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Topic: Just Diagnosed- Get Prepared

Forum: Just Diagnosed — Discuss next steps, options, and resources.

Posted on: Feb 13, 2010 04:47AM - edited Nov 8, 2017 09:15PM by sas-schatzi

sas-schatzi wrote:

My breast cancer was diagnosed in Jan 09. My husband was dx'd with lymphoma in April. The following are some things we learned on our journey. I hope they help. Rather than rewrite everything in sequence, because I missed putting the fax in the rewrite of the outline, I'll put it here. I strongly recommend you get a fax machine. In the very active phase of our diseases, not uncommon to have sent several faxes a day.

VACINNATIONS UPDATE ASAP after diagnosis- shingles, pneumonia, tetanus, whopping cough. I'm concerned right now about reports being circulated about problems with the flu vaccine. Personally,, I won't be taking it until further studies are completed.

DENTIST check up asap after diagnosis. Generally, can't be done after chemo and radiation treatments start

A. Monthly Planner, I prefer the kind you can read 30 days at a time. Allows you see what is going on for the the whole month. More efficient than a 7 day planner.

B. Monthly Planner Contents: place names and addresses in the address section of the planner. Write, doctor and secretary name, phone, fax, office hours, address. You, also, can take a business card cut off edges and tape it in. Add all your health insurance info, inclusive of id#,group#, phone#, address. Add anyonesname that you have talked with that affects your condition. Then make a computer copy of all the same. Make individual lists inclusive of all information i.e. a doctor list, insurance list of contacts. Saves time when someone asks for a list. AND the dreadful occurrence should you loose your planner. I was obsessive about putting, this in the carry binder. I kept binder and planner near phone for quick access for medical phone calls.

C. Ring Binders for Information Storage: 1.medical information: divide by history & physicals, lab work, diagnostic imaging, consultation visits and report. 2. insurance: explanation of benefits (eobs), and bills. 3.Educational: information that you want to retain, organize to preference. 4.Employment: policies, communications from work, consents, disability: short and long term. File any communications from employer and disability carrier. 5.Social Security Disability: application, communications, award letter. This will keep you from drowning in paper and make things easier to find. We had nine binders between the two of us for2009. Label binders on front and side

D. Carry File Binder: It is very similar to the binder sent out by the breast cancer society, but more sturdy. Put copies of following testing that were SUPPOSED to be already presented to the next doc. It's not a duplicate to ring binders. Copy of initial testing and current informatiom from at least six months. Helpful when doctor hasn't received expected information. I was able to hand it to them. Make sure you get back your original before leaving any office

1.Information to include in binder:

a. Before most chemo's/and radiation, they will want you to have a bone density. Put in the first

bone density ever done, this is your baseline. Put in last study done before the radiation. Have PCP evaluate this in depth to track baseline compared to newer studies. Keep for the remainder of treatment. Bone density is adversely affected by many treatments. Needs to be reviewed as new studies are done, by comparing to older studies

b. Blood work--try and have labs all drawn at same facility. Ask them to run them so each week or month are in columns side by side. This makes it very easy to follow trends. Our Oncology center does it this way. Also, make it easy to keep only last 12 months on few pieces of paper. If you go to other specialists, write their lab results on this lab profile. Take labs no longer needed in the carry binder and put them in your medical into ring binder.

c. Keep one copy of you bc pathology report in this carrier.

d. Keep copy of genetic studies

e. EKG, echocardiogram, stress tests

d. xray, ct, pet scan, bone scan reports --most recent report

E. Diagnostic Imaging Reorts: ask radiology center to cut a cd. Pick up only after docter report added. You'll probably have to wait a week, but it's worth it. Doctors not up to date on how to use cd's will ask for films' You then have to go to the facility and pick up. BUT if you give the facility, that has your films enough notice, they may deliver them to the doctors office for you.

They always attach a paper copy to the film, but over time they can easily get lost, Getting and keeping a copy of these xray papers is important. Avoids fraud when they say they can't locate previous records. It's amazing how many screw ups are covered up by the phrase--"no previous films to compare to".

Story: I found out they were watching my bc site for years when I went back through old records(10 years approximately) . BUT then when it became an issue the mammo's "had disappeared." They denied they had been watching anything. WELL I have sequential copies that states they were watching, but I haven't decided what to do yet.

