newly diagnosed

bevaschia

HI, I'm Bev.  I was diagnosed on the 13th of this month.  Grade 3 aggressive ER/PR/HER2-neu positive of the right breast.  Start chemo on Friday.  Have chest port placed tomorrow.  Have had pain on my right side chest area for a while, but no one seems concerned with it.  Will have (I am assuming) tomorrow a chest x ray.  How can I be sure the breast cancer has not come from elsewhere?  I have smoked for 30 years.  I just feel as if a pet scan or something should have already occurred.  Opinions?

Puffin2014

welcome to the site

Just a guess, but since the cancer is ER/PR/HER positive that could be what's telling the Dr that the breast is the primary. I don't know that lung cancer would be fed by estrogen. Ask your Dr why he isn't concerned about the pain on your right side and when is a PET scan indicated. I also tell all newly diagnosed to ask their doctors if it's OK to record your appointments to listen to later as they cover so much so fast. I just use the voice recorder on my iPod and all my doctors were OK with my recording.

coral2015

I think you should voice your

I think you should voice your concerns to your doctor, after all they are there to help. Before my port was placed on my chest i got and MRI and pet scan done; doctor wanted to make sure there was no cancer any where else. I also got a heart ultrasound, to make sure my heart was able to stand the chemo and later on a liver scan since chemo can damage it, and genetic test. sometimes we feel so overwhelmed with all the information we are getting that we forget that doctors are there to answer our questions and address our concerns. Insurances also play a big roll on when a Doctor order certain tests or scans (It took 2 weeks for my insurance to approved my PET scan). Im sorry you are going through this, is very overwhelming all the things happening around us before, during and after treatment, but stay strong you will get through it... wishing you the best, Adriana

Kats2

coral2015 said:

I think you should voice your

I think you should voice your concerns to your doctor, after all they are there to help. Before my port was placed on my chest i got and MRI and pet scan done; doctor wanted to make sure there was no cancer any where else. I also got a heart ultrasound, to make sure my heart was able to stand the chemo and later on a liver scan since chemo can damage it, and genetic test. sometimes we feel so overwhelmed with all the information we are getting that we forget that doctors are there to answer our questions and address our concerns. Insurances also play a big roll on when a Doctor order certain tests or scans (It took 2 weeks for my insurance to approved my PET scan). Im sorry you are going through this, is very overwhelming all the things happening around us before, during and after treatment, but stay strong you will get through it... wishing you the best, Adriana

Ask more questions......

Hi Coral.....I would ask the doctor for a CT scan and MRI to check things out further.....See what he says.....A PET scan is more expensive than a CT scan.....but the CT scan shows quite a lot.....and the MRI would just confirm what's what with you.......

In my case, I had x-rays first, then a CT scan, and then MRI which was recommended in the radiologist's report.....All showed that I had a problem.......My breast cancer had originally been treated with a lumpectomy and radiation followed by Arimidex.....but 17 months later it showed up in my bones......A bone scan had NEVER been done.....and I'm not very happy about that.......! I guess they don't do those unless the patient complains about bone pain......I'm now with an excellent oncologist and so far am doing well......Of course there are side effects to the medicine I'm on, but overall I'm not complaining.......

 

Sounds like you need more imaging......I hope your insurance isn't holding things up........Ask questions, seek a second opinion if you're unsure of what direction to go.( your insurance will cover that...).....You have to be your own best advocate......!!!! Good luck to you......I'll keep you in my prayers. It's a scary thing to go through, but I feel that you're strong......you'll get through it.........Keep us posted........  Kats2

GlowMore

Hello Bev

Sincerely hope that your Port Placement went ok today....that port is a wonderful thing and helps a lot during chemo....and even later with the many blood tests we have to endure.

All the other ladies have given you many good ideas here and we have all had different things happen in different ways.  Mine was a lump which I found myself followed by a biop then port implant then lumpectomy/chemo/radiation and many many scans.  I didn't get my PET Scans until much later when they were looking hard to see if it was coming back.

If you are happy with your Oncologist and your Surgeon that is a good thing.  I didn't care for my first Onc on a gut level...so I called and asked for another one and loved him for years and years....and the rascal decided to retire in 2014...doggone it.  My BC is different than yours...as mine was IDC Triple Negative Stage 3B.......but I'm still here my dear and it has been 13 years now.   Puffin's advice about recording your sessions with the doctors is an excellent idea...or maybe if you cant do that...take someone with you to help you take notes.  Ask questions...be your own advocate...learn all you can....  Please keep posting and let us know hows you are doing.  We are all here for you.  Sending Prayers for Strength and Courage.  Glo

 

 

bevaschia

Puffin2014 said:

welcome to the site

Just a guess, but since the cancer is ER/PR/HER positive that could be what's telling the Dr that the breast is the primary. I don't know that lung cancer would be fed by estrogen. Ask your Dr why he isn't concerned about the pain on your right side and when is a PET scan indicated. I also tell all newly diagnosed to ask their doctors if it's OK to record your appointments to listen to later as they cover so much so fast. I just use the voice recorder on my iPod and all my doctors were OK with my recording.

