Dis Breast Cancer Survivors Part II -GAGWTA!

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Thank you, Pea-n-me. Thank you, Snappy. I'll try to be more "present". Actually I couldn't re-find this board for a long time. I kept looking in the "Coping and Compassion" boards. Should have known we survivors would be "Just for Fun".

As to my "problem":
My physical therapist thought there could be adhesions and worked on the area quite a bit. It helped. Actually I do have quite a bit of mobility in my arm now...not a whole lot of strength, but, hey, I'm alive. So the adhesion angle is a real possibility. I see my surgeon again in July and intend to pursue this more aggressively.

I think that for a long time my whole attitude was "well, at least I'm alive". And it's only been the last number of months that the quality of life is come into question. Not that the quality of life is so bad. But it's the little things: numbness, pins and needles in my pinkie and ring fingers on my chemo arm; the muscle cramps in my chest; heck, the concave area, not just empty area, on my chest; and whatever happened to my sense of smell? Or taste?

These aren't issues that are going to bring me down. But if they're correctable...within reason...well, for goodness sakes, let's correct them! So...

As our favorite CMs say, "Have a Magical Day!"
 
Hi everyone!
I wanted to share a news article in our local newspaper. It's about all the recent childhood cancers in the area. Thought you might wanted to read it.
There ARE other people in the area with cancer who didn't want to be named, so that might be a thing to keep in mind.


The Pennsylvania Department of Health has opened an investigation into a cluster of childhood cancers in the Pocono Mountain area.

"We're investigating," said Holly Senior, a department spokesperson, though she added that little else could be said before the research was performed and the results came in. "We don't have anything to report — good, bad or indifferent — at the moment."

A cancer cluster is a greater-than-expected number of cancer cases in a geographic area over a period of time.
Parents of several of the afflicted children brought to the department's attention the existence of at least six cases of cancer that had been diagnosed over 21 months among young teenagers who live, or lived for a substantial period, within a 7-mile radius. Those parents also contacted the Pocono Record and shared news of the department's investigation.

Four of the children have osteosarcoma, which is the most common form of bone cancer. Four in 800,000 children contract osteosarcoma nationwide, according to the Centers for Disease Control and Prevention. The four cases contracted locally occurred among some 8,300 children, according to Census data for Tunkhannock and Coolbaugh townships that were adjusted to reflect growth.

Another child has brain cancer and still another has a form of leukemia. One of the children has died, while the cancers in two others are in remission.



"I'm sure that what's gotten the attention of the state are the four osteosarcomas," said Dr. Samuel Lesko, medical director and director of research at the Northeast Regional Cancer Institute in Scranton. He is not involved with the state's investigation. "It's the same cancer type, and we are inclined to think there's the same underlying exposure or risk factor."

While osteosarcoma is fairly rare in the general population, it is the sixth most common form of cancer found in children, especially teenagers whose bones are growing rapidly and are therefore more vulnerable to their replicating cells going awry.

"I don't want people to freak out," Lesko said, "but I'm glad that the state is investigating it."



Generally, in investigations of this sort, epidemiologists scan cancer registries and try to collect data from the subjects themselves.

"If they see a similarity, the question becomes, 'What's a common exposure? Did they all go to the same school, use the same playground or drink from the same aquifer?'" said Steven Godin, a health professor at East Stroudsburg University whose specialty is cancer.

While all four children with osteosarcoma spent some time in the Pocono Mountain School District, one had moved frequently and another had been home-schooled since 2001. Two have lived in Pocono Farms East, one each in A Pocono Country Place, Echo Lake, Arrowhead Lake and Stonecrest Park. Some had spent most of their lives in the Poconos, while others had moved here more recently.
Another possibility is that the children, with their weaker immune systems, may reveal the presence of an environmental toxin that is not yet understood, similar to how canaries responded to the presence of poisonous gases in coal mines. "If the canary in the mine shaft draws your attention to something that shouldn't be there, we'll have to deal with that and clean that up," Lesko said.

"If we don't find (a common link), that might reflect our ignorance about exposure," he added. "We don't know everything about potential causes."

