just diagnosed, start chemo this Thursday

First off, your decision to get a port is a good one. Mine made chemo so much easier to deal with. It is a nuisance... but better than the alternative epescially if you have small veins.

Second, try to get a friend or family member to go with you the next time you go to the Onc. It is really hard to get all the information that they give to you early on. It is so much better if you have a couple of extra ears to help you hear and understand what is being said.

Once you get a better understanding of your diagnois bring it here, then people can give you more specific advice.

If you are starting on A/C, then 1) go get a wig now unless you like hats better. You will loose your hair... it's not a maybe. Typically it happens within 2-3 weeks of starting A/C. Once you start A/C typically on day 3-6 you will feel pretty rotten. Nausea... but it is tolerable. Eat what feels good to you. Don't worry about eating specific things.. I found that your body will let you know what it wants. My Mom would try to buy groceries for me to help out and she just didn't understand that it really was easier for me to drop by and pick up what I wanted because from day to day and week to week the types of food I wanted changed.

Drink lots of water on your treatment day and for 2-3 days afterward. Keep a good attitude... try to laugh.... keep perspective... and know that you are walking down a path that many of us have walked. We have faced the beast and won...

Take Care.... God Bless...

Susan

Susan956 said:

First off, your decision to get a port is a good one. Mine made chemo so much easier to deal with. It is a nuisance... but better than the alternative epescially if you have small veins.

Second, try to get a friend or family member to go with you the next time you go to the Onc. It is really hard to get all the information that they give to you early on. It is so much better if you have a couple of extra ears to help you hear and understand what is being said.

Once you get a better understanding of your diagnois bring it here, then people can give you more specific advice.

If you are starting on A/C, then 1) go get a wig now unless you like hats better. You will loose your hair... it's not a maybe. Typically it happens within 2-3 weeks of starting A/C. Once you start A/C typically on day 3-6 you will feel pretty rotten. Nausea... but it is tolerable. Eat what feels good to you. Don't worry about eating specific things.. I found that your body will let you know what it wants. My Mom would try to buy groceries for me to help out and she just didn't understand that it really was easier for me to drop by and pick up what I wanted because from day to day and week to week the types of food I wanted changed.

Drink lots of water on your treatment day and for 2-3 days afterward. Keep a good attitude... try to laugh.... keep perspective... and know that you are walking down a path that many of us have walked. We have faced the beast and won...

Take Care.... God Bless...

Susan

Not only is a port a good idea if you have small veins, but also because of your strong dislike for needles.

Two pairs of ears are definately better than just yours, it's just too much to take in. Another trick I learned, because I was told to, was have a pen and paper w/you always, even at your bedside table, to write down all the questions you think of and are sure you'll remember, but won't. My list would be sticking out of whatever book I was reading at the time and my surgeon would 1st take and inspect the book I was reading(too funny), and then pull my list out and start answering all my questions.

The other thing I wish I did was get my hair cut really short and then on the 16tnh day(he told me it would start to happen exactly on that day), after the 1st treatment wear a ski hat or some hat to bed so the hair would be all in the hat and not all over the bed.

Try and find out where you can get a wig from all those people who donate their hair for same by cutting it all off.

I craved water(something I never drank before) and O.J. My appetite went fairly quickly, I couldn't handle ANYTHING w/salt in it. And was shocked to discover how many things had salt hidden in it, unreal!

Don't be afraid to ask for help, it is not a sign of weakness and people love to be able to do something for you.
The chemo may be surprisingly less debilitating than you're anticipating. I know women who worked throughout the whole thing, God Bless them, I could never have done that, but there you go, everyone is truly different and has different response's to any and all of these treatments, but I am sure you will find someone or several in here who have had the reactions you will and can support you as you go through this.

Everyone here gives amazing support to each other.
So, join our club. We want you to share with us all your happiness and angst.

Your attitude is very important through all of this and you seem to have that already, so here's to that and laughter, and love,
Prayers and ((((((HUGS)))))), Kathy

Tammy,
Well, so much good advice, there is nothing much left for me to add....

One BIG thing....keep in mind, this is TEMPORARY. It WILL be over. Make sure to treat your body well...no 'all-nighters' parties or such. Get lots of rest, let people around you help.

DEFINATLY take someone WITH you to ALL doc visits...chemo gives us survivors a selective loss of hearing, especially at the oncologist's office!...rofl

Also, chemo use is relatively new for DCIS...it WOULD be interesting to ask another doc...unless you feel very comfortable with your current one. That said, I was Stage II, so there was no choice...node involvement, well.....

