MIDDLE-AGED WOMEN 40-60ish

YaYa5

tori, i'll be in your pocket, too.  i know how scary this all gets, so just know that you're not alone. let us know how it went.  

nfranklin

Hi Tori I will be in that pocket with you tomorrow. Hang in there and know that we are thinking about you and praying for you.

sheila888

odie16

Tori - I too with be there with you tomorrow......

cmbear

Tori, I'll be there with you in spirit if your mammo is early--I get to visit my MO for my checkup. Should be nothing but routine. I'm hoping she will give her blessing for me to start the recon process. April 8 will be my one year anniversary from the end of rads and she promised then I could start thinking about it. . . 

If I could put my 2 cents in about the ILC and chemo debate. My tumor was as big as my teeny tiny breast. Surgery was not an option, neither lumpectomy or mastectomy. So I had to do neo-adv chemo--first 12 weeks of Taxol and then 4 rounds of AC. Six months from my original scan, my scan showed no visible signs of cancer. Total response. 

Dianarose

cmblastic- I wish I could find studies on ILC when there really isn't a tumor so to speak, but little microscopic specs all in the tissue.

I hope you get the ok for your recon. Did you have any positive nodes? I hope you have a happy anniversary day on the 8th.

Iwarstler- I am in Maine and the tissue is being sent to California so I imagine it will be awhile before I get the results. The IDC was negative it's just the ILC that I don't know about yet.

My underarm has not filled up again yet. She wrapped me with some compression yesterday after she drained it. I hope this is it for that problem.

Mimi8

Hi Elimar,

Thank you for your reply! I love this site!! It really surprised my DH and me to be told that I could elect not to have the axial node surgery. We knew about the Z-11 study and were going to ask my BS about it. The thing that has me worried is the people who had lumpectomy had radiation too but I didn't and hopefully won't. I never thought I'd have this decision to make by myself. My onc tells us that my nodes are probably clear and my BS thinks so too. They say the nodes left in there will do their job. Is this enough to bet that chemo will get it all? I see my onc today, have to tell the BS today or do surgery on Monday. I'm sweating this out!

Hugs and blessings to all!

Mimi8

ToriGirl

Ladies,

My pockets were so full this morning!  THANKS FOR SHOWING UP!  I swear I heard all of you giggling too!

Got the "ALL CLEAR" on the bilateral diagnostic mammogram...yay!  No calicifications...nothing that looked even a bit unusual...So thankful that I didn't have to wait for results either... 

I have to go back in 6 months, but I'll cross that bridge then!   

I love you ladies..thanks for being my cheer squad!

Tori 

lisamarie68

Tori.... Woo Hoooo doing the Happy Dance for u .... thats wonderful news .. sorry for giggling so much just felt that all was good .... xoxoxox

Dianarose

bs called this morning and said the ct showed small nodules in both lungs. WTH- when I had the biopsy the MO said stage 1, had the lx went to stage llla with 4 pos. nodes, and now possibly stage 4. I give up. I can't take anymore. She said she is setting up a pet scan and if that is positive then I can't have the bmx. She said I would be treated with chemo and hormone drugs. I want the breast that is full of cancer off my body. I don't understand this. Maybe someone can help me out with this. I am at the end of my rope and ready to say the hell with it all.

NativeMainer

Dianarose, you CAN have a mastectomy even  if the stage changes.  The big question is will insurance cover it.  Even so, you can make some sort of payment arrangement with the surgeon and hospital.  It would be well worth it for the peace of mind.  The medical community has taken the position that all women want to keep their diseased breast(s) and are opposed to mastectomy; the reality is quite different.  This whole diagnosis and staging process is full of surprises, many of them not nice, and is a real roller coaster ride.  I understand how you feel.  I wish I could do something to take some of the pain from you.  We're all here for you. 

madpeacock

{{{{dianarose}}}} - Stay strong. In your situation, I would want it gone too. I would gladly take some of your stress if I could. 

Dianarose

nativemainer- she didn't even mention insurance. I wish I never let her do any of these test until I had my surgery. I almost refused it yesterday and now I regret it. She wanted me to have the tests because of positive nodes but so many of the ladies with stage IV did not have positive nodes and yet had mets. It really makes you wonder how reasurring is it to have neg nodes.

Madpeacock- thanks for wanting some of my stress. The only person I could think of that I would even want to share this with is my ex. My 12 yr old says his father suffers from germaphobia. He says his father needs to live in a glass house. Unfortunetly he told these things to his father and was in trouble. It's an age thing. He wanted me to write a note to his teacher this morning making up an excuse for not doing his home work. He said it wasn't his fault becasue he suffers from short term memory loss. He's getting more creative, I'll give him that. I didn't write the note.

Thanks to all of you for your support. I hope I will someday get to post something positve.

elimar86861

Dianarose,  Your reaction is SO normal.  Take a deep breath and give yourself time to process everything  Let's not jump to Stage IV just yet.  In other words, let's keep some hope that those nodules don't show any uptake on the PET scan and you can go forward as planned. 

Meanwhile, if you are not able to keep your mind from doing all the "what if" thinking...you may want to go on the forum "Not Diagnosed with a Recurrence or Metastases but Concerned" which has many Stage IV's answering questions.  I really do not know why docs do not remove a primary tumor on Stage IV's.  Maybe someone has been in your situation.

Let us know when you are going for PET.

elimar86861

cmb,  Thanks for your account of doing chemo with ILC.  We may not have all the answers here, but with telling our stories, it sure makes other women ASK MORE QUESTIONS!