F. Medication/ Allergy List: carry list in folder that you can hand them at entry of new visit or follow up. It gets old rewriting each time. Get original back before leaving office.

G. Mileage: list from day one, to and from any doc/pharmacy/diagnostic center for tax purposes at end of year. Use a page in the monthly planner. Top of page:destination, miles(determine from mapquest. For taxes run copyof Mapquest, include in tax file. Make file for mapquest copy. I've used the same file for 3 years. Recopy for next years taxes.

H. Receipts: Container to put in all receipts related to out of pocket payments for tax purposes. Copies of all checks written for medical treatments, pharmacy, otc items. Keep separate from household stuff, avoids sorting at end of year.

I. Pharmacy mail order: Use your insurance companies mail order company for drugs.We made a huge money mistake by not using the insurance companies designated pharmacy-HUGE. At the end of the year ask for a computer run of of total spent at each pharmacy for tax purposes. Easier on tax person.

J. Consultation Appointments: When someone says" Trust me we always get the information there-" DO NOT believe. Walk into any consultation with the informatin that the consultant needs to do their consultation. Saves you from a wasted visit and wasted money. Make a packet from your originals consisting of initial History and physical, last set of doctor notes, xray fims/cd's, labs 6months , genetic studies etc. Remember, I said make a packet, do not expect to get originals back. Big centers don't have time to make copies of your originals.

Story: One time after a 2 1/2 hr drive to a big cancer center. They had nothing. This was after the cancer center guaranteed they were sent. I called the day before to the consultation center, the responding person guaranteed that they had them. I faxed a copy of all the same data myself. Think I was safe, no. The big time specialist opened the file and nothing was there, not asingle piece of paper. BUT I knew this would happen. So, I had made a second package as described as above. Did this when I was preparing the fax that I sent, the day before, with a cover sheet, identifying myself as patient and referring doctor and addresses. I handed the doctor every single piece of data he needed. Then after making my own package, I refiled all my master copies in my carrier or ring binder as applicable. Being able to hand that package to the doctor can get things moving fast. Of course, the ideal would have been for them to have prestudied the data, but I think that falls under magical thinking.

Consultation Visits -follow up to make sure they send their findings. With all they have to do, it can take overlong to get their written report. You may not have the time to loose. Add copy to carry file and ring binder

K. Ledger Book: Record debit/cash payout, as a company uses to see where the money is flowing. Can help if you find grant money. Section by month with sequential household and medical expenses. or separate sections for household and medical.--This sounds good, but I couldn't keep up with it.

L. Social Worker Consultation: Visit to see what services and money etc. you are eligible for at the beginning, i.e right after diagnosis or first treatment. If they ask you questions that you are uncomfortable answering, ask if they are required i.e. mutual funds. Don't be afraid to say that you are uncomfortable. The social worker will inform you what is required and what is not required.

Story: We did not have this type of visit until 1yr 1mos after everything started. We were eligible for all kinds of assistance and missed out. i.e American cancer society will assist with pain medication, but will not cover retroactively. The Lymphoma society will assist and will cover some things retroactively if it's in their calendar year. BCO main board has numbers regarding assistance programs.

M. Notice of meeting copay limit: Watch for the statement on your EOB's that says you have met your copays/deductibles. Have facilities scan it into there systems or copy. Get original back before leaving office. Keep in carry file.

Story: We missed mine by 2 months and my husbands by a month. We then had to recollect from each provider. If it was the reverse, they would have been sending us to a collection agency. Have a copy in your carry binder. Ask them to enter it into there system. This may still not work. Thats why you want to carry a copy that says you have met all copays and deductibles in your carry file.

N. Authorizations: When a company is checking on your copay, and you have meet your copay/deductibles. The question, they need to ask is" HAS THIS PATIENT MEET THEIR COPAYS/DEDUCTBLES". VS WHAT IS THE COPAY". This is a good time to pull out your statement that you have met all copays/deductibles. Obtain authorization number from insurance company before having a procedure done. Otherwise you may get stuck with a big bill.

O. Cancer fax file: You will be faxing the same people all the time. Make a file. Obtain someones form that has the HIPPA privacy statement on it. Black out there company name. Write the name of your contact person, write in big numbers their fax number, your name and phone, then below where all the lines are just put the date your sending and re:X i.e. lab update. I've used the same sheet many times. Saves time /paper/frustration of making out knew form each time. Three and half years later I am still using the same file.