Thank you!  The port

Thank you!  The port placement went well and the chest x-ray the surgeon said was clear.  I will ask the oncologist on Friday at my first chemo appointment all the info everyone has suggested here.  Sometimes I think the right side/almost rib type pain is due to stress, but I will definitely ask more questions.  Thank you everyone for your kind words and support.  I'm not looking forward to chemo, but I want it flowing through me now so I can begin to feel as if something is attacking the cancer.  I discovered the mass during a self breast exam.  One month it was not there, and the next month (early July) it was.

 

bevaschia

GlowMore said:

Hello Bev

Sincerely hope that your Port Placement went ok today....that port is a wonderful thing and helps a lot during chemo....and even later with the many blood tests we have to endure.

All the other ladies have given you many good ideas here and we have all had different things happen in different ways.  Mine was a lump which I found myself followed by a biop then port implant then lumpectomy/chemo/radiation and many many scans.  I didn't get my PET Scans until much later when they were looking hard to see if it was coming back.

If you are happy with your Oncologist and your Surgeon that is a good thing.  I didn't care for my first Onc on a gut level...so I called and asked for another one and loved him for years and years....and the rascal decided to retire in 2014...doggone it.  My BC is different than yours...as mine was IDC Triple Negative Stage 3B.......but I'm still here my dear and it has been 13 years now.   Puffin's advice about recording your sessions with the doctors is an excellent idea...or maybe if you cant do that...take someone with you to help you take notes.  Ask questions...be your own advocate...learn all you can....  Please keep posting and let us know hows you are doing.  We are all here for you.  Sending Prayers for Strength and Courage.  Glo

 

 

I should also add I have had

I should also add I have had the breast ultrasound and breast MRI.  BOTH tests came back as not breaching the chest wall and I am told the armpit lymph nodes do not look swollen indicating cancer has not invaded them.  Also had echocardiogram to be cleared for chemo.  That also came back with good results.

 

bevaschia

GlowMore said:

Hello Bev

Sincerely hope that your Port Placement went ok today....that port is a wonderful thing and helps a lot during chemo....and even later with the many blood tests we have to endure.

All the other ladies have given you many good ideas here and we have all had different things happen in different ways.  Mine was a lump which I found myself followed by a biop then port implant then lumpectomy/chemo/radiation and many many scans.  I didn't get my PET Scans until much later when they were looking hard to see if it was coming back.

If you are happy with your Oncologist and your Surgeon that is a good thing.  I didn't care for my first Onc on a gut level...so I called and asked for another one and loved him for years and years....and the rascal decided to retire in 2014...doggone it.  My BC is different than yours...as mine was IDC Triple Negative Stage 3B.......but I'm still here my dear and it has been 13 years now.   Puffin's advice about recording your sessions with the doctors is an excellent idea...or maybe if you cant do that...take someone with you to help you take notes.  Ask questions...be your own advocate...learn all you can....  Please keep posting and let us know hows you are doing.  We are all here for you.  Sending Prayers for Strength and Courage.  Glo

 

 

Thank you, Glo!  So glad you

Thank you, Glo!  So glad you are still doing well and are keeping a positive attitude.  I'm trying hard to.  It's such a frightful time, but I'm hanging in there!  I start chemo Friday.  I'm anxious about that and the unknown of how I will react to it, but I have a wonderful support system through family, friends, and one the people on this site.  :-)

Double Whammy

bevaschia said:

Thank you, Glo!  So glad you

Thank you, Glo!  So glad you are still doing well and are keeping a positive attitude.  I'm trying hard to.  It's such a frightful time, but I'm hanging in there!  I start chemo Friday.  I'm anxious about that and the unknown of how I will react to it, but I have a wonderful support system through family, friends, and one the people on this site.  :-)

I have never been scanned

I don't think scans are ordered unless something is suspected - like if the patient reports pain (you have) or some other test is off which requires further investigation.  It sounds like you have an aggressive form of breast cancer (triple positive) in spite of everytihing indicating it's early stage.  If you're uncomfortable with not having more scans, then simply ask why not.  Oncologists are usually very happy to share their philosophy with you.  If you're not happy with their explanation, get another opinion. 

