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Just beginning this journey

Jamie1.3cm's picture
Jamie1.3cm
Posts: 188
Joined: Jan 2011

New to breast cancer, but not new to cancer. Had surgery for kidney cancer 1.5 years ago. Had benign tumors removed from neck lymph nodes 1 year ago.

Wont know anything for sure until more tests, but I failed the mammo, failed the sonogram, failed the nail gun type biopsy. Saw the breast surgeon. 

So I'm processing words like invasive metastatic breast cancer with lymph node mets. Don't know yet if lobular or ductal. Stage may be II or III. PET scan and breast MRI will tell more, maybe next week. Will need port for chemo. Chemo before surgery. Will need radiation since mets present. Appointment with oncologist Dec 5, I think.

I have that, albeit tentative, information. But what I don't know is what life will be like for the foreseeable future. I know everyone responds differently, but as a single person who has to support herself both physically and financially, I really need some idea of what reality will be for me, probably.

I'm a teacher. Will I be able to work during my chemo? I will likely have the double mastectomy. How long before I'll be up and around from that? What's the time between chemo and surgery? Will I need to take off the spring semester?

I know those questions are hard to answer, but I have to tell my job something. I have to hire a replacement, if that's what I'll need, and I can't do that at the last minute.

I just have no idea what to expect. I've never known anyone with breast cancer, and I feel like I'm walking in the dark.  Would love info on other people's experiences.

CypressCynthia's picture
CypressCynthia
Posts: 3874
Joined: Oct 2009

I was just 33 when I was diagnosed with Stage 3 breast cancer (large tumor and 4 positive nodes).  I had a mastectomy, chemo, radiation and 7 years of tamoxifen.  I then had a very long remission (yay) for 18 years.

In 2005, breast cancer came back to my right ribs and lung.  Treated that with hormone therapy, xgeva and radiation.  Back in remission.  This year it came back to my liver.

Sounds awful but I will be a cancer survivor of 27 years in February!  I am currently stable with no active evidence of disease after chemo again.

We are headed to Disney World in December to celebrate!

My advice: 1) don't give up because none of us come with expiration dates 2) regard treatment as your best friend and cancer as your worst enemy 3) be adherent to your recommended treatment even when the going gets tough 4) view side effects as a puzzle to be figured out.  For example, nausea is one of my personal weak spots, but, with great help from my doctors and nurses, we have worked out a regiimen that really helps (small, frequent meals, ginger ale, zofran and marinol).  Hang in there, be stubborn and fight tough!

Hugs and prayers!

Jamie1.3cm's picture
Jamie1.3cm
Posts: 188
Joined: Jan 2011

Thanks, CC. I hate it that you've had to fight this battle over and over again.

hormone therapy is another term I've heard. Her2 negative, but hormone responsive.

Were you able to keep working while you were on chemo?

TraciInLA's picture
TraciInLA
Posts: 1835
Joined: Jul 2009

Hi, Jamie -

The chemo regimens used for breast cancer affect everyone so differently -- I know this isn't what you want to hear, but it's pretty darn impossible to predict how you'll feel until you get there.

I did 4 rounds of Taxotere/Cytoxan 4 years ago, when I was 40.  I have an office job, and continued to work through treatment, but had to take off 3-4 days for each round.  It was a struggle just to work and go to all my doctors' appointments -- I did absolutely nothing else during that time.  At the same time, a woman here on this board who was nearly 20 years older than me was doing the exact same chemo I was -- she also continued to work, and take Jazzercise classes several times a week.  Jazzercise!!??!!  There was no way I had that kind of energy.

I'm a big, major, HUGE planner -- I want to be prepared for everything.  Cancer laughed in my face about that, and let me know I could just wave goodbye to that idea now.

It's a huge change in mindset, but I got through it, I'm doing very well after 4 years, and you'll get here too, Jamie.

Traci

 

 

 

elm3544's picture
elm3544
Posts: 745
Joined: Jul 2009

I had the same, 4 rounds of Taxotere/Cytoxin  June thru September of 2009.  I couldn't work, I couldn't even drive. It hit me hard. it definitely effects everyone differently. My sister in law just went through the same tratment and she went to Disneyland, shopping, restaurants, it didn't stop her at all.she said the Neulasta never caused her bones to hurt.  And she could even taste her food. she said the only side effects she had were hair loss and black nails. Oh and now she doesn't get hot flashes from Tamoxifen. Completely different experience than mine. 

