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New and scared to death
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Donna_MN posted:
Hi everyone. I've been reading some of the stories on here and wish I could reach out and give each one a hug. Now it seems I'll be needing a hug myself and then some.

I went in for my mamogram October 1st. How ironic when it happens to be breast cancer awareness month. Just 2 days later I received a call that I need to do a followup digital mammo and an ultrasound. Caught me off guard but plan to do it. As usual, my life turns into a soap opera and I'm picking my daughter up from school and heading to the ER. She's fine, but they had found a cyst on her ovary and her WBC was through the roof initially. I cancelled my followup test thinking we'd be doing surgery with her. Turns out we don't need to do surgery and just have to followup in 2 months. Whew. That parts over.

I had called the clinic back to see what prompted the tests I'll be doing. The receptionist said the doctor and nurse had notes written all over my chart but would have the nurse call me back. She called me back and it shook my world. Not only did they find a 1.5 cm lump but also a mass behind it.

I know I can't see into the future, but I'm already expecting the worst. The size of the lump seems huge and the mass is like putting me in the ground already.

To add to the problem I'm dealing with depression and stopped taking the medication in June. Knew better but felt fine and have done constant battle with our insurance company and thought I'd save money to spend on the medication they wouldn't cover.

And yes there's another issue to add to this. The daughter I mentioned above is 13 and has aspergers syndrome (milder form of autism for those who don't know). I tried explaining in a nutshell to her and her 11 year old sister the tests I need to do and the older one has brushed me off big time. She's obsessed with her friend who is a bad influence and it's her over the rest of the world. I keep trying to remember it's just the asperger's talking, but it still hurts.

Between all this and cutting the rest of the world off due to the depression there's basically no support. I get some from my mother-in-law and sister and sister-in-law, but next to nothing from my husband.

There's moments I just want to say forget the testing next week since I truly believe it has to be cancer they'll find. A mass is a big hint that it's probably already spread too. I figure if I can't get any support at home, why bother.

Sorry for going on and on. Just scared and wonder if anyone else ever hit bottom like I have. Didn't meant to drag this out, but thanks for letting me vent.

Hugs to all going through their own nightmare.
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coffecup responded:
Hi Donna,
I just logged onto this site for the first time and read your post. Please get the tests done! It is worth knowing, and the earlier they find it, the better it is to deal with. I too had an abnormal mammogram, on September 16. After eight hours, in which they did two different mammograms, an ultrasound and a core biopsy, I walked out with a "probable" cancer diagnosis. It was confirmed in a phone call the next day, followed by an MRI the following day and a meeting with a breast surgeon the day after that. They didn't let any grass grow under my feet!
I am now almost a week post-lumpectomy, where the tumor was 1.5 cm. and there was no lymph node involvement! I feel extremely blessed...all because I dealt with this early.

I understand your daughter is self-absorbed...that is typical of the age, and is only amplified by the Asperger's. I am truly sorry you aren't getting more support from more people in your life..it seems like you have to rely on us here on this thread and your own self-worth. Please, please go through the testing! I firmly believe that ANYTHING can be dealt with if you know what it is. The fear of the unknown can paralyze us..the knowing puts a real face on the truth.

Please know you aren't alone.

Sue
 
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rachael67 responded:
Sweet Donna, please feel the hug we all are sending your way!!

No one can walk totally in another's shoes, but I promise you that everyone here knows that dreadful neighborhood called "limbo"...A really scary place for sure! And most of us are also blindsided by this challenge. Me? I often described it as being totally overwhelmed!

Yes, by all means go for the tests! The monster you know is far less scary than the one your imagination can create!! Right now you are functioning in the dark...Makes that neighborhood of limbo even more frightening!! Once you know exactly what it is you are dealing with and have a plan of action in place, you will be amazed how much more in control you will feel. Each step of the way the intensity of fear will lessen.

