What do you tell others about treatment?

[cally]

I'm a very fortunate (I hope) cancer surviver. The doctors found my breast cancer at an extremely early stage. My prognosis is extremely good and I'm thankful. So what do I tell others? I tell all my women friends to get a mamogram and do a breast exam. I'm open about how a mamogram saved my life. What I don't tell is that I still have numbness in my breast, I have underlying scar tissue, skin discolaration. It's minor compared to saving my life but I worry about not being telling others that even survivors have consequences. I know I had a miracle but it doesn't mean that you are back to the same.

[bertha katzenengel]

1. cally - at this stage, for me, I will take ANYTHING that minor

to stay alive. If people new to this - like me, I guess - probe you for "what's it like after," just tell 'em. :hi:

[cally]

2. Please let me know. I've been through it. Surviving is everything

but it doesn't mean the consequences just are horrible. Let me know if you want some support.

[bertha katzenengel]

3. I will.

Thanks. :hi:

[OzarkDem]

4. I'm so glad to hear you're doing well

If someone hasn't been diagnosed w/ breast cancer, tell them about screening, early detection, etc. If they're at risk (have relatives who've had breast cancer, etc.) encourage them to go for screening at breast centers that see lots of patients, their doctors have more experience and better equipment. I answer questions if people ask about treatment, but don't volunteer it.

If a woman has been diagnosed and asks, its best to be honest, open and supportive and encourage her to talk to her doctor about any questions, fears, etc. she may have. I always tried to avoid talk of negative side effects unless they specifically ask, not everyone responds the same and some people go through it all without much problem.

And you ARE a cancer survivor. You have been from the day you were diagnosed! Your scarring and numbness will improve over time, but it takes longer than you think - a year or more.

[pecwae]

5. You're telling them what they

need to know-get tested for the earliest diagnosis. My cancer was found both times only through mammogram. Both times it was very. very small. Frankly, I wish others had been truthful when I went for my bilateral mast. I guess they thought they were being supportive by telling me that it was 'no big deal' or 'the easiest theing I've ever done.' In fact, it wasn't all that easy and it was a bigger deal than they let on. But, I do preach on about early detection and being your own health care advocate.

I'm numb under my arms and under both scars still after almost a year. At least the numbness that had spread all around my upper back has improved. My scars still 'twing' from nerve endings trying to heal and my left arm has a bit of mobility issues (I've had PT and still do the exercises).

One thing no one talked about was the feeling of losing breasts (and hair with chemo) and self image. When I was confronted with BC the second time I just said 'take 'em both.' Now I wish my surgeon had advised me to slow down and think a bit and consult with a couple of plastic surgeons before the mastectomies. But, at the time, all I could think of was getting rid of the damn cancer again.

As OzarkDem says everyone deals with this in their own way and I've seen some women who just absolutely want to know nothing; just do what the doctor says and ask no questions. If asked, I tell the truth, but I don't volunteer much in-depth info if I don't know the questioner very well.

[OzarkDem]

7. No big deal? Ouch.

I felt like I had been run over by a truck, several times. And all those JP drains. Self-image is a big adjustment, too, though I liked the freedom of not having anything there anymore to get in the way. I had reconstruction after a year, but it failed on the radiation side due to infection, so I'm half reconstructed. I felt frustrated and a little depressed about it for about a year or so, but finally got over it.

[pecwae]

8. Oh, OD I'm sorry.

Going thru recon and having it fail, shit! I'm considering it and have already gotten it approved by insurance. I have one more opinion to get about free-flap, but am leaning towards cohesive gel implants with tras-flap on the right (radiated side). Will you ever go for another recon of the failed side?

[OzarkDem]

10. My med onc says no (he's a hematologist)

The vascular system in the radiated skin is just so bad, it makes it hard to heal from surgery. It took a whole summer on IV antibiotics to get over the last staph infection from recon surgery. I had to wear a PIC line the whole time, but just wore long sleeved shirts. I remember being in a meeting and our Congressman Sherrod Brown came by. He asked what was going on w/ the IV and I told him. He's always been really supportive, he looked so sad I almost wished I hadn't said anything.

Note to other breast cancer survivors who may read this - I don't usually tell this story to other survivors because I'm afraid it will discourage them from having reconstructive surgery. Talk to your doctor, the odds are against this happening to you, but it is always a possibility. I was just one of the unlucky ones.

[Tracer]

6. I have an adult daughter who is healthy as can be, but ...

... she is an annoying hypochondriac.

Every day -- and I mean EVERY day -- she's tells me about an ache, a pain, a bump, a bruise, a hangnail, a sore throat, she can't sleep, she's hot, she's cold ---- to the point that if she were really sick, I probably wouldn't be able to discern it.

So -- after dealing with her whingeing all her life, I mention NOTHING to NOBODY about my cancer or treatment.

There was one occasion when, after my 5th chemo (and a shot of $3000 Neulasta) when I was really, really down and I called my sister --- just to hear her say a few comforting words.

And that was the only time.

[LeighAnn]

9. Mom?

Is that you???

[Tracer]

11. Hah!

Not unless your real name is _____________!

So ---- you drive your mother nuts also?

[bicentennial_baby]

12. Just remember this about hypos

Many of us (I am one) are this way as a reaction to our parents' or family member's illnesses. My therapists thought that mine is a reaction to my father's MS and my fear of losing one or both of my parents. I'm not the same kind of hypo as your daughter, mine is much more intense with rare episodes of paralytic fear and anxiety, but just remember that it's usually not an attempt to annoy you or others, just to vent feelings/fears we can't express. :hug:

[Tracer]

13. Hmmmm.

My daughter already "lost" her father due to divorce when she was 6. Her response to that was acting out and anger (the anger part has never fully gone away).

I truly believe that her hypochondria has nothing to do with fear of loss, but due to a very bad car crash she was in when she was nineteen —— and her own fear of things going wrong with her body.

As I mentioned upthread, I have a problem recognizing when she really is sick, and missed an opportunity just this week. A tooth abcess flared into a raging infection that required three trips to the ER, intravenous antibiotics, fluids and anti-inflammatories - plus 4 trips to an oral surgeon (and more to come).

And me? All I said the first time she complained of pain was "call your doctor".