The news isn't good

naiviv

Hopeful

I had IDC and 1 node involved, G3. Once you know the pathology from your biopsy, you should/will have choices.

I had choices, I could have my chemo before or after surgery. I chose surgery first, I wanted it gone.  I had the option of lumpectomy ( was told I would have to have radiation if I chose this), I chose Nipple and skin sparing bi-lat mastectomies (no radiation, I was re-evaluated for rads at the end of chemo and RO said not necessary due to micromet, ALND and MX).  Because of the positive node, I was told I would have the ALND. I lost 14 nodes.  I was not given a choice for the sentinel node biopsy.   I am a triple positive, My chemo was TCH.  6 treaments 3 weeks apart and the H weekly.

I just now have some range of motion difficulties after the LD Flap.  I have very good ROM before.  I started seeing a Lymphadema specialist right after Mastectomy and ALND to learn how to care for that arm and avoid L. (so far so good). I start PT this week.

There are new drugs now, from when I was DX.  I wish there was a vaccine also.  I know there are several tests that are ongoing.

Huggs

Vivian

Hopeful82014

Vivian, thank you from the bottom of my heart.

Hopeful82014

Vivian, was chemo a given in your situation? I think I can face just about anything but that with equanimity.

Beatmon

Dear Hopeful: your hubby will be with you at the appointment tomorrow, right? And remember, if you don't feel "right " with this breast surgeon....find another. It is very important to trust and have a good relationship. They will help and refer you to an oncologist ......but if you have one you want, speak up.

I know you are trying to protect your family by your posts, but by one of your statements.....it is time to think about YOU......let your loved ones take care of you for a change.....or at least acknowledge what you are going through, especially your sister. You can decide who to tell, but if you need a hug from them, go ahead.

You will still be anxious after tomorrow, but believe all of us, once there is a plan of some type in place, it gives you a type of peace that you are doing what you can to get rid of the beast!

Let us know and we all love and support you!

naiviv

Yes, Hopeful, I received Chemo (TCH x 6) and still am on Herceptin (one year) And while it wasn't a walk in the park, it was very doable.  There are many medications that help ease the side effects. There is icing of the mouth and nails to avoid mouth sores or nail lifting.  There are cold caps to help you keep your hair.  Once you know what is being recommended, you can join that thread and start with other ladies who are starting same as you. You can also read back to what was done by other to manage side effects. By far the first chemo was the scariest for me, because I did not know how I would react, once I knew what to expect you put a plan in place to help avoid and to rest as much as you need to.

If you read below our posts you can read our diagnosis, treatments, surgeries etc.

Chemo for me was important. Althought I had a clean PET scan and my tumors were fully removed in surgery, I still had a micromet to a lymph node. Chemo was to take care of any errant or tiny cell, that may have been traveling in my blood or lymph system or taken up residence somewhere but too small to detect.  I am glad chemo was available for me.  I would imagine soldier cells, seeking, conquering and destroying any errant cells in my body.

In your pocket tomorrow,

Vivian

Hopeful82014

Thanks Vivian and Beatmom - I appreciate your advice and am glad to have you virtually in my corner.

Vivian, the info. in the signatures is useful and educational - and sometimes very sobering. I don't know how some of you can stay as strong as you are. I am normally a tiger but I'm not finding it in myself this time and it's frightening. I suspect it will be better once I have some answers but it seems as though there are always more answers to wait on - scans, etc. 

It's not easy to put my husband through this as well.

Hopeful82014

Beatmom -

Thanks for the input regarding the appointment and the importance of trust. I'll definitely not settle for anyone on my team that I don't feel good about. My primary gave me the name of an oncologist but his 2 offices are both pretty inconvenient and he doesn't specialize in breast cancer. Do you have a sense of just how specialized one's onc. needs to be AND how important location is? Is this someone I'll see occasionally, frequently, have treatments in their location? Despite all the research I've done, I'm still kind of clueless! 