P. Review Accuracy of Medical Information: of all physician history and physicals, and notes. One doctor put in a serious WRONG diagnosis and it took six months to get it corrected. Once they screw up, it's in the computer world and will affect all future contacts.

Q. Mental health: PTSD and depression are a problem of dealing with cancer. Consider working with a therapist early on. Please, don't hesitate on this one. This one didn't hit my radar until I realized both of us were seriously depressed.

R. Self Preservation Care: Get prayer networks going, pamper yourself, exersize as allowed, gather as often as allowed with friends and family. During chemo avoidance of contacts in a reduced immune state is necessary. Keeping contact with close ones will dispel the feelings of required isolation that is for your own safety. Read a lot of jokes, tell alot of stories, try to do the things that make you happy. Many inspirational books available

S. Legal Issues: You will probably need a lawyer to review many of these. There are online sites, but risky if you miss something or don't get it right. The key is to set up every thing as to avoid probate. This is practical. You could pass at anytime from BC or falling down a set of stairs. Avoids chaos.

1. Trusts(should also have a will even if you have a Trust, handles unforseen things not covered in the Will), Wills, Durable Power of Attorney(DPOA), Health Care Surrogate Power of Attorney, Living Will are up to date.

2. Names on bank accounts include spouse. May want to include adult child name. This may be important if you can't do bills yourself. Set up as much as possible in online banking. Downside if someones's sued your assests may be attached to a settlement. Better to be handled by DPOA.

3. Beneficiary designation: Check all insurance policies, banking accounts, mutual funds, checking,savings, money market funds, compushare for beneficiaries are designated per instituition policy

a. Transfer on death TOD

b. Pay on death POD

4. Review Deeds to Property and Assets: house, car, boats etc. and rights of inheritence

5. Safety deposit box:determine signators for access. Location of the keys.

6. Have list that identifies all assests, and a second list of what's in the box. Allows POA/Signator/ Executer to know what assets you have and what's in the box.. Essesntially, works as a checklist.

7. Ma111 's thread an excellent resource " A place to talk to death and dying issues" . It's in Stage IV Forum.The information is universal to all. Preparation is for all. This was the lesson learned from 9/11. Many laws in the USA were changed as a result.

T. Immunizations--As soon as you get the diagnosis and BC plan. ASK about immunizations before chemo/rads------FLU, Pnuemovax, Shingles vaccines. These can't be given in a reduced immune state.

-------------------------------------------

The below link is to MA111's Topic: A place to talk death and dying issues. Pg 25-26 have a synopsis written by BON a BCO member. Being prepared should be considered by all, not just when illness strikes.

http://community.breastcancer.org/forum/8/topic/770023?page=1

This link is to atopic thread "TIPS ON SHOPPINGLIST FOR CHEMO" Great and practical info,very little overlap to this thread--definitely worth a read.

http://community.breastcancer.org/topic_post?forum_id=69&id=706846&page=1

All these statements are from experience, that I won't give more details than I have. I'd be here writing forever. Have faith, have hope, cry and rant when you need to, love alot.

Blessings and prayers - sassy

Life's journey is not to arrive at the grave safely in a well preserved body, but rather to skid in sideways, totally worn out shouting "holy crap....what a ride".
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Feb 19, 2016 10:02PM - edited Feb 19, 2016 10:03PM by Nutmeg9753

What a well- thought out , generous, post. My extremely organized mother would be proud of you. When I show her your advice ... I'll hear it directly. So far, I've covered the beneficiary changes for life insurance, disabiliity ,and all work- related benefits. Final paychecks, leave reimbursement, and retirement, etc. To be sure the money will be divided as I would want it to be. This gave not only myself, but my family , peace of mind. Not an easy subject, but an absolute necessity. I have a lot to do still, and will definitely follow your outline , as a guide. Thank- you for the hard work, and time. You put into this. I've always said, none of us know when " our time " will come. It could be from the cancer -ultimately, or we could step off a sidewalk, and meet an unfortunate end. Or, of course go peacefully in our sleep (my petsonal preference , of course). The diagnosis of cancer , as painful full as it is... does have some benefits, other than the obvious ones. Realizing life is short, enjoy what we have now. Having family, and friends, and even complete strangers offer their support- priceless! And specifically - articles such as yours, that remind us to do what needs to be done. Thank-you, for helping me to be less of a procrastinator. Bye for now. I have to go dance with, and spin my soon-to-be , 2 year-old granddaughter around the living room. Hearing her giggle , will make one of my expanders, the one with seroma , hurt less. May even make my new port for up-coming chemo... feel non-existant. Most-importantly, of course, will be sharing that moment with her, and remembering to try to live , each day, as normally as possible. " I'm coming ,Ariella ." Xo Grandma Megan