As far as knowing it's breast cancer and not a metastasis from another site, most cancers do not metastasize TO the breast.  They like to go to many other places, but not usually TO the breast.  When the pathologist looked at the tissue obtained from your biopsy,  s/he could tell that they were looking at breast cells (either ductal or lobular which they can also tell).  

Good luck as you start your treatments.  I have never had a scan (diagnosed in 2010) and initially I wondered why, but I never asked.  I do think insurance restrictions play a role here, and unless the physician can justify ordering one (like saying they have a reason to suspect something), they don't do it and I don't think it is considered "standard of care" for stage 1 node negative disease.  Five years of no scans, and I'm still fine.  I do still have a breast MRI yearly in addition to mammogram, but only my breasts are imaged.   

This is indeed a frightening experience.  I hope you keep connected with this group.  They helped me a lot.

Suzanne

Kats2

Scans.....

Hi Bev.....Seeing as you have an aggressive breast cancer, Stage 3,  I personally believe that you need more imaging as in scans......CT, MRI, maybe bone scan......You need to ask why this isn't being done for you....and I sure hope it's not because of insurance....!!! My sister had Stage 1 IDC and she had a bone scan before her surgery.....no CT scan though....Different doctors do different things....but there are standards out there and I think if you consulted the ACS you'd find out what tests should be carried out for you......Also I still would definitely get a 2nd opinion from a doctor who specializes strictly in breast cancer.........It's your life.......and we only have one to live.....Speak up.....God Bless.......Kats 2

bevaschia

Double Whammy said:

I have never been scanned

I don't think scans are ordered unless something is suspected - like if the patient reports pain (you have) or some other test is off which requires further investigation.  It sounds like you have an aggressive form of breast cancer (triple positive) in spite of everytihing indicating it's early stage.  If you're uncomfortable with not having more scans, then simply ask why not.  Oncologists are usually very happy to share their philosophy with you.  If you're not happy with their explanation, get another opinion. 

As far as knowing it's breast cancer and not a metastasis from another site, most cancers do not metastasize TO the breast.  They like to go to many other places, but not usually TO the breast.  When the pathologist looked at the tissue obtained from your biopsy,  s/he could tell that they were looking at breast cells (either ductal or lobular which they can also tell).  

Good luck as you start your treatments.  I have never had a scan (diagnosed in 2010) and initially I wondered why, but I never asked.  I do think insurance restrictions play a role here, and unless the physician can justify ordering one (like saying they have a reason to suspect something), they don't do it and I don't think it is considered "standard of care" for stage 1 node negative disease.  Five years of no scans, and I'm still fine.  I do still have a breast MRI yearly in addition to mammogram, but only my breasts are imaged.   

This is indeed a frightening experience.  I hope you keep connected with this group.  They helped me a lot.

Suzanne

Thank you so much.  I see the

Thank you so much.  I see the oncologist first thing Monday morning for the first chemo.  I will definitely ask why a scan has not been done yet.  I guess I thought having triple positive was better than being triple negative or double pos/single neg.  I understood being er/pr positive indicates what is feeding the tumor.  Being her2 positive they can give the drug to shrink the mass.  Is my understanding incorrect?  It's all so confusing but I am glad I can talk to others who have experience with breast cancer.

 

Also, they are calling it grade 3 aggressive.  I understood it could not be staged until removed.  Am I misunderstanding?

 

bevaschia

GlowMore said:

Hello Bev

Sincerely hope that your Port Placement went ok today....that port is a wonderful thing and helps a lot during chemo....and even later with the many blood tests we have to endure.

All the other ladies have given you many good ideas here and we have all had different things happen in different ways.  Mine was a lump which I found myself followed by a biop then port implant then lumpectomy/chemo/radiation and many many scans.  I didn't get my PET Scans until much later when they were looking hard to see if it was coming back.