I drank 2 quarts of water the day before, the day of, and the day after infusion. I felt very good on the day after...it was the following day evening and then the next day after that that was tough. But, then the day after THAT, I was back to normal, and REALLY loaded up on the low-fat protein (Turkey sandwiches were my favorite).

Welcome to the family!

Hugs, Kathi

And I know as you to help! Do not think, I not the madman. I as well as you was sick of a cancer of lungs. I was long treated in dear clinics, but nothing helped. I have despaired and going to die. But the my dear daughter has learned about the person who treats a cancer, medicinal grasses. It has contacted it and has asked than it can help in the circumstances. To us have answered, that a cancer we shall cure and it is just necessary to carry out instructions. I at once have thought, that my daughter deceive what to receive money. There is a treatment of 110 000 dollars. And I have not given money of my daughter and would tell that it did not contact which people at all did not see. But my daughter has disobeyed me and has taken the loan in bank and has paid the necessary sum. In a week we have by mail received a small package. In it there was some kg of the dried plants, crystals of salts and the detailed instruction on preparation of medicines. I was malicious on the daughter, but understood, that it does it of love to me. And I have started to accept a medicine. Also there was my surprise - I have felt better! I have recovered in a month. My lungs became similar to lungs of the baby, and I smoked 35 years. Doctors who have told, that I shall die, have been surprised by my healing. They have told are a miracle. But since then has passed 6 years. And this miracle has occured to many people to whom I have advised to write the letter and to ask the help for the unusual doctor. On my eyes have been cured 28 person with various forms of a cancer. All of them have paid the various sums of money. From 40 000 up to 150 000 dollars. To one little girl, all was free-of-charge.
I as know, that many very known people used these medicines. Many people do not trust me, but I have gone through all, and I approve, that miracles happen. And I give a guarantee to people who doubt of my words, that they will recover. Now I alive and healthy! Both I am happy! And I wish your of good luck and health, and please do not despair, simply strictly carry out instructions. I guarantee to you, that with you all will be good.
I wish you healing and I ask - address for the help to this email- weter09@yahoo.com

Forgive my bad English.

Yours faithfully Dok Manomah.

Trying to Understand overload of information

Hi,

I have been diagnosed with DCIS Stage II/III, Intermediate nuclear grade.  I am a nurse but am a NICU nurse so I am in way over my head.  We were inudated with information and both my husband and I were overwhelmed.  I want to read something that will help order my normal scientific mind that has suddenly fled.  Everything I've read says DCIS is completely treated with a low remission rate.  My husband is useless in remembering the information.  Too many new words and abbreviations.  I ended up not knowing what questions to ask.  My oncologist is starting me out on Chemo.  I have looked at all the protocols and they only list readiation therapy and mastectomy of breast sparing surgery.  The sequence will be chemo, then surgery, then radiation.  One lymph node is involved that we know of.  I am going to have a Pet Scan and a port put in on July 8.   My Her2 was Neg. Estrogen ER positive.  What kind of an outcome am I looking at.  Can someone put this is perspective for me.  I would appreciate any information you can share about your experiences.

Teach76 said:

Welcome and sharing my experience

Hi there,

    Welcome to our little community!  You will find great information and support here.  It will be helpful moving forward if you are specific with treatment questions and include information such as drugs for chemo, etc.  But you are not to that point yet.

     First of all, breathe!  Being in the medical profession yourself, you understand that information can be so overwhelming at first - I assure you, by the time you are on your second chemo treatment you will have absorbed and processed the information that you need.  My suggestion to you is to take the entire treatment plan in small steps.

     Finding out about your exact diagnosis is a great way to start.  DCIS is very treatable.  It means that your cancer started in a milk duct, and may not have spread into healthy tissue.  The grade of 2 or 3 tells you a little more about the nature of your tumor.  Your treatment plan is the way your team feels that you will best respond.

     The PET scan will allow the team to see where the cancer is - has it spread to the nodes or other organs?  

     I will tell you that the WAITING is the absolute worst part of treatment.  We want answers right now, results immediately.  Unfortunately, these things take time.

     Your treatment is similar to mine . . .

      I was diagnosed last June with IDC ( invasive ductal carcinoma).  Grade 3 (aggressive, unusually shaped tumor), stage 2 (  affected surrounding tissue but did not spread anywhere else in the body ).  The tumor was E+ which meant that it fed on estrogen, P-/+ progesterone was borderline! and HERS2-.  I had chemo from July to November every 3 weeks, then a partial mastectomy in March (I had some complications post chemo that caused a few delays), and I am currently finishing radiation ( 16 of 25 rounds done!). In retrospect, I was glad to have this plan.  I felt I was very healthy going into chemo, allowing me to be strong through the treatments.