MSC Dx 11/18/2015, IDC, Right, 1cm, Stage IIB, Grade 3, 0/9 nodes, ER-/PR-, HER2+ (FISH) Surgery 12/22/2015 Lymph node removal: Right, Sentinel, Underarm/Axillary; Mastectomy: Left, Right; Prophylactic mastectomy; Reconstruction (left): Tissue expander placement
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Feb 19, 2016 11:44PM sas-schatzi wrote:

Grandma Megan you are so sweet. Thanks :)

Life's journey is not to arrive at the grave safely in a well preserved body, but rather to skid in sideways, totally worn out shouting "holy crap....what a ride".
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Mar 30, 2016 06:53AM sas-schatzi wrote:

Bump

Life's journey is not to arrive at the grave safely in a well preserved body, but rather to skid in sideways, totally worn out shouting "holy crap....what a ride".
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Jun 9, 2016 02:48PM sas-schatzi wrote:

Recently someone asked about how to find a thread that you are comfortable with. These were some thoughts

Lurk for awhile to see if someplace you want to be.

Read the topic box. It defines what the original poster wants to accomplish with the thread.

Then pop in with an intro post along the lines of "Hi, Blah, blah".

Write down the page number you left off on. Then when you return you know where to start.

If you feel like memory is an issue, write notes about members. Helps when there are lot's of folks on a thread and it's moving fast.

Use split screen 1. reading screen 2. typing screen. This is my go to way of doing it.

:) sassy

Life's journey is not to arrive at the grave safely in a well preserved body, but rather to skid in sideways, totally worn out shouting "holy crap....what a ride".
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Jun 17, 2016 06:44AM Longtermsurvivor wrote:

When I first moved to bco's forum 8, I asked for directions and the Divine Mrs. M. told me that bco is a country, each forum is like a town and the topics are like neighborhoods. While I haven't wandered far from my own neighborhood and town, I heard from Sas-Schatzi that you might be interested in reading this analogy.

First, using Command-F, I search for a term in All Topics (that's how I find News and Holistic approaches).

But, if nothing pops up, I'll use the search function to find a particular topic.

Yesterday, I wanted to find a topic on breast cancer activism, advocacy, history, culture, media, books, films, etc., but couldn't find the right forum or topic in All Topics.

Finally, I searched for Pink Ribbons, Inc. and found Crazy Town. The enlightened locals directed me to Pinktober Revolution at community.breastcancer.org/for... and I was able to post a news item about the new book by Breast Cancer Action's deceased leader, Barbara Brenner - Think Before You Pink!

Heading back home now, Stephanie

Grateful to be here. Advanced breast cancer for 25 years, engage holistic approaches. Am dealing with ascites and many mets. Am on hospice.
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Jun 20, 2016 06:11AM Longtermsurvivor wrote:

Sometimes we want to find and meet a bco member -

Maybe we like what a member says in a forum or their situation is similar to ours or we want to get a sense of who they are by what they share where and when.

In real time, it's easy to click on a member's avatar - their picture - or their underlined name beneath it.

This will bring you to All TopicsCommunity Member List → Profile for **** where you'll see their # of posts, when they joined and when they last visited. There are sections for Biography, Diagnoses, Treatments and their most Recent Posts.

To see all of their posts, copy and paste their name into a separate Search. Don't try to use your memory in the Search function without an exact screen name - this is a recipe for disaster as there are 173,051 members and one misremembered letter, number, character or space can lead you nowhere quick!

I've had no luck finding members with the Member List. Maybe someone with good luck and skills can explain it?

If there's someone I want to keep track of, I'll often add them as a friend, even if I don't send a Private Message (PM) right away. That way, I've captured their screen name for later use. This works well for members who post infrequently.

Now you know lots about the member. Sooner or later you may want to PM them. If the member is already your friend, just select Private Messages, use the pulldown To menu to find a screen name and write away. Be aware that you won't see the message you sent until or unless the member replies. So, think before you click!

