Lumpectomy scheduled for July 20. I have some questions.

poeticrevolver

Hello. I'm 32 yrs old, dx IDC. I am scheduled for lumpectomy on July 20th.

I have a question.

If the cancer has spread to my lymph nodes, and I need chemo, do I have to have radiation?

This is unclear to me.

Initially, the surgeon told me that if we did the lumpectomy you have to have six weeks of radiation. But what I don't understand is if it is in the lymph nodes, which I have a strong feeling it is(due to many abnormal lymp nodes showing on ultrasound), do I still have to do the six weeks of radiation? Or just chemo? Or both?

A concern of mine is that if I have radiation it will damage my tissue to the point that if later I need a masectomy, I will not be able to have reconstructive surgery.

I know that surviving this is my top priority. Another thing is that my PET is showing a thymoma. Which is cancer of the thymus gland. Obviously, I'm concerned that the bc has spread to the thymus gland. My docs say it is unlikely, and rare, for that to happen. However, I did find actual case studies where that exact thing happened.

Also, I'm having fevers every single day, up to 101, is this a symptom of bc? I've been having them since Oct. of last year.

Thx for reading. Any advice would be greatly appreciated.

marcy4

Poeticrevolver,

I can answer one part of your question.  I had a lumpectomy.  My lump was 4cm and I had 3 positive lymph nodes.  I am presently having chemo and then will follow with 6 weeks radiation to my breast.  I have chosen not to have my armpit area radiated, although it was recommended by the radiologoist.  I am 51 so have not thoughts of doing any reconstruction now or in the future if need be.  I can understand at 32 that your feelings may be quite different about this.

Remember to ask lots of questions and be well nformed about your decisions whatever they may be .  I was afraid radiating my armpit might cause lymphedema so that is why I am refusing it but many women have it done as well to be as proactive as possible,  I am also HER+ , Grade 3 which may play a role in chemo or not as well. 

I have not had any fevers at any time before or during my treatment so I can't help you with that. Best of luck.

Twinmom77

Hello.  Seems like we have a few similarities - I was diagnosed at 32 last June.  I had abnormal looking lymph nodes on an ultrasound also and they all turned out fine.  I had chemo and 7 weeks of rads and I'm just finishing up my Herceptin this month.  I was told the younger you are, the more aggressively they treat you, especially if you're a high grade and Her2+ (and I see you're Her2-).  I think it's pretty standard to get rads if you're having a lumpectomy.  I was planning on skipping rads because I was just terrified of what it would do to me.  I went ahead and did it because after chemo I had a lumpectomy and although there was no IDC left, there was a little bit of DCIS left and my hope is that rads took care of that nastiness!  I can tell you, for all the fretting I did about going through 7 wks of rads, I had nearly no side effects and my skin was back to normal within a couple weeks.  Everyone is different, but it is possible that there wouldn't be too much damage to the tissue.  I don't have any experience with thymoma or the temperature, maybe someone else here can help with that.  Hope that helps a little!

Char2010

Poetic - All the doctors told me that radiation after a lumpectomy is a given.  If you also need chemo, that comes before the radiation.  A friend had a lumpectomy followed by radiation, and then a year later had a mastectomy with reconstruction.  The radiated breast looks OK after reconstruction.

ruthbru

Yup; if you need chemo, they'll do it first, then the radiation (I believe that's because chemo should kill anything that's leftover anywhere in the body, and radiation would just target the specific area). If the cancer has spread to the nodes; many women who have a masectomy need both chemo AND radiation also. (So having a masectomy is not an automatic out from having radiation, a fact most doctors don't make clear). I had a lumpectomy, chemo & radiation. All went well. Best of luck! Ruth

edited to add that I have never heard of a fever as being 'normal' for BC. What does your doctor say?

sharonraew

Hi

 Sorry about your diagnosis.

 I had my lumpectomy June 7th but I am a lot older than you.  Also each person's experience is unique.   Don't imagine something is "wrong" because no one else experiences it.

I am searching my memory banks for my biology classes.  The thymus is associated with the manufacture of white blood cells and lymphocites I believe.  I know that lymphoma patients have low grade fevers constantly (my Dad had lymphoma).  So I do not believe the fever is any way connected to your BC but you should check in with your doctor about thymus problem.

poeticrevolver

Thank you all for your wonderful responses! I truly appreciate it!