At the same time, experts cautioned that the cluster could turn out to be a collection of tragedies that just happened — awfully — to occur randomly and close together, but without a common cause. "When we think of the history of cancer clusters, that's as often the case as not," Lesko said.
Some said the situation on the mountain pointed out the gaps in public health infrastructure locally.

"One of the problems we have in Monroe County is we don't have mandatory testing. We don't know what's in the well water," said Godin of ESU. "We don't have the infrastructure to say there may be illegal dumping going on. We don't know until it's too late."

Efforts have been launched in the past to start a public health department on the county level.

"We're very vulnerable to things," said Barbara Herting, a retired pediatric nurse who has been leading the charge to start a health department in Monroe County. "My heart really goes out to those families. The state health department can only do so much."

Monroe County Commissioner Chairwoman Suzanne McCool reportedly has reached out to Pike, Carbon and Wayne counties to see if there was interest in starting a regional health department.

"You'd have people on top of this right away," Godin said of such a department. "Having that infrastructure would lead people to come forward and say what they've seen or what they know."

The Pennsylvania Department of Health's investigation is expected to take several months.

"The encouragement I'd give to the community is to cooperate with the state, but don't expect an immediate answer tomorrow and to find a smoking gun, so to speak," Lesko said. "Unfortunately, that often does not happen."

That sense of closure is what some parents crave, however. "We don't want to see anyone else get sick," said Lori Abramouski, whose son, Thomas, has survived a bout with osteosarcoma. "If there's something out there causing this, I want it to be addressed."






GAGWTA! Sonya.
 
imabrat, I absolutely believe there are environmental and other factors at play in cancers in many areas throughout the country. It's good to be aware of them.

Here in MA, we've had our share of cases. There was a movie made about one of them starring John Travolta, A Civil Action. I remember reading years ago about an area in Middleboro that had clusters of Lou Gherig's Disease (ALS). And on upper Cape Cod they're investigating clusters of breast cancer and childhood cancers like leukemia and another (whose name escapes me right now), but that they suspect are related to ground contamination from the air base there. Here are some links.

http://www.capecodtoday.com/blogs/i...e_sandwich_has_uniusal_cancer_pattern?blog=53
http://www.capecodonline.com/apps/pbcs.dll/article?AID=/20070504/OPINION/705040370

It's frightening. And last week I read about plastic bottles now being thought to cause problems? There are so many things out there. But you have to ask, why have certain cancers and other diseases increased exponentially in the last few decades. I don't think there are easy answers, but it really does all need to be looked at. Public health professionals have their work cut out for them.
 
Peanme,It certainly is frightening. Just wondering, but the childhood cancers on the cape, would they happen to be sarcoma?
That's what's prominent in our area..leukemia and sarcomas. Particularly osteosarcoma and ewing's sarcoma.
 

Hi everyone! I am just back from disney...it was good and bad. The good part was just simply BEING there...since I love it so much. The bad was that my friend who was with us decided that she did not like disney and that it was too expensive...so she complained a LOT. It was HER idea to go, but she began to insist that she did it for me. I was not happy! The highlights were feeling well enough to walk around (three weeks after chemo ended), eating food that tasted good! and enjoying time with my daughter. We had an amazing meal at Tokyo Dining and had a window seat for Illuminations. Anyhow, I am excited to plan an all out trip for December since I had to cancel my last December trip for my surgery.:scared1:

Dawn...I am so GLAD to hear from you! Sorry about the lymph nodes. I had one sentinal positive and one axillary with micro amounts..so I had TWO also! I took the hard chemo and while I will never say it was easy....I made it through. It was challenging but we will be here to support you!

I decided to do radiation...it was not mandated...and I start that this week. I am prepared but nervous. I figure by December I will have my implant in and my expander OUT and my other breast reduced to match...but even more importantly... I will have my HAIR BACK! YAHOOOOOOOOOOOOO.

GAGWTA!:grouphug:
 
judithen, I had a mastectomy, but they were able to leave quite a bit of "meat" on that side. I don't have painful cramps, but I do have muscle spasms where I feel the muscle jerk and jump. I've never asked about it because I assumed that maybe I had them on the other side and just never paid attention since maybe they felt different with a breast? :confused3 Since mine isn't umcomfortable, I'm not really concerned about it.