CypressCynthia's picture
CypressCynthia
Posts: 3874
Joined: Oct 2009

Hormone therapy is kind of a confusing term.  If your tumor has estrogen receptors (ER+), that opens up your options to what is called hormone therapy.  ER+ means your tumor is fueled by estrogen and certain medications can block the tumor's ability to use estrogen (tamoxifen) or lower estrogen levels (arimidex, femara or aromasin).  The latter drugs are usually recommended for postmenopausal women.

Although these drugs have some side effects, to me, the effects are manageable. 

My first round of chemo was in 1987 and I worked until this year.  I was much sicker with the liver mets and the second round of chemo hit me hard, but I was sick before I started with loss of appetite, nausea and terrible heartburn.  My oncologist told me I needed to seriously think about going out on disability this time.  I had a hard time with the decision at first, but I am beginning to move on and even enjoy the idea.

Although my story sounds awful, I have many good days and I enjoy my family and friends.  Life is good for me.  Bad days and good days, but I am happy to be here. Hang in there!

Jamie1.3cm's picture
Jamie1.3cm
Posts: 188
Joined: Jan 2011

Yep, my surgeon definitely said I'd be having hormone therapy with the chemo. I'm wondering if I 'll also have my ovaries removed, or does the hormone therapy knock them out anyway.

ugh, I'm sorry this second round has been so brutal!

desertgirl947's picture
desertgirl947
Posts: 404
Joined: Oct 2012

I am, like you, in education.  My initial tests began in December 2011.  In January 2012 I was told I had breast cancer.  Like you, I had no idea how much time I would need away from work.  At the start, I was thinking solely about post-surgery (had a double mastectomy).  Although I was told at the outset that I could be up and around in about four weeks' time, reality had it not be that way at all.  (I am not in the wimpy category . . .  Smile).  Surgery had revealed there to be more challenges, which slowed my healing.  Then the pathology reports indicated I needed to do more than have radiation therapy and hormonal therapy.  Being the "toughie" I was, I thought that in a two-week period of time, I could work at school seven days.  Reality proved different, not that I was nauseated from the chemo, but I had a few queasy days with the first four rounds and then I had some other issues for a few days with the last four rounds.  Because I worked with young kids who loved to come up and give hugs and such -- and parents often would send kids to school who were sick -- my oncologist recommended that I not work.  So, in the month between my surgery and then began chemo, I spent my time healing as well as getting my port put in.

I was out of school from mid-February to the end of the school year. 

When school resumed in September, I was half way through radiation therapy.  I went to school half days, until I had some issues with burning.  I think that I ended up taking full days off for about two weeks.  In mid-October, I resumed a full schedule. 

I had enough sick days saved up that I only came up a week short for that large portion of time.  When school began that September, I enrolled in our union's sick bank, and they covered what days I needed beyond what I normally get.

I did pop down to school a few times when I was out; but I believe it was smart to stay out.  My bloodwork numbers were always good, and so I am not sure how susceptible I might have been to others' germs, but I opted to play it safe because I wanted to stay on schedule for everything, which I did.

Hope this info helps.

 

e

 

BTW:  If I had had a different kind of job (like an office or such), I think I would have  been able to work some.  As it was, I did not hole myself up in the house.

Jamie1.3cm's picture
Jamie1.3cm
Posts: 188
Joined: Jan 2011

Thanks Desertgirl and Traci. That does help me have some perspective. I couldn't figure out why no one was giving me any idea on this very important issue.  Sounds like I need to be prepared to miss quite a bit in the spring. Generally, I force myself up and out because I get cabin fever and depression if I sit at home too much. I think I was home only about four days for my kidney cancer surgery! :) But maybe I should hire at least a part time person to help me.

cinnamonsmile
Posts: 1043
Joined: Dec 2010

 I can't speak to chemo and/or rads because I didn't have them. But I did have a double mastectomy with lymph node removal on the cancer side, and sentinel nodes removed on both sides.

Like Tracy said, no one comes out of treatment the same. Some heal fantastically well, some don't. I am one that didn't. I have severe nerve damage from the BMX with node removal and bilateral lymphedema. My pain is so severe, I am on mulitple medications and treatments. I spent about 5 months in OT getting myofascial release for severe scar tissue adhesions.