Sharonraew- my docs for many months were concerned about me having lymphoma, actually it's still a possibility, listed as a differential diagnosis. The mass in and around my thymus gland , though it looks like a thymoma according to the thoracic surgeon, may actually be something else. They won't truly know until they do a thymectomy and get the mass out and we get the pathology. I did have a bone marrow done months ago, it was done before the PET. It did show some slight abnormalities, though overall was normal.

I've read that lymphoma, in particular Hodgkins, can cause this type of mass in the thymus gland. And with me having low grade fevers for so long now, every day for 9 months now, I am worried that it could be lymphoma. I also have some other symptoms that are typical for lympoma. Had drastic weight loss, the fevers, daily night sweats, itching all over my body with no visible rash, and extreme fatigue. I also lost quite a bit of my hair. It just kept falling out.

You know, I think I need to just stop all this worrying, and chill out. I need to lean on the Lord for peace and strength. We won't know anything about the bc, the thymus mass, or any of this situation until the surgeons get in there and test the tissue. So, I need to pray for patience. I just hope everything is early and easily treatable. Maybe some of the symptoms are from my lyme disease?...

I just want to feel beter, and be well!

I have three children and a wonderful husband that I need to get well for. I miss getting out and doing things with them. I've been pretty much housebound, and stuck in bed for 9 months.

I'm just over it!

Oh, Twinn Mom-wow, def some similarities! Sounds like you're doing well!  If I may, were you initially dx with DCIS along with IDC? Or did they find it during surgery?

Thanks again to all of you for your support!

I wish you all the very best!

ruthbru

Let us know how it goes; no matter what, you feel better once you actually know what you are dealing with and can get started with whatever treatment you need to do to GET RID OF IT, and back to wellness. And Lyme Disease can cause all sorts of strange symptoms.....one of my friends had it and she said she felt like she was on some sort of hallucinogenic drug for months, she kept telling people she had 'Dutch Elm Disease'........All my Best! Ruth

Twinmom77

poetic - They found both the DCIS and IDC when they did the biopsy - the IDC was completely gone after my lumpectomy.  But you're right - I am doing great!

I hope this week before surgery goes quickly for you so that you can get some answers.  I'll be thinking of you and I'd be glad to answer any other questions if I can!

poeticrevolver

Thank you all for being here for me!

If you all don't mind another question, It's something I'm just clueless about...

Today I went for my preop appointment. Everything went pretty well. However, they said that one of the first things they will be doing when I get there is insert wires. What wires? I've been looking this up and can't find any answers.

Do any of you know what they are referring to?  I feel silly asking, but they spilled so much info on me, and my poor husband was falling asleep during the appointment, I was so embarrased! I just wanted to get the papers signed and go! I did ask questions (while holding my husbands head up)(lol!) but this is one I forgot to ask.

FYI-my dear loving husband works for ups. He works in the very early morning hours. He has been doing so much, and has been quite overwhelmed with this. We have three children, and they are a handful! Plus he takes the very best care of me:-) He always goes with me to my appointments,and I usually make them for later in the day, for his sake.

It was just kinda funny, the anestesia doc got a good laugh out of it! He understood though.

After my appointment, wow, it all seemed weird. Like, it's official now, I have bc. I'm having surgery next week. I did have a little emotional breakdown today. I quess I've been holding it in a bit. I just don't want the kids to see me so upset, or scared.

I keep telling myself, and others , that I'm going to be ok. I believe that I will be. There's just that little nasty emotion called fear that has been poping up more today.

I've always told myself that God will not give me more than I can handle. And I'm trying my best to stand on that, to truly deep down in my heart have faith that he will get me through this.

It's hard. I'm sure you all can relate to how I'm feeling.

On a positive note.... My family has offered to pay for me, my hubby, and the kids to have  family photos taken  of us at our, and my, most favorite place, the beach! Well, as long as it does'nt rain! This will be our first family portrait, and I am so excited!

love to you all!!