If you are happy with your Oncologist and your Surgeon that is a good thing.  I didn't care for my first Onc on a gut level...so I called and asked for another one and loved him for years and years....and the rascal decided to retire in 2014...doggone it.  My BC is different than yours...as mine was IDC Triple Negative Stage 3B.......but I'm still here my dear and it has been 13 years now.   Puffin's advice about recording your sessions with the doctors is an excellent idea...or maybe if you cant do that...take someone with you to help you take notes.  Ask questions...be your own advocate...learn all you can....  Please keep posting and let us know hows you are doing.  We are all here for you.  Sending Prayers for Strength and Courage.  Glo

 

 

Thank you so much Glo.  Your

Thank you so much Glo.  Your words have comforted me.  Chemo starts Friday.  A little scared, but it has to be done.  

bevaschia

Double Whammy said:

I have never been scanned

I don't think scans are ordered unless something is suspected - like if the patient reports pain (you have) or some other test is off which requires further investigation.  It sounds like you have an aggressive form of breast cancer (triple positive) in spite of everytihing indicating it's early stage.  If you're uncomfortable with not having more scans, then simply ask why not.  Oncologists are usually very happy to share their philosophy with you.  If you're not happy with their explanation, get another opinion. 

As far as knowing it's breast cancer and not a metastasis from another site, most cancers do not metastasize TO the breast.  They like to go to many other places, but not usually TO the breast.  When the pathologist looked at the tissue obtained from your biopsy,  s/he could tell that they were looking at breast cells (either ductal or lobular which they can also tell).  

Good luck as you start your treatments.  I have never had a scan (diagnosed in 2010) and initially I wondered why, but I never asked.  I do think insurance restrictions play a role here, and unless the physician can justify ordering one (like saying they have a reason to suspect something), they don't do it and I don't think it is considered "standard of care" for stage 1 node negative disease.  Five years of no scans, and I'm still fine.  I do still have a breast MRI yearly in addition to mammogram, but only my breasts are imaged.   

This is indeed a frightening experience.  I hope you keep connected with this group.  They helped me a lot.

Suzanne

Thank you so much, Suzanne.

Thank you so much, Suzanne.  Seems like after getting diagnosed I am more in tune with any little ache or pain I may have dismissed before.  

Gm2873

PET

we thought I was early stage too, but my oncologist wanted a PET done prior to starting chemo and it came back showing a bone met to my left sacrum. My tumor was not large and only had microscopic malignant cells in the sentinel node, no other involvement. If you are having pain, you should definitely ask your oncologist about that. Seems like further testing should be done. After the PET, they did an MRI on the pelvic area and then a CT guided biopsy on the metastases. The bone lesion was triple positive just like the tumor in my Breast and responded very well to the chemo.

bevaschia

Gm2873 said:

PET

we thought I was early stage too, but my oncologist wanted a PET done prior to starting chemo and it came back showing a bone met to my left sacrum. My tumor was not large and only had microscopic malignant cells in the sentinel node, no other involvement. If you are having pain, you should definitely ask your oncologist about that. Seems like further testing should be done. After the PET, they did an MRI on the pelvic area and then a CT guided biopsy on the metastases. The bone lesion was triple positive just like the tumor in my Breast and responded very well to the chemo.

Thank you so much!!  I will

Thank you so much!!  I will let him know.

 

camul

Hi and.welcome.
I noticed you said.it.was.a.grade.3'triple positive. Do you.know what stage you are? When I was a initially diagnosed, I didn't have a pet as the onco and surgeon didn't feel a need. I did have a bone and pet a few weeks after.finishing.chemo, and all was clear. Then once.a.year he did scans but I saw.him every 3 months for 8+ years all came clear until ;m pain caused scans at 8 months and it was back
He didn't do scans or.markers unless they were called for due to symptoms and I agreed.
Sounds like they are moving pretty quick. I know I felt like I was doing something to help once treatments started.
Hope all goes smoothly for you. THIS time around I got th port! I love it. My veins were.shot after.the first course. I chose no port, figured 4 rounds no big.deal. I didn't factor in all the blood work, etc. My veins are.shot.now
Lee p us posted
Hugs,
Carol

bevaschia

camul said:

Hi and.welcome.
I noticed you said.it.was.a.grade.3'triple positive. Do you.know what stage you are? When I was a initially diagnosed, I didn't have a pet as the onco and surgeon didn't feel a need. I did have a bone and pet a few weeks after.finishing.chemo, and all was clear. Then once.a.year he did scans but I saw.him every 3 months for 8+ years all came clear until ;m pain caused scans at 8 months and it was back
He didn't do scans or.markers unless they were called for due to symptoms and I agreed.
Sounds like they are moving pretty quick. I know I felt like I was doing something to help once treatments started.
Hope all goes smoothly for you. THIS time around I got th port! I love it. My veins were.shot after.the first course. I chose no port, figured 4 rounds no big.deal. I didn't factor in all the blood work, etc. My veins are.shot.now
Lee p us posted
Hugs,
Carol

HI Carol, they told me

HI Carol, they told me staging would occur after surgery.  Grade 3 aggressive invasive ductal carcinoma is all I know.  

