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New Here, in breast cancer...

New Here, in breast cancer...

Posted by Elsie13 on Jan 12, 2020 12:50 pm

twomutts9‍ Hi again!  If you like, tell your breast cancer story here, and click 'REPLY.'  Or  Click 'POST,' whatever yellow button you see.
In a couple of days, you might want to read the navigation page:      https://cancerconnection.ca/faq .
In 2016: diagnosed with stage 2 ovarian cancer. Treatment: hysterectomy, chemo, radiation. Afterwards: No Evidence of Disease!

Re: New Here, in breast cancer...

Posted by Fabia on Jan 13, 2020 11:22 am

I have been reading and learning so much on this site, I thought it was finally time to share my own story.
After moving to a new area and finding a new doctor, I had a physical in June.  She was being very thorough in getting blood work, etc. done and getting bone density and mammogram appointments set up. I told her that I really wasn’t due til Nov. – my 2 yr. date, but she said that was fine.
I went for routine mammogram on Sept. 27.  On Oct. 7, I received the call from the breast clinic that I needed the mammogram redone and an ultrasound.  It was scheduled for Nov. 13.  The next day I received a call that there was a cancellation for the very next day, Oct. 9.  A biopsy was also done at that time and 1 1/2 weeks later, I received the news that I had IDC.  Saw the surgeon on Nov. 5 and had a lumpectomy and lymph node dissection on Nov. 15 – just around the time I probably would have only just been going for my mammogram.  I felt like someone was looking after me as all these things fell into place in the timing of being done earlier than they should have!  I am fortunate to have a friend who has gone through mastectomy (and recent second breast as precaution), chemo, radiation, Herceptin shots.  She has been a wealth of knowledge, support and a positive role model through all of this. 
Surgeon did an amazing job.  Tumour was just above the nipple and the incision is around the areola.  Aside from that, you can’t tell I had any surgery.  My breast has not changed shape. I have felt great, just a bit of swelling in the lymph node area and some nerve sensitivity in the first while. My follow-up went well - no cancer in lymph nodes and clear margins, ER+ and PR+ and HER2 neg.  He didn’t think I would need chemo.  As we were leaving his office, he came out and said the HER2 wasn’t definitive and would be redone.
I had oncologist and radiologist appointments on Dec. 15.  The oncologist confirmed ER+ PR+ and said HER2 neg. and recommended the OncoDX test be done before final decision on chemo. Also saw the radiologist and he recommended 16 treatments with Deep Inspiration Breath hold as it is my left breast.  
I saw in oncologist clinical notes in MyChart a few days later that he is having the HER2 test done again.  His report says Grade 2, 16 mm, DCIS InSitu.  The only place I see HER2 is in the biopsy pathology report which say HER2 Equivocal (Score 2+).  
Like everyone, the waiting drives me crazy.  So, my next appointments are on Wed. to hopefully find out the results of the OncoDX and HER2 and medications.  He talked about biophosphonates as well as Tamoxifen type drug.  I have been reading about HER2 Equivocal and reports on determining it negative.  Find this a bit confusing and understand that the HER2 might come back positive.   I have been practicing breathing – harder to hold breath for 20 to 30 sec. than I thought.  I am hopeful I won’t need chemo but am prepared if that is the best option.  I am hoping that radiation won’t cause too many changes to the breast but am expecting skin conditions and possible change to shape and feel.
Just want to add a thank you to all of the support, information, links that you all give by taking the time to share on this forum.
 

Re: New Here, in breast cancer...

Posted by Elsie13 on Jan 13, 2020 4:55 pm

Fabia‍ Welcome to cancerconnection, and sorry for the reasons you need to be here. It sounds like you have an excellent understanding of what's going on with your treatment plan.  Maybe LPPK‍ , Monade‍ and Marsh‍ will talk to you about the OncoDX test, and I'm not sure, but perhaps someone will know why there's that HER2 confusion? 
In 2016: diagnosed with stage 2 ovarian cancer. Treatment: hysterectomy, chemo, radiation. Afterwards: No Evidence of Disease!

Re: New Here, in breast cancer...