Finding someone from past topics is harder. Try narrowing the search function using Keyword, Forum or Date. With 80 forums and133,943 topics, finding someone or their post again can be a fruitless task. The more focused your search, the better your results.

With a search result, you'll find a list of posts on a topic. You can choose to click on the post title or just click on the member's name.

Do check the date of the member's post and when they last visited. I'm a member of Forum 8 and many of our members have moved on. If curious, I look at their date of last visit. If their trail is cold, copy and paste a member's screen name into Search by Keyword. Perhaps another member has sent an update more recently.

Of course, the easiest way to start a friendship is by getting together at a topic and talking for a while. For privacy or to not tie-up the group topic with side topics, consider PM'ing the member and taking the conversation out of the public forum.

I hope this is helpful.

Sas-Schatzi, be sure to send feedback. And any others with better tips for navigating bco - chime in!

healing regards, Stephanie



Grateful to be here. Advanced breast cancer for 25 years, engage holistic approaches. Am dealing with ascites and many mets. Am on hospice.
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Jun 20, 2016 10:34AM Moderators wrote:

You are all amazing! Longtermsurvivor, this is incredibly helpful. We are thinking we'll add it to the first forum: Info & Resources for New Patients & Members - Please No Posts!.

Also, we just made this topic a "sticky" topic, hoping it stays at the top.


To send a Private Message to the Mods: community.breastcancer.org/mem...
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Jun 20, 2016 11:47AM Longtermsurvivor wrote:

Hey mods,

Glad you think I got it right. Do hope it's helpful for others and fine to post to a wider audience, just credit me (Longtermsuvivor ~ Stephanie).

And add your two cents too.

Surely finding someone on the Member List can't be as difficult as it seems!

Great gratitude for all who participate in bco (even the listeners!) ~ Stephanie

Grateful to be here. Advanced breast cancer for 25 years, engage holistic approaches. Am dealing with ascites and many mets. Am on hospice.
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Jun 21, 2016 06:15PM - edited Jun 21, 2016 06:20PM by sas-schatzi

Stephanie, that's just such great info on finding someone. Been their done that, been so frustrated. Just as you say one something off and the computer doesn't give it too you.

I laughed at myself when you said about " Be aware that you won't see the message you sent until or unless the member replies. So, think before you click!"

After being here 7 years, a friend pointed out the "sent" just a few days ago. I clicked on it .Sheesh. Never saw it in 7 years. The PM had a research link I wanted. Clicked on "sent" and we found the PM.

LOL I did a cut & paste from my own PM site as an example. Then clicked to see connection. Took me to my millions of PM.s Deleted it. Hahahaha

The key to retrieve sents is to click on sent.

Thanks so much for posting LTS, All pearls are appreciated.

Life's journey is not to arrive at the grave safely in a well preserved body, but rather to skid in sideways, totally worn out shouting "holy crap....what a ride".
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Jun 21, 2016 06:37PM sas-schatzi wrote:

LTS Just as the Mods have recognized your post as important. We members can identify a thread that is important. Leah recommended this thread years ago. I was happy. The thread was done during a very tough time. Then it was called "pinning". Threads would have a little yellow push pin next to them. Now there are different symbols.

When BCO reorganized things were changed. JD-GP ended up https://community.breastcancer.org/forum/5/topics/820075?page=1#idx_1

Remember to ask them where they will highlight your thoughts. Of course it will always be here. I'm guessing you have computer skills. I tried a thread but it didn't take off. Methinks you could do way better. I'll link it. BBL with

Okay back

https://community.breastcancer.org/forum/26/topics/826154?page=2#idx_36

The concept was right, but I'm only marginally proficient. Take the concept and see what you can do with it.

Life's journey is not to arrive at the grave safely in a well preserved body, but rather to skid in sideways, totally worn out shouting "holy crap....what a ride".
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Jun 21, 2016 07:05PM Longtermsurvivor wrote:

Sas, you are amazing!

Thank you!

Now I can retrieve my "sent" messages.

Okay, here's something I once did by mistake and can't do again - how do I look at all my friends?

There's the pulldown <send-to> menu in the PM option...but that's names only. I know I saw names with avatars once, but can't find again.