Twinmom77

Hey there,

As I understood it, the wires are inserted to sort of guide the surgeon to the right area.  In my case, they put me into the mammogram machine took a pic and then I had to stand there, still in the machine, while the radiologist inserted a wire on either side of the lump (I'm guessing that's approximately where they were, I couldn't look cause those kind of things make me nauseous!).  Then they took another mammo pic to make sure they were in the right place.  

At first I thought, How could the surgeon NOT know where the right area is - you can feel my lump for pete's sake!  But then I realized there is a lot of microscopic bits of cancer so of course they wouldn't be able to tell if they got it all without those wires marking it.  The wires are very thin and they bend them and tape them down to your skin, so it's not like it's this heavy wire sticking up out of your breast.  It's not fun by any means, but it's not a horrible experience either and it went pretty quickly.

Sounds like you have a really supportive and caring husband and family.  Having pics taken sounds like it will be fun and maybe take your mind off of things for awhile.  The fear still occasionally pops up for me, even a year later, but they're more like small bad moments instead of full bad days.  I can't tell you when my last "down" day was, it's been that long!

When you feel up to it, let us know how surgery went for you.  Hugs and good luck!! 

ruthbru

If you aren't already doing so, get a notebook and write down all your questions ahead of time, and check them off as they are answered (otherwise they go right out of MY head, anyway) & either you (or your DH could jot down the answers too. Don't be afraid to ask or feel dumb about asking anything, you are the 'customer' and the main player in this experience (everyone else is your support staff). Also ask,"When there is a question I have later, who do I get ahold of to answer & and how do I reach them?"I found the nurses to be the best, most available contact persons & made quite a few calls after appointments, because there is no way to process it all right on the spot. Best Wishes. Ruth

Twinmom77

Thinking of you and hoping the nerves aren't getting to you too much today!  You'll do great tomorrow!

ruthbru

Let us know how you are doing. Best of luck! Ruth

SunDiego

Might I recommend using Evernote (free for lots of bandwidth) to track the progress of all appointments, online research, voice recordings (tape the consultations), articles, notes - EVERYTHING!  You can download it for FREE on your PC, MAC, iPhone, iPad, Android phone, etc - then it all syncs up to the 'cloud' and makes it VERY easy to keep track and tag all the craziness that will arise. I've found it to be INCREDIBLY helpful in organizing things. www.evernote.com

poeticrevolver

Had my lumpectomy today! Boy am I sore and so bruised!!

So, overall, it went pretty well, i guess.

The first part was pretty painful for me.

The surgeon used both the radioactive injection and the blue dye. They put me through about an hour of scans after the six injections in the left breast. It showed many lymph nodes lighting up. The tech made little x marks for each area.

So, after the surgery, I found out that she found 3 positive nodes for cancer. She removed all 3. I have no recalection of speaking with my surgeon, so I made sure to have my loving family there to get all the news.

I have two incisions. One in the armpit area, about one inch long, and the other on the underneath and outer rim of left breast that is about two inches long. Wow, I did'nt realize it would be like that.

So, I will be getting an appointment to see her in two weeks, but she told my family that as soon as the pathology comes back she will call me asap!!

So, with three positive lymph nodes, and yet not knowing the rest of the pathology, i guess chemo is in the near future??

At least that's what my understanding of it is. Please correct me if I'm wrong.

Thank you all so very much for your continued prayer and support! It means the world to me!

Love to all my sisters!

~jen

retrievermom

Jen:  If no one has mentioned ice yet, I will.  You will most likely be sore and swollen for awhile.  Little ice packs inside a soft bra or just against your body will help.  Some docs give them out as part of your post-op pack.  The pathology can be confusing.  Taking notes helps, as others have mentioned.  And don't worry about asking the same thing multiple times.  Your team realizes stress is affecting how well you can take information in.  Friends will be asking what they can do to help.  Don't be afraid to give them specific tasks.  Don't be shy or "brave" about keeping up with everything you've done before.  Lots can wait.  Thinking of you. 

ruthbru

Thinking of you too and hoping you are feeling a little better; frozen vegetables make good ice packs too. Chemo isn't fun but very doable, so try not to let the thought of it freak you out too much. And if anyone says, 'Let me know if there's anything I can do" have a list and give them something specific you DO need done before they can escape!