Posted by Marsh on Jan 13, 2020 6:47 pm

Hi there! Sorry about needing to be here but it's the best place to be! I was shocked to be diagnosed after a routine mammogram in Feb of 2018 with Invasive Ductal Carcinoma in my right breast. It was Stage 1, ER,PR positive and HER2 negative, no lymph node involvement and clear margins after lumpectomy. However it was a Grade 3 tumour. My Oncotype DX test suggested that I would benefit from chemo. So I did 4 cycles of dose dense (every two weeks instead of the usual 3 week cycle) AC Chemo. I really had no problems at all with it. Some tiredness the day after but otherwise I just continued on as usual. A few weeks after chemo I started radiation therapy. 25 whole breast treatments and then 5 to the tumour site. Again I had no problems with the treatment. My skin did very well. Just some redness like a mild sunburn and one spot that they gave me some cream for that cleared it up almost overnight. Flamazine was it. The look and feel of my breast changed very little after rads. It's now been 3 months post Rads and I feel back to normal other than slight numbness at my incision (my Radiation Oncologist says that may come back over time) and a small dent and scar. Hopefully you will not need chemo, but if you do I think you will find it very doable! Everyone is different of course and I realize that some do have side effects but they are not a given. I now go every 6 months for an infusion of Zometa which is a Biophosphonate. I have had one and again no side effects at all. I am also on Letrozole for at least 5 years and so far tolerating it well. The radiation techs at my hospital were incredibly friendly and helpful. They watched me closely and let me know if they thought anything looked unusual or needed care. I didn't have to do the breath holds as mine was on the right side, but talking to others in the waiting room they said the techs showed them how to do it  and they had no problems. You sound as though you have a good handle on things. I found I was very well taken care of during treatment and the nurses at chemo and the techs at radiation had a great deal of knowledge & tips and answered a multitude of questions I had. I really don't know anything about the HER2 confusion. Hopefully someone here can answer that for you. If I can help with anything please just ask.
 

Re: New Here, in breast cancer...

Posted by mc2 on Jan 14, 2020 8:06 am

Fabia‍ Thank you for sharing your story.  For radiation, it may be good to expect the worse but the worse may not happen.  My skin held up with just a small rash under my breast the week after radiation ended (i had worse sun burns albeit not there ;)  It went away on its own in about a week.  Fatigue was worse for me - and I experiencedthe difference between fatigue and tiredness! Seems better now but it lasted longer than the "usual 3-4 weeks post-radiation.  We're all different.  I wish you well.

Re: New Here, in breast cancer...

Posted by twomutts9 on Jan 14, 2020 3:57 pm

Hi all in cyber world. Yes, as the above subject says, I am a newbie. I was formally diagnosed on December 5 - a few weeks before Christmas and a few weeks before my 50th birthday (I'm a Boxing Day baby). I don't know the exact technical name but my radiation oncologist said it is "typical, normal but serious breast cancer" - that's one description. I further learned it is estrogen-based, meaning my estrogen is its food source. And I also learned it is stage 4. Stage 4! Prior to this roller coaster ride, if I ever heard 'stage 4' I would associate that with not good news. Now, I have learned that it only means the "c" has travelled (sorry, sometimes I don't like saying the word.) In my case, my "c" has travelled from my breast, into my lymph nodes, left some spots along my spine and finally settled in my tailbone (sacrum.) I have had radiation to shrink this sacrum mass back in early December. I am happy to say, according to how I am currently feeling and the symptoms I am no longer experiencing, it worked. I rang that darn bell when I was done!

So back to my journey. First hearing, "6.8cm sacrum mass" then "2.8cm lump in left breast", well my world ground to a halt. I basically went from 60 to 0; not 0 to 60. I'm normally a super physically active, fun-loving (still am!) and SUPER positive person (still am!) I play hockey, I play fastball in the summer, I had just completed a beginner cross-fit with my sister and I was a member of a gym. All just to be healthy. So...cancer? Me? Wth??? There is absolutely ZERO history in my family. Well, my grandfather but that was way before I was born. So thus began this journey. Everything basically stopped. Surgery is not an option right now only because my medical oncologist told me it wouldn't get everything so why put me through that. I'm good with that. I feel fortunate - my treatment is pill therapy - NOT chemotherapy! I will be taking Letrozole and Palbuciclib. These pills for the rest of my life. I feel fortunate in that I am given this type of treatment. I am grateful too. I honestly had told myself that chemotherapy was going to happen - and plus, through all the testing I went through, I asked each physician what they thought the course of treatment was, and they all said chemotherapy. I have been on Letrozole for one week now (I am awaiting insurance authorization for the other drug but it will start in the next couple of weeks.) Hard to say if I am experiencing any side effects - they are numerous and it all depends on the person. I do expect to experience some in the next coming weeks as these drugs fully enter my system. I will endure it - it means the medicine is working. The hot flashes have come back - that's a side effect. I'm okay with that. To me, that means this drug is getting into me and doing its job. I have been menopausal for a couple of years now.