It takes a village to create a well-working, fully-ordered mind. :)

Thanks for helping me to think and find my friends' avatars.

healing regards, Stephanie


Grateful to be here. Advanced breast cancer for 25 years, engage holistic approaches. Am dealing with ascites and many mets. Am on hospice.
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Jun 22, 2016 05:00PM sas-schatzi wrote:

Stephanie Thanks, but oh so funny, I only "saw" the sent when a BCO friend pointed out a few days ago. I've been here 7 years. I too, was frustrated about not having access to sents. What a hoot. After we cleared that up.She said" I always wondered why you asked me to send a post back?" Sheesh.

With friends go to the left menu click on dashboard, scroll down to friends. Wahlah. You should see it.

Life's journey is not to arrive at the grave safely in a well preserved body, but rather to skid in sideways, totally worn out shouting "holy crap....what a ride".
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Jun 22, 2016 06:56PM Longtermsurvivor wrote:

Oh my goodness gracious!

There my friends are on the dashboard!

Thanks so much Sas!

warmly, Stephanie

Grateful to be here. Advanced breast cancer for 25 years, engage holistic approaches. Am dealing with ascites and many mets. Am on hospice.
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Jun 22, 2016 08:54PM sas-schatzi wrote:

LTS :) SAS

Life's journey is not to arrive at the grave safely in a well preserved body, but rather to skid in sideways, totally worn out shouting "holy crap....what a ride".
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Aug 14, 2016 10:20PM sas-schatzi wrote:

On a mission regarding bladder control hope I don't get banned b/c of spamming. Love ya'll

Repost from Warm and Fuzzies. not appropriate to the site , but there were a couple of bladder leaking meme's. But this is a serious story has to do with the funny one about bladder leaking. All the docs will tell you about kegels. WELL, I inadvertently found a solution if you are a swimmer.

There is a swim stroke that I can't find the name for which I learned as a kid. It's meant to be a stroke to reserve energy if lost in the water and have to swim a long distance. I have been using it more frequently b/c I had a shoulder injury and was working the deltoids.

LOANDBEHOLD. The stroke increases bladder control. Takes maybe 2-4 weeks, but dependent I'm thinking on how often you use the stroke. I vary 3 strokes for particular reasons. Then I noticed better bladder control.

It's a back stroke. You bring up the arms from the side to the top. At the same time you bring up the legs in a frog position. Then you snap them down and glide. I kept working the movement harder, to get the work out of the deltoids. Then TADA, head slap moment, I noticed I didn't have the run for the bathroom after the pool or the hitting of the air conditioning. It was AMAZING. I know this isn't a funny on a funny page, but I'm posting this in as many places as I can. So, hahahaha. Leaking is no fun hope it helps, spread the word.

Life's journey is not to arrive at the grave safely in a well preserved body, but rather to skid in sideways, totally worn out shouting "holy crap....what a ride".
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Sep 6, 2016 04:44AM cp418 wrote:

http://www.mybreastcancercoach.org/

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Sep 17, 2016 04:24AM Jazzygirl wrote:

Hello friends- Sassy asked me to post something about BCO and why this site is an important resource to women, especially for you that are recently diagnosed, but for some of us who are a bit down the road on this stuff. So here we go.

I was diagnosed in the fall of 2012, had lumpectomies and internal radiation. By the spring of 2013, I was through the majority of treatment and started the aromatase inhibitor medications that often follow on for those of us who are estrogen positive with our tumors. That was also a good six month adjustment due to side effects to those medications. It took a long time to really feel better from everything, and that is to not discourage you, but so you can be patient with yourself not only as you go through treatment but during the recovery process. It is okay to let folks know you won't be bouncing back like you had the flu or something. And yes, some people do seem to expect that.

I will share some interesting parallels between two things I have gone through in life; the experience around a major loss of a family member and related grief process, and then when I got my cancer dx (and a whole lot of other bad things as mentioned previously). What I have noticed there seems to be a general time table on things like grief or recovery from cancer treatment by others, and have always found that to be very odd. I have never been one who appreciates being told how to feel about things by others or for how long.

At age 32 (I am now 56), I had an older brother who became ill with a rare lung disease and whom passed at age 40. We were very close and it turned my world upside down, along with the rest of the family. It took me a long time (maybe the rest of my 30's) to really heal from that loss. With time and grief counseling, I found my way through and even to live life a bit more purposefully. There were comments during this period about that loss, getting on with things, over it, etc. I learned then that people were not interested in dealing with my pain for very long. With time, many of them were in similar situations with the loss of someone they cared about and later commented how they never understood what I was going through until it happened to them. Sometimes people just cannot relate, get scared, or just lack of empathy for others suffering. Most people mean well, but many people are able to understand all we go through.