 

     When I was first diagnosed I also knew nothing about this disease.  My Dad had colorectal cancer, refused treatment, and no one else that I personally knew had experienced breast cancer.  I think once the initial SHOCK wears off you will be able to wrap your head around the information.  Ask questions, write things down, and again, just take one step at a time.

     You will find a wealth of information on the internet and on this wonderful site as well.  Just keep in mind, and you will hear this often, that each person reacts differently to treatments, and while our experiences are similar, that does not mean that everything that happens to one "pink sister" happens to all.  If there is a nurse navigator associated with your cancer center, please use her as a reference.  I found mine to be able to answer questions or direct me to the right office.  She also assisted with paperwork I needed for my job.

     I wish you an informed beginning on your treatment plan, and please visit us often!

Peace,

Kathy

 

 

 

Thanks

Kathy,

Thanks for the reminder to breathe.  I felt like there was a ping pong ball in my head.  Just reading ur experience helped plus I found a book on Amazon DCIS Taking Control of ur treatment.  I am a firm believe that if u r not in charge of ur health care no one is.  So the book is allowing me some control over the decision making process.  I also believe there is no point in hiring an expert and not following their recommendations.  So I have calmed down quite a bit.  Now to follow ur suggestion one step at a time.

 

 

Esperanza744 said:

Trying to Understand overload of information

Hi,

I have been diagnosed with DCIS Stage II/III, Intermediate nuclear grade.  I am a nurse but am a NICU nurse so I am in way over my head.  We were inudated with information and both my husband and I were overwhelmed.  I want to read something that will help order my normal scientific mind that has suddenly fled.  Everything I've read says DCIS is completely treated with a low remission rate.  My husband is useless in remembering the information.  Too many new words and abbreviations.  I ended up not knowing what questions to ask.  My oncologist is starting me out on Chemo.  I have looked at all the protocols and they only list readiation therapy and mastectomy of breast sparing surgery.  The sequence will be chemo, then surgery, then radiation.  One lymph node is involved that we know of.  I am going to have a Pet Scan and a port put in on July 8.   My Her2 was Neg. Estrogen ER positive.  What kind of an outcome am I looking at.  Can someone put this is perspective for me.  I would appreciate any information you can share about your experiences.

Hi.PURE DCIS is ONLY stage 0.

Hi.PURE DCIS is ONLY stage 0. Any stage higher is a different kind of cancer. I am assuming you must have IDC if you are stage 2/3 and have lymph node involvement. When a person has Stage 0, DCIS, and another higher staged cancer, such as your Stage 2/3, the higher stage cancer will dictate the main course of treatment. You may want to ask for clarification on this from your oncologist. It is important to know the kinds of cancer you have.

Hi I'm new to this.

I found lump in Dec 2015. I'd missed my mammogram in Nov. I'm 45 yrs old and a mom of 6. My youngest two are 10 & 7 they are autistic due to lead . I showed the lump which was smaller than a pea to my primary dr. He knows that I try to be healthy. So he sent me to get an ultrasound mammogram. Now it was  masses this is in March. I was sent to an oncologist who recommended a mastectomy. I requested a double. I wanted no chance of it returning with raising special needs children who have to have structure. So my eldest daughter moved in. My mastectomy was done on May 18 th. Due to my blood sugar I was only given a single the left. I had invasive ductal carcinoma stage 2 with 3 nodes removed. During this I also had an expander put in. My chemo was yesterday I was on my period. It stopped? Also told that my left breast is growing tissue my plastic surgeon tried to drain it wasn't fluid. I'm at a loss because I  thought that it may have been fluid because of the loss of the nodes. Now every 2 weeks until Sept I get chemo then 4cycles of radiation all because my ovaries think and show like they are 19yrs old. I had double periods in November,December,January and February. That's why I missed my gyn appointments. Lo and behold those extra hormones developed into breast cancer. Now that even after this is done I may have to repeat on the right.Plastic surgeon wants to just put a implant in my right side to even them out again. If my hormones are the culprit why not remove the tissue from the right side too. I was completely healed in less than a month including getting put under for the port. Any suggestions or should I just push for the second mastectomy and expander now. Because I could wait have the tissue removed then implant. Just rambling now. Well even after that I will have to go thru hormone therapy.