So that's me in a nutshell. I'm a mom. I'm a wife. I'm used to working a normal full-time job. I still have my job; it's just on hiatus. I have been working for a municipal government for 24 years. My colleagues are absolutely amazing. I am also lucky to work where I work. I hope to meet others like me to discuss our journies and help bolster one another. Yea, I've had my pity-me moments and my panic attacks (they kind of come when I'm awake in the middle of the night but I quickly defuse the situation and tell them to get the heck out of my head!) I have an amazing network of supports - my immediately family, my sisters, brothers, my friends, my co-workers...again, I am fortunate. I got this. And as I am now calling myself, Warrior Woman. Because I am.

So, anyway, this is me. I am a super positive person - I really don't know any other way to be. I'm not a negative-nelly and I will steer clear of any negative-nellies. I used to not like being called "perky" when I was younger. Now? I definitely don't mind. This journey, which started basically at the end of August 2019, has really taught me a lot about things. I don't sweat the small stuff anymore. My new motto is, "one day at a time". And that's how I'm taking things. Right now, I feel great. A couple of months ago? Yea, far different story. I've gone through a lot, including a severe allergic reaction to a nerve blocking drug, so many tests and pokes and prods. I'd never had a mammogram (I hadn't received the 'letter' as I wasn't even 50 yet) never mind having a biopsy. I went through it and I will continue to soldier on through everything. This is my new life. My new normal. But I still am the same person.

So, it would be nice to cyber talk with some peeps. Sorry we all have to meet in such a situation. Till we 'meet/chat', yours in friendship...
Warrior Woman
 

Re: New Here, in breast cancer...

Posted by Elsie13 on Jan 14, 2020 4:37 pm

twomutts9‍  Great introduction!  What a situation, never having had a mammogram due to your young age!  There are so many different types and stages of breast cancer. (I had ovarian cancer). I'm not sure who I should introduce you to.  Maybe Janegj‍ , gogirl‍ and CDKam‍ will join in this discussion. 
In 2016: diagnosed with stage 2 ovarian cancer. Treatment: hysterectomy, chemo, radiation. Afterwards: No Evidence of Disease!

Re: New Here, in breast cancer...

Posted by Wendy Tea on Jan 14, 2020 7:54 pm

twomutts9‍  Welcome to our home away from home.  We have an amazing supportive group who will help,  guide, or just listen. You can click on a picture and read about the other members. You can chime in and share your successes and failures. Check out the topics under Treatments and Side Effects. It took 4 months for Letrozole 's side effects to hit me but remember everyone will react differently to any given medication.  Keep a written record of what is happening. 
Best wishes 
Wendy Tea 
I am a survivor. Wendy Tea

Re: New Here, in breast cancer...

Posted by Kims1961 on Jan 14, 2020 10:32 pm

Fabia‍ Thank you for sharing your story.  Sounds like you have a very engaged health team and great they are getting you in so quickly.

You have some excellent responses from the others.  I thought I would add my two cents in regards to the radiation breathing techniques.  I was diagnosed in 2017 with IDC, ER+ and HER2+.  My cancer was also on my left side and I opted for bilateral mastectomy.  For me, this was a good decision as they couldn't get clear margins.  I did 6 rounds of chemo and then 25 rounds of radiation - use ABC method ( Activated Breathing Control) sounds similar to the Deep Inspirational Breathing. My breast cancer centre didn't offer the ABC radiation so I had to travel 3.5 hours away for this procedure.  

What I learned was the technicians are awesome!!  They will provide a training session .  The technicians will tell you when to hold your breath - they do a radiation zap and then you can breathe again.  It was not nearly as difficult as I had feared.  Even when I "messed" up and didn't hold my breath deep enough - we just started again.  The technicians were very patient.  The room was darkened and they played some classic rock - a nice relaxing atmosphere for sure.  I found a youtube video that might be of interest.  

I found radiation not too bad - no real skin issues until after treatment.  The key was to apply the Glaxol cream on before, during and after treatment.  And you are so right - if you have to do chemo - they really do have some options to manage any side effects.  In fact, some people don't have any problematic issues at all .

https://www.youtube.com/watch?v=n6jXkgLnNnY

I'm also curious about your HER2 status.  I did Herceptin for the year and found it manageable.
 
Thank you for your post - please let us know how you're doing.  

Kim
 
Her2+, ER+ Bilateral mastectomy in 2017, followed by chemo and radiation. Mack and Hannah's mom

Re: New Here, in breast cancer...

Posted by Essjay on Jan 15, 2020 7:28 am

twomutts9‍ - great intro! So positive! I’m sorry you find yourself here, but I look forward to getting to know you and your mutts... Mines a bearded collie husky cross and she’s a great distraction...