With cancer treatment, I felt a lot of the same thing, except instead of it just being an emotional wound, there were the physical ones too. We end up with physical and emotional scars, some which the world will never see but that we live with. Never mind the longer term SEs from the treatments we go through. Recovering from cancer treatment takes years, it has for me. We are not the same after, just as you are not after the loss of a loved one; we are forever changed, lives take on a different focus. But yet, there is a time table that seems to show up in these situations too. And again, I think that is odd.

The reason many of us came here to BCO is that it initially met a need each of us had for support during diagnosis and treatment. And for those of us that remain, it continues to meet a longer term need as we work our way into a new normal. We have a community here that is a resource for women both short term and long term. We like to help our sisters who are newly diagnosed in the ways many here helped us, to be with those living with cancer through their Stage IV diagnosis, and sometimes to just talk about things that matter to us. We are here because this is a place that provides us support without a time table. Coming here is so refreshing to me in a world that is filled with "aren't you done with that yet?"

There are so many great threads here for each stage you go through from the tests right after diagnosis, through treatment decisions, how to deal with the relationships around you, questions around insurance and financing cancer treatment and more. There are also places where people don't talk about cancer, but have a place to talk about other things. Gardening threads, quilting threads, animal threads, and more. So take a look around and find what helps you most. Many of us are on some threads for awhile during treatment, other places we stay for the longer term. I like to let folks know when I need to leave or will be gone for awhile for any reason. We worry about each other here, like to check in on each other to make sure folks are doing okay. Our friend Sassy is a great one for making sure we are all doing okay!

We are sorry you find yourself here, but you have also landed in a great spot for much support during difficult times. We wish you the best on your journey through treatment and back to wellness.

Dx 9/14/2012, DCIS, 1cm, Stage 0, Grade 1, 0/1 nodes, ER+/PR+, HER2- Dx 9/14/2012, IDC, <1cm, Stage IA, Grade 1, 0/1 nodes, ER+/PR+, HER2-
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Sep 18, 2016 08:42AM sas-schatzi wrote:

Thank you Jazzy, your words are masterful :) Bless you.

Life's journey is not to arrive at the grave safely in a well preserved body, but rather to skid in sideways, totally worn out shouting "holy crap....what a ride".
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Oct 13, 2016 11:35PM Sophiem wrote:

I just got diagnosed today. I feel devastated.

Sophie
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Oct 14, 2016 03:03AM joyandpiece wrote:

Sophiem, I'm so sorry that you have joined this club. I'm also so happy that you have found this site. It is full of great information and a community of sisters that have been there and can offer great support.

I think we would all say that the beginning and the waiting for all tests results and treatment plans to fall into place is the hardest. Until that happens, arm yourself with knowledge from trusted sites like this, stay off of Dr. Google, and keep reaching out here.

<<hugs>>

"You are your own best advocate!" Age 47 at Dx Dx 8/26/2016, DCIS/IDC, Left, <1cm, Stage IA, 0/5 nodes, ER+/PR-, HER2+ (IHC) Surgery 10/4/2016 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 11/17/2016 Whole-breast: Breast Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Oct 14, 2016 03:18AM joyandpiece wrote:

Sophiem, I would also encourage you to start your own thread. It will be more likely to be seen.This particular thread may not get as much traffic.

"You are your own best advocate!" Age 47 at Dx Dx 8/26/2016, DCIS/IDC, Left, <1cm, Stage IA, 0/5 nodes, ER+/PR-, HER2+ (IHC) Surgery 10/4/2016 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 11/17/2016 Whole-breast: Breast Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Feb 24, 2017 11:26PM Bobby1122 wrote:

We were just told today my wife has Breast cancer after a rountine mammogram and biopsy test 2 days ago..we dont have an oncologist yet, just starting process. This list is helpful thanks.

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Mar 26, 2017 01:56PM Meredith123 wrote:

hi!

My ex husband just called me, we have not spoken in one yr! We have 2 children together. He told me that his wife has triple negative metaplastic carcinoma

She is 50. We are not fond of each other and all of a sudden I'm in this chat room online researching

I just signed my daughter and I up for the susan Koman

Walk. This is what I do.