 

I am not saying that you will get and surgical side effects, but I do want you to know that they can happen. At least this way, if you experience any extreme pain/swelling etc, you will know that there are others out here who have been through it and understand. And should something happen, you may remember in the back of your mind that you heard x and y symptoms some where...

Double Whammy's picture
Double Whammy
Posts: 2260
Joined: Jun 2010

You will hear about so and so who came to work every day and how well she tolerated all the treatments and that it's all a matter of attitude.  It isn't.  We're all different and how you react will be unique to you.  And you're still healing from your kidney cancer.  Our bodies take a while to fully recover even if you think you feel fine.  Sure attitude helps, but so and so simply had an easier time (or less chemo or even no chemo). 

I had only 4 sessions of chemo and I could have worked through the first three (if I had a non-strenuous job), but I was so happy I was retired and could spend those days like a princess, letting my body heal and recuperate.  I don't know how I would have done it if I had actually had to go to work.  Maybe not so good.  The last cycle there was no way I could have worked at anything.  It knocked the socks off me.  As a teacher, you will be exposed to all sorts of germs when your immune system is at its lowest.  If at all possible, it might be a good idea for you to plan not to be working at least during chemo and after surgery.  Two pretty doggone good reasons - you need to recuperate and you don't need to catch anything.

Lots of luck to you.  Having had 2 primary carncers myself, I know it can be overwhelming.  We're here as needed. 

Suzanne

 

Jamie1.3cm's picture
Jamie1.3cm
Posts: 188
Joined: Jan 2011

Thanks Suzanne and Cinnamon. I'm starting to get an idea of the range of responses I might have. That makes planning hard! Another hard thing: waiting for the next tests that will inform the oncologist about how much chemo I'll need. The range seems to be everything from a few weeks to a few months! Again, hard to plan until that is known.

suggestions? My doc mentioned a few things she wanted done before thanksgiving, but added tha she wouldn't be in town this week, but that would be ok because he colleagues will take care of everything. So I expected a call from her office today, starting to line things up (pet scan, breast MRI, and port put in.) Well, no call. I kinda need to know about these things before they happen! Isn't eating restricted before the pet scan (no sugars), the day before? Jeez, there's not much time left "before thanksgiving."

maybe that was just optimistic on her part?

TraciInLA's picture
TraciInLA
Posts: 1835
Joined: Jul 2009

Jamie,

This is definitely a generalization, but if it helps:  To the best of my knowledge, in general, the minimum number of chemo rounds for breast cancer is 4, usually given 3 weeks apart. 

There are definitely women who receive 6 rounds, 8 rounds, or more, depending on the specifics of their diagnosis, and there are some less common chemo regimens that may compress the 3 weeks into shorter intervals -- but, just to start with for general planning purposes, you may want to use 12ish weeks as your baseline.

Traci

2ndxyvonne
Posts: 41
Joined: Nov 2013

I was almost a five year survivor, had a recurrence dx Oct of this year.  I am now Stage 4, my cancer is ER+ PR-Her2neu+.  I have to have 6 rounds of chemo With Taxotere and 2 antibodies, onco hasn't said anything about rads, yet.  I had a PET 2 weeks ago, they had me fast for 6 hours before the test.  They inject you with a sugar dye which "lights up" any cancer cells in your body.  It wasn't bad at all, (I just closed my eyes and meditated the whole time.)  I, too, start chemo in Dec, get my port Dec. 6.  These ladies on here have been giving me some great advice.  I think if we drink lots of water, eat small meals, take the meds dr. gives for nausea, we will be fine.  My husband had chemo with his lung cancer, he had a bad time, because he wouldn't take the meds.  He had a thing about taking pills, so he had to end up quitting treatments.  Me?  I am fighting this demon with everything they have and I will be bending these ladies ears for advice all along my journey.  Good luck to you.  (Oh, first cancer was staged 1B, 1 lymph node involved, I had a modified radical mx, nothing else.)

Jamie1.3cm's picture
Jamie1.3cm
Posts: 188
Joined: Jan 2011

I'm starting to get some idea of how chemo will go.  You've corrected some misunderstandings. I thought I'd be going into chemo every day.  Good to know it's spread out a bit. 

I'm hoping I can listen to my MP3 player during the PET; it seems really boring with lots of waiting. Books and music sound called for.

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