 
Triple Negative Breast Cancer survivor since July 2018

Re: New Here, in breast cancer...

Posted by mc2 on Jan 15, 2020 8:18 am

twomutts9‍  Thank you Warrior Woman for sharing. I will keep in mind the "side effects mean its working" when   I need it.  Great way to look at it.  Hope your journey in 2020 is smoother than last year.  Thanks again.  

Re: New Here, in breast cancer...

Posted by Fabia on Jan 18, 2020 2:33 pm

I had my appointment on Wed. with the oncologist and received my Oncotype DX results.  Came back with a score of 28, so I will be starting DC chemo on Wed.  The oncologist said he was surprised as he was expecting that I would not need chemo.  I was not holding my breath and prepared (somewhat) that this is what may happen.  I am thankful that the test was done despite having to wait an extra 4 weeks, but an 7% recurrence reduction makes it worth the wait.   My HER2 did not change - he said it came back the same - negative, but when I asked if it means that it came back the same as before which was Equivocal >2, he said yes. Have been reading and still don't understand totally.  Maybe someone else can explain in a short versio of the technical medical reports I have been reading. 
I have my bone scan and CT scan on Monday, but no time for a PICC as Monday is the only day they do that and I will be having the scans at a different hospital.  I live approx. 2 hours from where my chemo will be.  I am doing blood work first thing Wed., appointment with oncologist, chemo training and chemo intravenously all on Wed.   A PICC will be put in before my second treatment.
I am having 4 treatments, 3 weeks apart - DC.  I have picked up my meds. -Dexamethasone, Ondansetron, Prochlorperazine and I see I have one syringe of Filgrastim.  Have read that quite often it is prescribed for a week or so after, so I am happy to see I only have one after treatments.  My radiation will now start in May.
So, I was down in the dumps for a day, but am back to feeling quite positive about everything.  Just glad that things are moving along again.  The waiting was brutal!
Thank you for your kind welcome and advice.

Re: New Here, in breast cancer...

Posted by happyhiker1 on Feb 7, 2020 8:26 pm

I'm new here, 68 yrs old, trying to figure out where to post my introduction. 
In my case, I felt pain early Oct (2019) in left breast, Dr. thought it was muscle pain and ordered
mammo which came back 'normal'. But pain continued, I was sure there was something there and got another Dr to order ultrasound which found an abnormality.
The biopsy Dec 10 showed invasive ductal carcinoma, 1.3 cm; a nice family dr. at local clinic let me know  the results, but I couldn't get an appmt to see the oncologist who ordered the biopsy, she wanted me to wait 3 weeks to see anyone and get an explanation of the results, all this while I was panicking about the cancer diagnosis.  Finally got a pivot nurse to get me in to see surgeon earlier, Jan 10th, and lumectomy surgery was Jan 24th.  Got the results this past Tues Feb 4th, all was clear, lymph nodes and margins.  Today is 2 weeks post-surgery and my main pain is armpit and below upper arm, like a burning sensation, most likely nerve pain from node removal. I'm wondering why she had to remove as many as 8 nodes, as I see online info that only Sentinel node and 2-3 others is necessary for verification.  I am also desperately hoping this nerve pain is temporary as is very debilitating; so one of my questions is have any others  experienced this and how long till it went away ?? 
So now I wait for molecular test to let me know if chemo is recommended, I am hoping it isn't:   I went thru' 6 months of chemo for Hodgkins lymphona 9 years ago, and 
really don't want to have to do that again!  Also, I am to see a radiologist to consult for radiation; the surgeon advised 16x. I am also quite worried since is on left side, so another question :  is heart damage possible or likely??  And, then 5 yrs of Armidex, but that worries me since I read it can lead to high bl pressure which I suspect I already have....
I also wonder if any one on this forum also discovered their tumor due to pain? One radiologist told me pain is very unusual. I wonder if a hard fall directly on my chest early Sept when I tripped coming down a steep trail, one month before the breast pain, might have moved the tumor or somehow  activated it so it became noticeable. Just really strange coincidence that  the breast pain began a month later. Otherwise it wouldn't have been found, as didn't show on mammo...
Really looking forward to any answers to these many questions!!
This is a wonderful resource, as I am quite a bit in the dark about things, my surgeon is so busy I had  to squeeze questions into about 5 minutes betw her phone calls while I was there in her office....

Re: New Here, in breast cancer...

Posted by Essjay on Feb 7, 2020 9:12 pm

happyhiker1‍ Welcome to the wonderful cancer connection community.

i too am a happy hiker, year round, usually with my husband and fluff hound Holly...