Lookingforward, I'm sorry your friend rained on your parade. Some people just don't get it, do they? Hope you enjoyed the trip in spite of her.
 
Thank you, Pea-n-me. Thank you, Snappy. I'll try to be more "present". Actually I couldn't re-find this board for a long time. I kept looking in the "Coping and Compassion" boards. Should have known we survivors would be "Just for Fun".

As to my "problem":
My physical therapist thought there could be adhesions and worked on the area quite a bit. It helped. Actually I do have quite a bit of mobility in my arm now...not a whole lot of strength, but, hey, I'm alive. So the adhesion angle is a real possibility. I see my surgeon again in July and intend to pursue this more aggressively.

I think that for a long time my whole attitude was "well, at least I'm alive". And it's only been the last number of months that the quality of life is come into question. Not that the quality of life is so bad. But it's the little things: numbness, pins and needles in my pinkie and ring fingers on my chemo arm; the muscle cramps in my chest; heck, the concave area, not just empty area, on my chest; and whatever happened to my sense of smell? Or taste?

These aren't issues that are going to bring me down. But if they're correctable...within reason...well, for goodness sakes, let's correct them! So...

As our favorite CMs say, "Have a Magical Day!"

I had that lovely concave silhoutte as well. I was amazed the difference a tram flap made, I never would have thought the P.S. could fill that void but he did. I was concerned that further surgery would cause other problems like pain or lympheda, but it did not.
 
I know what you all mean about reminders of chemo. My middle two toes are not exactly numb but tingly..and it bothers me. My oncologist says its not permanent...I hope not. ALso, my sense of smell is slowly coming back but not completely there yet.
 
lookingforward, sorry your friend was a bummer. I hate when that happens. ;) But glad you had a good time with your daughter. :wizard:

What were crowds like? We know from Sha it was really hot!!
 
LookingForward, I'm so sorry your friend was not "giddy-fied" by the Disney Magic. Some people are just immune to Pixie Dust. Their loss. I have a good friend who's immune, too. Nothing would please me more than to share the World with her. But...it's not to be.

As for the reminders of chemo...ahhh. What can we say? For me chemo brain was the worst reminder because we have our own Mom and Pop business...Mom needed her faculties. Fortunately, that's diminishing (I'm 3.5 years down the road from my last treatment). But it was work! I don't think my needles and pins are going to leave, though.

I had 6 months neo-adjuvant chemo, then surgery, then 6 weeks radiation. My hair started coming back in during the Taxotere portion of chemo...peach fuzz. Four months later I had a pixie style. By 5 months, I needed a haircut...it wasn't long...just growing unevenly. First it was steel gray and very curly...it had been brown and straight. Today, 4 years later, it's mostly brown and straight again...all on it's own.

As for the radiation, there's a prescription cream that I swore by: Biafine. That and a good aloe vera lotion. I used them religiously, multiple times a day. The important thing is to keep your skin soothed. I don't know if you're having the newer "short" radiation or the "long" 35 + treatments. One way or other, don't worry if you experience tiredness. It goes away.

You've got the right survival philosophy though: Do Disney whenever you can!!!
 
I had that lovely concave silhoutte as well. I was amazed the difference a tram flap made, I never would have thought the P.S. could fill that void but he did. I was concerned that further surgery would cause other problems like pain or lympheda, but it did not.

Snappy, that would be SO nice to be...filled. I put off reconstruction because I had 3 more surgeries for pre-cancerous endometrial tissue...unrelated to the breast cancer. MORE surgery was NOT my cup of tea. At the time.

Now I'm beginning to think twice about it. I've only talked to one woman with the ACS who had the flap surgery done...back, I think. She had mixed feelings about it because of continuing back pain. But what about anyone else? Any reconstruction stories, good or bad?
 
Merry Poppins, isn't that the truth? We hardly pay attention to our bodies...what with everything else going on in life...and then don't know / can't remember what "before" was like.
 