I have reached out to her but I will let her call m



Meredith
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Mar 26, 2017 01:57PM Meredith123 wrote:

does anyone have any suggestion she has kaiser

But does not want to be treated at kaiser

Meredith
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Mar 31, 2017 02:52PM sas-schatzi wrote:

Hi Meredith, Sorry you are going through this, and on top of it the unusual thing of the family scenario. If her insurance is Kaiser, she may have more likely definitely will have problems with insurance coverage for treatment if she is not treated "In-Network". Out-of-Network charges are generally very steep or not covered. Suggest that she talk with her insurance company.

There is a Triple Negative thread. Check the forums for the link. Good Luck.

Life's journey is not to arrive at the grave safely in a well preserved body, but rather to skid in sideways, totally worn out shouting "holy crap....what a ride".
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Apr 17, 2017 01:07AM - edited Apr 17, 2017 01:07AM by dimetriamajor1

Hello,

I'm new to this diagnosis, I'm scare and angry because I go every year to get a mammogram to prevent this from happen, but I know that mammogram do not catch a small portion, but my cancer was 4.0 CM in front of my breast and the breast ultra or mammogram did not catch it because the machine was out dated and needed updated software. Maybe if I had a chance to get this disease in the early stages, I could have saved my breast from being removed immediately. I'm in pain all the time and very numb, I'm on hormone therapy, but scare of chemo or radiation, need help to cope.

Dx 12/16/2016, LCIS/ILC, Left, 4cm, Stage IIIA, Grade 2, 11/12 nodes, HER2- Surgery 3/31/2017 Lymph node removal: Underarm/Axillary Surgery 3/31/2017 Lymph node removal: Left; Mastectomy: Left Chemotherapy 4/28/2017 Carboplatin (Paraplatin), Taxol (paclitaxel), Taxotere (docetaxel) Hormonal Therapy Arimidex (anastrozole)
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Apr 18, 2017 01:06AM - edited Apr 18, 2017 01:14AM by sas-schatzi

Diametri, So sorry for everything you are going through. You have expressed lot's of feelings here. The consideration that better equipment can make you crazy. If the staff said that the machine was outdated, and you were only told of it after. That could be a legal problem. Attempt a legal consultation.

Check the forums for the particular hormone that you are on. Each of the hormone drugs have their own nastiness. Women on that particular forum are the best to consult and commiserate with. They can help you cope with what's going on too.

What drugs do they recommend for chemo. They're are general chemo groups and specific chemo groups. I suggest joining both. They're is also a Radiation group. It's a whole different thing to deal with. Talking with folks that have direct knowledge of rads is a good thing to do.

Where are you being treated at?

Are you getting breast reconstruction?

Coping, is prayer in your belief system? I couldn't have survived without it, but it is not everyone's way.

Please, go back and read from the beginning of this thread. Some is repetitive. As you go along you will be able to slide by the repetitive.

You want to talk with someone now. Their is a thread I can direct you too that may help.

This link is to a thread where many newbies(you are a newbie) go for support

https://community.breastcancer.org/forum/84/topics/833500?page=236#idx_7059


Life's journey is not to arrive at the grave safely in a well preserved body, but rather to skid in sideways, totally worn out shouting "holy crap....what a ride".
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Apr 18, 2017 03:02AM dimetriamajor1 wrote:

thank you I just needed to get somethings out, I have not even did chemo yet and just have one hormone therapy medication Im doing so I needed someone to reply back and you did.

Dx 12/16/2016, LCIS/ILC, Left, 4cm, Stage IIIA, Grade 2, 11/12 nodes, HER2- Surgery 3/31/2017 Lymph node removal: Underarm/Axillary Surgery 3/31/2017 Lymph node removal: Left; Mastectomy: Left Chemotherapy 4/28/2017 Carboplatin (Paraplatin), Taxol (paclitaxel), Taxotere (docetaxel) Hormonal Therapy Arimidex (anastrozole)
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May 2, 2017 08:25PM sas-schatzi wrote:

bump

Life's journey is not to arrive at the grave safely in a well preserved body, but rather to skid in sideways, totally worn out shouting "holy crap....what a ride".
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May 19, 2017 08:40AM sas-schatzi wrote:

Bump

Life's journey is not to arrive at the grave safely in a well preserved body, but rather to skid in sideways, totally worn out shouting "holy crap....what a ride".

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