I too had nerve pain down my arm after my lumpectomy. It lasted about 6 weeks - it was caused by the swelling in my armpit. I struggled with it because pain meds did nothing for it...but distraction helped, especially work.

My tumour was on the left side too, and I had radiation. I did deep breath holds to lift my chest away from my heart. I had excellent clearance according to the scans so my heart is not affected by the radiation. My skin held up fairly well too. The worst bit was all the brown mole-like spots that went eventually.

i didn’t find my tumour due to pain, but I wonder if it was the tumour pressing on tissues in your breast that caused pain. Most breast cancers grow very slowly (over ten years or more), so I don’t believe you should blame the fall on the trail.

Do you have exercises from your surgeon? Getting back the mobility to your arm is important to prep for radiation since you will have to raise your arms above your head.

My other advice is to get back on the trail as soon as you feel ready. I exercised as much as I could after diagnosis, after surgery and through treatment. I am quite sure it has aided my recovery.

Keep asking questions, there’s always someone who will answer.

best wishes Essjay
Triple Negative Breast Cancer survivor since July 2018

Re: New Here, in breast cancer...

Posted by happyhiker1 on Feb 8, 2020 10:38 am

Thanks essjay, for the encouraging feedback, esp about the rad and avoiding heart area....will practice deep breaths!

Re: New Here, in breast cancer...

Posted by Simi on Feb 9, 2020 4:50 am

happyhiker1‍ hi just to answer your question I too discovered my breast cancer due to pain , I’m 43 years old , a year ago I started to experience  burning , stubbing pain in my left breast mammogram and ultrasound came back clear   Doctor told me “ no worries “ “ pain not common with breast cancer “ , I continued to push for more testing a biopsy and MRI determined I had invasive ductal carcinoma stage two grade two hormonal positive Her negative  had lumpectomy , radiation now on tamoxifen. 

Re: New Here, in breast cancer...

Posted by Monade on Feb 9, 2020 6:33 am

Hi Simi ... 
I am just like you! Just finished 20 rounds of radiation, now I started tamoxifen! 
I am having a crazy itch and pain in my nipple, it is from the radiation but has any of you experienced this? The doctor said to apply cold compress and he gave me a  hydrocortisone cream for the itch but it’s not working!
Can anyone recommend anything that has helped you to minimize the side effects?? 
Thanks and good luck to all
 

Re: New Here, in breast cancer...

Posted by Elsie13 on Feb 10, 2020 2:06 pm

Hello Monade‍ , I think that Lianne_adminCCS‍ , Runner Girl‍ , and Essjay‍ had radiation treatments for breast cancer. Maybe they can suggest something for the itching. 
In 2016: diagnosed with stage 2 ovarian cancer. Treatment: hysterectomy, chemo, radiation. Afterwards: No Evidence of Disease!

Re: New Here, in breast cancer...

Posted by happyhiker1 on Feb 10, 2020 2:19 pm

Thanks, Simi and Ashcon for feedback (can't figure out how to reply to individuals)... interesting that
pain asso with lumps seems so rare, it was very present in my case.

Re: New Here, in breast cancer...

Posted by Lianne_adminCCS on Feb 10, 2020 3:48 pm

Monade‍ 
As to the radiation itch, I went from an itchy sunburn like feel to a full out deep burns so I ended up using a prescription cream prescribed by the rad onc. I was advised to use non alcohol and fragrant soaps and lotions and I followed that for the year following treatment.  Some people swear by the oatmeal bath. The radiation therapists are a good resource for ideas


Lianne

Re: New Here, in breast cancer...

Posted by Essjay on Feb 10, 2020 3:56 pm

hi Monade‍ I too had an itchy boob from radiation. I ended up scratching my breast raw (mostly in my sleep), my technician advised a hydrocortisone cream which i got from the pharmacist. It did calm things down and I also used the glaxol base cream more often for a bit.
Hope it eases soon. Essjay
Triple Negative Breast Cancer survivor since July 2018

Re: New Here, in breast cancer...

Posted by mamaduck on Feb 11, 2020 11:30 am

happyhiker1‍ 

I was just reading your post. The number of lymph nodes varies from person to person so perhaps you had quite a few. They removed four during my sentinel node biopsy. I am not sure where you live but one of the great ways to reduce swelling is to find a registered massage therapist or physiotherapist who does manual lymph drainage. It is a very gentle treatment but it is extremely effective. 

mamaduck

PS.  to tag someone, type @ and then pick their name from the list that shows up