I had a not-so-positive reconstruction story. Athough mine probably had more to do with the PS than anything else. I had an extender put in during my initial surgery in September. Before we got it completely filled it ruptured. The PS admitted he "might" have missed the port and punctured it. No problem, we'd have another surgery to replace the extender (on Christmas Eve of all times) and go through all the injections again (I hate needles). Then another surgery to put in the saline implant. The thought of all the surgeries turned me off and I just had the reconstruction reversed. Maybe if his attitude and the attitude of his staff had been different, I'd have gone ahead. :confused3

Now I'm perfectly happy with this me, so here I'll stay. The only time I really wish I'd had reconstruction is in the dead of summer when my prosthesis is hot and makes me sweat. But overall Betty is a part of me now and I'm content. But this obviously is a very personal decision. I don't blame anyone for going ahead with reconstruction if they want it.
 
Snappy, that would be SO nice to be...filled. I put off reconstruction because I had 3 more surgeries for pre-cancerous endometrial tissue...unrelated to the breast cancer. MORE surgery was NOT my cup of tea. At the time.

Now I'm beginning to think twice about it. I've only talked to one woman with the ACS who had the flap surgery done...back, I think. She had mixed feelings about it because of continuing back pain. But what about anyone else? Any reconstruction stories, good or bad?

You probably don't really want to hear me gush about how I glad I am I went through with it. I did not have any other surgeries to deal with in the interim but I really feared going under anesthesia when it wasn't life or death.

So I agonized over it for over 2 years. Finally, I did it. I had such a huge remaining breast that it was a real joy to have that one modified to match the newly contructed one. My doc said women like me were probably the best candidates as the surgery and reduction really does improve your body.

I won't kid you, it was a boatload of surgery. Although I was only in the hospital for 2 days, the drugs really did a number on my system so I went cold turkey after 4 days. I hurt but I got back to normal faster. DH stayed home with me for 8 days. I would say I would have never made it without him there 24/7 for those days.

I also did the surgery just to feel normal and balanced not to have a perfect set. I really managed my expectations and got way more than I hoped. I loved my doc and his nurses were exceptional, as was the hospital and the hospital nurses.

It was really a positive step to make after the mastectomy. Like putting the proverbial Humpty Dumpty back together again.

I had no complications though, some women do. It really is a big surgery.
If you have any other questions, ask away. Another of our posters here had it recently, Alison. I'll have to look up her DIs name, but I think she also did really well and was even back to work in record time.
 
Snappy and Merry Poppins, you do give opposite ends of the spectrum reviews! And much appreciated.

DH says if it's not broken, don't fix it..."you look fine", "why worry about clothes" etc. And I love him for it. But...

I was the woman who insisted "it's not my breasts that make me a woman". Yes, if I'd been stateside instead of posted with my DH in Germany, I'd have burned my bras with the best of them in the '60's. I guess that does date me...

So, my "change of heart" sort of takes me by surprise. I don't think I look ugly or anything. I'm just tired of worrying about necklines or armholes. And...okay, I admit it...I miss my breast. More as time goes on and not less like I expected. Well, a woman has the right to change her mind. So at this point, I'll put out feelers with the surgeon in July and maybe see a plastic surgeon...

But bring on those experiences. The more I know...
 
My advice is that if you've feeling urges to do it...you should check it out. Just be sure you get a plastic surgeon that you really like. Especially one that shows a little sensitivity. I was still in the "I don't want to ruin this Christmas with my family...I've been through enough and they've been through enough" stage. It also crossed my mind that it could be my last Christmas with them. The last thing I wanted to do was have surgery on Christmas Eve and the staff couldn't understand that. VERY insensitive.

I've heard that others absolutely loved their plastic surgeon. They found someone who not only talked, but listened. I think that may be the key to at least the beginnings of being satisfied with his work. So choose wisely and don't be afraid to get another opinion.
 
BTW LookingForward, this is a Bald Me and my Bald Children and Grandchildren at the Animal Kingdom - 1st Round of Adriamyacin and Cytoxan, cycle 2 - Day 9. The kids shaved their heads in my honor as a surprise and BOY was I surprised! I didn't recognize them when they came to the Sanford Airport to pick us up. And we did have a Magical Day!

Well, that didn't work...when I figure how to upload a photo to this forum, you'll be able to see the Bald family! Sorry!!!
 
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