Mischief46

hi Hopeful, just wanted to bop over and say I'll be thinking of you tomorrow.  Knowing what you will be dealing with will  be a great relief even if it is a little scary.  I'm praying for the best possible results.  

Jesusisthekey

Hopeful:

I just felt moved to pop on here and let you know that  you can go through whatever is necessary to get to the other side of this temporary tunnel.  You keep your eyes on that tiny little speck of light ahead and watch as it gets bigger and bigger.  Before you know it this will all be your testimonial for someone else who unfortunately has to go through it.  You will wear the title "warrior"  God bless you. 

Hopeful82014

Thanks a ton, Mischief. I'll be thinking of you as you prepare for your implant surgery, too.

Beatmon

I personally haven't met a onco. that specializes in breast cancer only, but I bet in the larger metropolitan areas there are such specialists. Yes, you do have to see them a lot, especially at first. At least monthly, even if all is well. Then they change you to quarterly,etc as time goes on if no problems appear. Where my onco. practices, the chemo is one floor up. The practice is connected to the hospital so is very convenient for testing. Do any of your friends have any one they can recommend? The breast surgeon will also recommend someone. But, remember, lots of people get 2 opinions. My sister in law changed breast surgeons before her biopsy and was very happy that she did. 

I will certainly be thinking of you tomorrow and be in your "pocket" as we call it around these boards!

Mischief46

my BS set up appointments for me to meet the oncologist she primarily worked with.  ( MO and RO) She did say if I wasn't comfortable with any of them she would gladly give me a new referral.  But I love my MO, in fact I saw him today. Good thing because you do see them a lot. 

Hopeful82014

I finally met with my BS this a.m. - it was a very long meeting, which is good, in my book. I'm scheduled for an MRI Friday, then PET and bone scans on Monday, with followup to review results on Tuesday a.m. 

The news is pretty good, as these things go - ER 100% positive, PR 88% pos. with strong nuclear cells (not sure what that last phrase implies) and HER2 negative. 

The treatment plan's still up in the air until all the rest of the results are in but for now it looks like a lumpectomy and dissection of 6-10 nodes. That part's not pretty (I'm concerned about lymph edema) but I'll live with it. (So to speak)

 I'm definitely in a better space than I was yesterday. Thanks to each of you who encouraged me through the past week (and especially since last Friday) and who had me firmly 'in your pocket' today. I hope some of you got some good news today, too, or will soon.

Nancy2581

hi hopeful I have been checking the board looking for an update.  I am glad the meeting went well and you feel better.  I am also 100% ER positive but 58% PR positive.  

Nancy

Beatmon

Dear Hopeful: it does help to have a plan in place doesn't it! Keep us informed about how you are doing. There are lots of women on these boards that are very sharp and can answer lots of questions. Start your binder with all of your results in it. I asked my insurance for a nurse navigator which has been helpful. She hasn't been able to help with approval of tests, but can see screens that regular customer service reps. aren't able to see. 

Mischief46

HOpeful, So glad you are in a better place now and have a plan. It makes it a little easier to breathe when you know things are moving forward.  Good luck on the MRI and scans!

Hopeful82014

Thanks for your warm thoughts, Mischief. Good luck tomorrow - what time is your procedure?

Regardless of when it takes place, I'll be thinking of you all day. Hope the outcome is beyond satisfactory.

naiviv

Hopeful,

Glad you are feeling a bit better.

Make yourself a note to ask your BS  when do do have your surgery that pathology is done on you nodes  also to check for ER,PR and Her2 status.  This will confirm  if any of your nodes are positive that they have the same makeup as breast IDC.

Take care

Vivian

Hopeful82014

That's a very interesting point, Vivian, that NEVER would have occurred to me - thank you so much! 

They've already biopsied the sentinel node (positive) so I'll ask if the tests were done on that one.

It occurred to me in the middle of the night to wonder why the PET scan doesn't show whether the nodes are showing hotspots - do you know? It seems to me that if that info's available prior to surgery we might be able to avoid the lymph note dissection? There must be a good reason for this but I have no idea what it is.

