week period that three people I knew, same age as me, had died. It was upsetting but only one had died from cancer - the second (a friend from HS) died of a drug OD leaving his girlfriend pregnant with his first child, and the other (a doctor I knew) was hit by a truck riding his moped to work leaving a wife and 3 young boys. None of us knows or can control what tomorrow brings. Keep posting, we're here for you.

 

[Pea-n-Me]

Curious to see what you all think about this post...

http://www.disboards.com/showthread.php?t=929531&referrerid=70088

 

[Pea-n-Me]

I wanted to get this group's opinion on something. Maybe some of you can tell me something so I feel better about it, such a wise group you are.

I recently ran into an acquaintance I hadn't seen in a while. Found out she had Stage III BC last year, Paget's disease. She's age 38. She did chemo (A/C/T) but is refusing Herceptin though her team stongly recommended it (she must be Her2neu+; was not familiar with the term ). She is very distrustful of doctors and hospitals. Instead she buys an experimental treatment from Canada and injects it into her lympatic system. Very strong beliefs in this treatment since she knows others who she says were cured by it. She also claims the hospital had "tried" this treatment themselves but stopped the study because they wanted to invest in the drug company that made it. At least that's what she read on the internet.

Now first of all, having devoted much of my life and career to taking care of patients in my hospital ( which is affilitated with the one she claims wanted to invest in the drug company; the two being among the most highly accredited and reputable institutions in the world) this idea is completely ludicrous to me. I've been in a Leadership role for the past 11 years at my hospital and so am privy to the inner workings and ideologies of the institution, and I would stake my life on the fact that this would not happen here. It's not what we're about.

But more importantly, I'm afraid for her. I want to show her studies like the ones I often post here, showing her survival odds can be improved with the herceptin, but I know she'll think I'm just part of this imagined conspiracy. She has two young sons which is how we met originally. I also don't want to seem as if I'm negating her choice to take this other substance she believes in.

WWYD?

 

[snappy]

I don't agree at all withKatie Couric's politics but I respect her for drawing attention to cancer screening. I do not think that her on air procedures have been done for the purpose of sensationalism during sweeps week.

I believe she recognizes that she has a forum to help in the fight against cancer, and she is maximizing it.

I respect her for it.

She has taken a lot of heat relative to her "perkiness" and difficultness to work with. To continue her high visibility cancer awareness campaign in light of the criticism she receives scores her high points in my book.

I would love to know how many people ultimately will be diagnosed earlier due to her efforts.

 

[snappy]

I wanted to get this group's opinion on something. Maybe some of you can tell me something so I feel better about it, such a wise group you are.

I recently ran into an acquaintance I hadn't seen in a while. Found out she had Stage III BC last year, Paget's disease. She's age 38. She did chemo (A/C/T) but is refusing Herceptin though her team stongly recommended it (she must be Her2neu+; was not familiar with the term ). She is very distrustful of doctors and hospitals. Instead she buys an experimental treatment from Canada and injects it into her lympatic system. Very strong beliefs in this treatment since she knows others who she says were cured by it. She also claims the hospital had "tried" this treatment themselves but stopped the study because they wanted to invest in the drug company that made it. At least that's what she read on the internet.

Now first of all, having devoted much of my life and career to taking care of patients in my hospital ( which is affilitated with the one she claims wanted to invest in the drug company; the two being among the most highly accredited and reputable institutions in the world) this idea is completely ludicrous to me. I've been in a Leadership role for the past 11 years at my hospital and so am privy to the inner workings and ideologies of the institution, and I would stake my life on the fact that this would not happen here. It's not what we're about.

But more importantly, I'm afraid for her. I want to show her studies like the ones I often post here, showing her survival odds can be improved with the herceptin, but I know she'll think I'm just part of this imagined conspiracy. She has two young sons which is how we met originally. I also don't want to seem as if I'm negating her choice to take this other substance she believes in.

WWYD?

I THINK I woul feel compelled to share the studies with her. She may not be receptive, as you suspect, and ultimately we all must do what we think is best in our particular case. However, if the worst happens and she succumbs to BC sooner than later, you might regret not trying to educate her. Ultimately though, she is responsible for herself, and you SHOULD NOT feel guilty whatever course she follows.

I think it says a lot about the type of person you are that you are struggling with this, especially for someone that is an acquaintance and not a close friend or relative.

You rock, Linda.

 

[Pea-n-Me]

ITA, snappy. I edited my question to reflect that I was wondering more what people thought of the post itself rather than what Katie Couric did. The post kind of bummed me out yesterday.

Kind of I thought.

 

[laurabelle]

Linda, I just posted a reply...

 

[laurabelle]

I THINK I woul feel compelled to share the studies with her. She may not be receptive, as you suspect, and ultimately we all must do what we think is best in our particular case. However, if the worst happens and she succumbs to BC sooner than later, you might regret not trying to educate her. Ultimately though, she is responsible for herself, and you SHOULD NOT feel guilty whatever course she follows.

I think it says a lot about the type of person you are that you are struggling with this, especially for someone that is an acquaintance and not a close friend or relative.

You rock, Linda.

I agree!

 

[Pea-n-Me]

I saw that.

 

[laurabelle]

I couldn't not say anything to that...sheesh.