Some suggestions for walking this path (wherever it may lead): FIRST AND FOREMOST: BREATHE!!! Slowly and deeply, in and out...Again, slowly in, slowly out...Repeat over and over until your world begins to slow down to a little more comfortable pace. (This is perhaps the best exercise. Not only has it helped so very many of us, it is non-addictive, free, and always available! Use it often!!)

Secondly: Become informed but NOT lost amid the information! With the availability of the internet, we tend to read and explore and along the way BORROW TONS OF TROUBLE!! Begin by learning exactly what you are facing. Seek good physicians and medical personnel. Research on reputable sites. Bring all you learn to your physicians and ask loads of questions...Don't let any get away with not answering you fully and completely. If any of them object, walk away!! Good doctors know that an informed patient who is their own best advocate has the best odds!

Don't hesitate to seek second and third opinions!

OK!!! Time to breathe again!!! In and out slowly; repeat!!

Now, you need support! A teenager is probably not your best source...with or without Asperger's, they tend to only think of themselves. Or if they are on the opposite side of that coin, they are scared to death, and react rather bizarrely!

You will also find that adults can react in unexpected ways. Sometime out of fear, other times out of ignorance, and still other times simply because they don't know what to do! This is especially problematic for a husband who feels he should protect those he loves and when this is impossible, he freaks out, blaming himself! Often if we, the patients, make it clear that we do need them, they respond. If not, please give them and yourself time to adjust to this "speed bump"!

From what you said, you were having some emotional problems in the past. Now is not the time to play "Superwoman" but to seek the advice and assistance of your previous counselors. Sometimes the assistance of a therapist and a tad of meds can help us greatly. Know that this does not mean "forever"...just while we are facing this stressful time.

There are most likely support groups you can join in your area. Ask all of your medical team if they can recommend one for you.

And, of course, please come back here as often as you need. We're open 24/7 just for one another!! And do let us know how you are doing. Okay??

Blessings.
Rachael
Just when the caterpillar thought her world was over, she became a butterfly! Don't give up five minutes before the miracle!!
 
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rachael67 replied to coffecup's response:
Sue, welcome to the club no one wishes to join, but where you will find caring folks.

I hope your journey is as smooth as is possible. Take a look at what I wrote to Donna as perhaps some of it might help.

Please keep us updated on how you are doing. And come back often!

Blessings.
Rachael
Just when the caterpillar thought her world was over, she became a butterfly! Don't give up five minutes before the miracle!!
 
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jenna291 responded:
Hello Donna and welcome to the site. I am sorry for what you are going thru, but sure hope you do get the necessary tests to get to the bottom of this. I had a 2.5cm tumor 6 years ago not caught on a mammogram, found it myself 3 months after the mammo and needed chemo, then lumpectomy, then radiation. I reacted when I felt the lump, thankfully, or it may have spread. I had 14 nodes removed, no cancer thank God in them.
Please know there IS light at the end of the tunnel. We all know what you are going thru here, and will answer any questions or help in any way we can. Venting is good and needed!
blessings to you and please let us know the outcome of your tests.

Jenna
 
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jenna291 replied to coffecup's response:
HI Sue,I am so glad your doctors were so pro-active and got things moving quickly for you. Sounds like you are doing well.

sending you hugs and blessings,
Jenna
 
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dog29 responded:
Donna! you are going to be fine, just think positive and have faith, I got diagnosed in January 2013 of this year with breast cancer ,I had mastectomy on my left side, went to chemo, still on it every 3 weeks for a whole year and 6 weeks radiation, but every case is different, keep us posted, god bless, I pray for you, Christine.
 
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coffecup replied to jenna291's response:
Thank you so much for the warm welcome Rachael and Jenna, You are completely right that no one wants to be part of this club! I'm doing Ok with everything, but have a question for you. Did either (or both) of you try to work during your treatments? I have decided to take a medical leave until the treatments are over, but was curious how others have handled it I'd also like to know if either of you, or anyone else that reads this, has had the oncotype testing done.