Lily55

THey normally take several nodes - in my case I had 14 nodes taken out, 7 were pòsitive for cancer.......I have had very mild swelling occasionally but nothing I would call proper lymphoedema but I was very strict with myself anout exercising that area immediately even though it was hugely painful, far more than the mastectomy was.  If I get hot now or do too much my arm can swell a little but I ensure I  do full stretching every day and that helps a lot...........

Your horomone status is really good new for you in terms of treatment options.....

Hopeful82014

Thanks for the insights, Lily. I am SO afraid of LE and even of the (potential)  restrictions involved in staving it off. This whole thing really sucks - and that's not a word I often use! 

Yes, I was really buoyed to learn the hormone status - it was the first good news I'd had in two weeks, so very, very welcome. The proliferation rate is pretty high, unfortunately. I still can't believe this whole thing. At this point if I can avoid chemo I'll be satisfied but I don't think it's going to work out that way. 

I hate the emotional roller coaster of this stage! 

How is the aromasin working out for you - is it tolerable?

Beatmon

maybe others can answer this question, if sentinel node is positive, why do you need other dissection done?? You already know where that moves you in protocol, right? So why the dissection. It seems that this is done by what part of the country you live in now. 

Hopeful82014

Hi, Beatmom - 

My understanding is that, knowing that one node is positive they want to check other nodes for malignancy (6-10 of them). I suppose if they find ca in those they go back and take more, but you've raised a really good question. 

I'm jotting it in my notebook for the follow up appt. on Tuesday. 

Thank you for raising the point.

Lily55

I make sure I do not put my arm in really hot water and carry antiseptic with me so that any slight scratch or bite I dab with antiseptic immediately, I refuse blood draws and blood pressure equipment on that side...... I have gone on short haul flights without wearing a sleeve -  ie 2.5 hours.  I was told no ironing ever again!!!  Have to say if I do a little ironing I can tell the difference afterwards and if I get really hot I can feel a little tight but other than those things I live normally.  I garden. live with cats and dogs etc.....

I won´t pretend the axilla area is really uncomfortable afterwards but do the exercises and it gets easier faster - take pain meds one hour before doing them.........and remember that they never remove all our lymph nodes and if you are healthy your body can find other routes to drain.........

Hopeful82014

Thanks a lot, Kay. That's very helpful. I'm definitely going to read all the links this p.m. and earmark it for an extensive discussion with my BS.

Nancy2581

I had one positive node when I had a sentinel node biopsy.  They took out 3.  I was worried I would then have to do an ALND.  I didn't they told me since the tumor in the one positive node was less than 5 mm and the other two were clear it was not needed.

Nancy

Beatmon

thanks, Kayb for the info!

Mischief46

hopeful, surgery went very well today. The nurse gave me a peek and they are smaller than my TE's and much softer, so I am happy.  Thank you for thinking of me today. I'll be returning the favor for you on Friday and Monday. This whole discussion on the nodes is interesting..it really must come down to where you go for treatments and their plans of action.  

I hope you had a good day.  

lyzzysmom

Mischief, I think things do tend to vary by area and by surgeon. I notice your dx is not that dissimilar to mine but don't know how large an area of LCIS I had, also my BS in Boston is affiliated with the large centers in that area and is very "into" sentinel node biopsy methodology, hence I was fortunate to only have the one node taken. Also lumpectomy was suggested even with ILC so it all really does vary, although I never asked about mx. I did not mind the radiation at all apart from some fatigue. It really was OK for me.

Hopeful, just wanted to add all my best wishes and hope for the very best possible results. The ER/PR+, HER2- sounds like very good news.

Hopeful82014

Hi, Kay - 

I'm not sure what is meant by "clinically negative before sentinel node biopsy" but other than that, yes, it pretty much does fit my DX so far. 

I'm copying the above, as well as the guidelines and will have a thorough discussion w/my surgeon on Tuesday. Hopefully none of the tests we're doing between now and then will affect the situation negatively. 

Many thanks for your help, Kay.