Jazz88

Hi Bev,
After reading all the

Hi Bev,

After reading all the responses from everyone I also agree you need to get some additional info from your oncologist.  Sometimes they are not so good at taking the time to really make sure that we understand the approach they are taking.  This is not an easy thing to go through, but you do get through with the help of family and friends(rely on them as much as you can you need them) and finding in yourself the strength that you did not know you had.  I am a 3 1/2 year breast cancer survivor after having a mastectomy of the right breast, Chemo and Radiation as well.  I know exactly how you feel!!!  Stay strong, give yourself something to look forward to after chemo is done(for me it was Jazzercise), I just wanted to be able to do it again and it gave me something positive to strive for.  My thoughts are with you, please keep us informed on how it is going

GlowMore

Jazz88 said:

Hi Bev,
After reading all the

Hi Bev,

After reading all the responses from everyone I also agree you need to get some additional info from your oncologist.  Sometimes they are not so good at taking the time to really make sure that we understand the approach they are taking.  This is not an easy thing to go through, but you do get through with the help of family and friends(rely on them as much as you can you need them) and finding in yourself the strength that you did not know you had.  I am a 3 1/2 year breast cancer survivor after having a mastectomy of the right breast, Chemo and Radiation as well.  I know exactly how you feel!!!  Stay strong, give yourself something to look forward to after chemo is done(for me it was Jazzercise), I just wanted to be able to do it again and it gave me something positive to strive for.  My thoughts are with you, please keep us informed on how it is going

We need an Update Beva**

Hi Bev.......how about an update on what is happening with you?   Hugs, Glo

 

bevaschia

newly diagnosed- update

Well, there really isn't a whole lot to tell.  I took my first chemo on the 31st-I'm triple positive, so it consisted of perjeta, taxotere and herceptin.  The first two days were uneventful, and Monday was the hardest with body aches, stiffness, headache and the dang diarrhea.  The diarrhea has continued on and off over the last week, but I'm getting through it.  I have upcoming labs on the 14th, and I'm assuming if those look good, I will get my second scheduled round of chemo on the 21st.  What exactly are they looking for with the labs?  I'm assuming chemo gets progressively harder to get through each time.  Is that the case?  I have lost very little hair so far, but I'm assuming that will change soon also.  For the most part, I feel fine now.  I have some vaginal issues with feeling 'raw and dry' but I hope that will pass soon and I will mention it to the Doctor.  Have any of you experienced that as well?

I have some issues sleeping at night, but not every night.  I'll be ordering a wig tomorrow just to use for special occasions or when I have to travel for work.  Any advice on wigs anyone wants to throw out to me?  As always, thank you for any information you can provide.  LOVE to you all.

 

 

button2

bevaschia said:

newly diagnosed- update

Well, there really isn't a whole lot to tell.  I took my first chemo on the 31st-I'm triple positive, so it consisted of perjeta, taxotere and herceptin.  The first two days were uneventful, and Monday was the hardest with body aches, stiffness, headache and the dang diarrhea.  The diarrhea has continued on and off over the last week, but I'm getting through it.  I have upcoming labs on the 14th, and I'm assuming if those look good, I will get my second scheduled round of chemo on the 21st.  What exactly are they looking for with the labs?  I'm assuming chemo gets progressively harder to get through each time.  Is that the case?  I have lost very little hair so far, but I'm assuming that will change soon also.  For the most part, I feel fine now.  I have some vaginal issues with feeling 'raw and dry' but I hope that will pass soon and I will mention it to the Doctor.  Have any of you experienced that as well?

I have some issues sleeping at night, but not every night.  I'll be ordering a wig tomorrow just to use for special occasions or when I have to travel for work.  Any advice on wigs anyone wants to throw out to me?  As always, thank you for any information you can provide.  LOVE to you all.

 

 

Stay strong

To be honest, it does get a bit harder each time you do a chemo round. The thing is that time goes by, changes in drugs are made and the symptoms change a lot. The diarrhea can become constipation in a matter of days for instance. There's never a dull moment with cancer! The main thing is to treat each symptom before it becomes worse. I had ointments for bloody nose, dry skin, mouth sores, you name it. The hair loss is a huge pain, but I was amazed at how fast my hair came back, thicker too. I had a wig, like you say for special occasions, but mostly I liked fancy scarves. I had a little grey scullcap that I would wear with a long fancy scarf tied around my head and falling down my back. Kind of "Jennifer Lopez"! I got compliments on my fancy scarves all the time. Keep us posted, we love you too...Anna