Blessings to all of us on this journey that no one ever expected to take,

sue
 
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rachael67 replied to coffecup's response:
Sue, I did not have chemo and so I have no answer as to my take on working and going thru that. However, I do know that many ladies do and have done so.

I did have 35 rounds of rads, and tho' I didn't have a full time job, I doubt I would have had any trouble. I didn't even experience the fatigue which so many speak of..

That being said, please know that just as every patient is individual so, too , is every cancer case. There is no set rule. It is something you and your medical team and your work-place team as well as your own BODY must decide. It may mean that you continue until you find it too difficult. Or it may mean you decide not to work. Or whatever...Just
be kind to yourself and appreciate that you will do your best ...and don't demand of yourself that you become Wonder Woman!!

As for the oncotype, it is HIGHLY recommended as a helpful tool in determining the best approach for you and chemo treatments.

Blessings.
Rachael
Just when the caterpillar thought her world was over, she became a butterfly! Don't give up five minutes before the miracle!!
 
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georgiagail replied to rachael67's response:
I worked through my 33 rounds of radiation (no chemotherapy) but I was lucky that the center was right next to the hospital that I work at. I had my treatments scheduled for 7:30 in the morning Monday through Friday; the staff was great at calling me back; I'd usually be done by 7:40 and at my office before 8 am.

Toward the end I'd have fatigue later in the day which was a bummer but that soon improved once the radiation was over. I was lucky that my job is mainly a desk job.

I also had the oncotype testing done and was happy to hear I had a very low risk rating.

Gail
 
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jenna291 replied to georgiagail's response:
HI coffeecup,
I started chemo 2 weeks before Xmas. I worked thru the first one then took a 12 week leave from work. I had a strong chemo cocktail every two weeks that lowered my red and white blood counts so I was exhausted and the docs worried I would catch a nasy virus being winter.
I stayed home and got plenty of rest and tried to eat fairly balanced meals and stay hydrated. When I had a lumpectomy a month after chemo, I took another two weeks off. After that, 33 rounds of radiation and I was back to work 26 hours per week. I went every day at 4pm so by the time I got home from the day I was really tired. It is a lot to endure listen to your body and do what is best for you. I never could have worked thru the chemo.
best to you with everything and please let us know how you are doing -
jenna
 
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jenna291 replied to rachael67's response:
Rachael, I just want to say that it is so nice to see you posting time and again. I miss the gang, the cabana boys, and Pinkie! Not the same, as you well know!

be well ~
Jenna
 
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rachael67 replied to jenna291's response:
Jenna, what is your email??? (I checked and you don't have it in your profile.) Are you on Facebook?

Rachael
Just when the caterpillar thought her world was over, she became a butterfly! Don't give up five minutes before the miracle!!
 
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jenna291 replied to rachael67's response:
HI Rachael, it is semperfi291@hotmail.com . I don't do facebook, can you believe it? I know it limits me but never got started!!!

Have a great day; pretty cold in Boston today!

Jenna
 
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diytestkitsdotcom responded:
Hi Donna,

I'm sorry that you are going through a tough time right now. I hope it will get even a little better for you. A small improvement in the support department might do wonders. And that is what I truly hope for.

I know you were really hurt when you thought that your kid didn't seem interested with what you are going through. But, you also know that it's just because of her Asperger syndrome, so don't let it get to you. Your daughter loves you. Hold on to that thought. She just doesn't understand some situations at times, and it's difficult for her too. And it's not because she doesn't care for you. She does, only that she doesn't fully get what's going on. You may need to do some intensive explaining later on.

You are amazing, don't you know that? You are facing a tough time, yet you start your post with wanting to comfort others who might be going through the same circumstances. You cancelled on your follow-up tests, so you could put your daughter's health first and make sure she will be okay. That, right there is selfless. To think of others before yourself is something admirable. I hope more people see that. Hopefully, they too show their care for you.

Did you get the tests done? What were the results? Keep us all posted.

Be well. Be brave. Be strong. Be loved.


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