ToriGirl, Woo-hoo!  That's the kind of mammo that can put some Spring in your step...

                                    

lisamarie68

Dianarose , I have no idea what to say .. except if I were close by I would give u a great big hug .. I do know that I can listen if ya wanna vent ... 

sheila888

Dianarose....I'm sending you a big hug from NY.

♥♥♥♥

Dianarose

My MO just called and said that it is a good sign that there are nodules in both lungs. More of a sign that possibly it is scar tissue. I had trouble with scar tissue after radiation with the other breast but it was only in the lung on the side they radiated. I am still not convinced as she has not seen the ct and said I should have the pet. She said if it came back bad we would then discuss my options as far as the bmx. I told her I want them gone regardless of the results. They are why I am in this mess to begin with. I think I will have to go into denial over the weekend or I will go nuts.

Thank you all for letting me vent and all your kind words.

elimar86861

For those who like research...

Intratumor Heterogeneity and Branched Evolution Revealed by Multiregion Sequencing

You don't have to be an oncologist to READ like one.  Check this out from this month's NEJM.  (What you don't read NEJM regularly?  Me neither.  I do have a scientist in the family that gets paid to read various journals, so let's reap the benefits.)  It's a little jargon-y, and the study pertains to kidney cancer BUT what it is saying is that when you have cancer, you actually have cancers, not just one type, but several.

It certainly could explain how some breast cancer seems to "change" pathologies.  Or why some people get total response to chemo to the point of being NED and others barely get any shrinkage at all.  It also makes you wonder about the one slice that got looked at for an Oncotype test, and what the rest of the tumor looked like.  It makes me wonder if Tamox. is enough for every cancer cell I had, or if any other varieties got left behind?

Well, again, I know this is kidney cancer and not breast cancer, but I have not read anything like this before.  Maybe there will be investigation along these lines for B/C.  Stay tuned.

Dianarose

Elimar- I am glad you explained what it meant prior to me reading it. I agree with you that it doesn't make sense how they do things. I was told that they would treat me according to my biopsy and that cancer (idc) was her2- and then the cancer from my lx was (ilc) with maybe Her2+. That one got sent out to a different lab. So how do you treat someone with multiple things going one. You can't treat one and ignore the other if they would be treated differently if it were only one type. It does make you wonder if maybe there was something else that didn't rear it's nasty head at the time of biopsy or surgery but is left behind. For what they charge for the Oncotype test they should test a lot more tissue samples.

nfranklin

Dianarose: I know what is like to want that diseased part of the body gone. Here is a big {{{{{HUG}}}}} from TX.



Tori: I am glad things turned out good!

Dianarose

Has anyone heard from sherri? I hope things went well for her.

Nfranklin- in your signature line you stated that you have mets. Is this just in the nodes or some were else? If you don't mind sharing that is.

lisamarie68

Dianarose , Sherry is on the march surgery thread and she seems to be in good spirits and doing well ...

nfranklin

Dianarose: Don't mind at all sharing. Just in the nodes.

Dianarose

nfranklin- did your doc's put you through tests from hell like they are doing to me? I didn't do well with the ct scan and I read that the pet scan is way longer. After they put the stuff in the iv you have to be still for about an hour and can't even talk (that will be hard) and then the scan takes about 30 min. I am going to have to take something before I get there. They are making me have all these test because of the 4 positive nodes. I think they should let us get past one issue before they look for another.

elimar86861

nfranklin,  I don't want to downplay the seriousness of B/C being found in your nodes but, on BCO, the women put mets in their Dx line if it is distant mets.  B/C in the nodes, technically, is "regional metastasis," but since that info. is already given its own place in the Dx line, it is like stating it twice, so for less confusion everyone just uses mets for what has gone beyond the nodes.

Mimi8

Binney4, I'm a newby age 61 who has been reading your posts. You make so much sense and know so much that I'd like to ask you a question. I have IDC, Grade2, 3cm tumor, ER+ PR+, HER2- had a left mastectomy with a TE. SNL took 5 nodes, 1 of which was not a SNL but was positive with 200+micromets.



My BS insisted I have an axial node dissection to see if there were any more positive nodes. My Onc thought there would be no more cancer and had me take a PET scan last week. It was all negative. In the meantime, my BS goes to a big pow wow with heads of major cancer centers. He put my case before some of his contemporaries and they all agreed not to subject me to the axial dissection since I would be having chemo anyway. Now, he strongly suggested I not have the axial dissection but made it my decision ( ie fear of lawsuits) to have the surgery or not.



i had just gotten my head around having the surgery so this really threw me! I'm shocked and scared either way. I posted this and Elimar wrote me a private message saying she knew this was a hard decision and maybe I should ask you. Anybody else doing this? Thoughts? Thanks for listening.

Hugs and blessings,

Mimi8

Sherryc

Hey ladies I am home from the hospital.  I tried to read and catch up and then just said too heck with it, way too many pages.  Dr. said surgery went very well.  It was 4 1/2 hours.  Have felt good but having pain.  I don't think my rt breast is draining properly so will call the Dr first thing in the morning.  Thank you all for being in my pocket.  I appreciate it and will keep  you posted.

nfranklin

Eli Mar: Sorry about mets mistake, there is still so much of the language of this disease that I still don't understand.

nfranklin

Dianarose: I have had so many test, I have had all of the test you mentioned, was called in today for a echocardigram, I see my Onc next week for results. I am trying to figure out what it all means and trying to understand what all is happening in my body..... so far I am still reading and researching and learning from all the people on the different sites.

Thanks everyone for being brave and for sharing. Hang in there everyone, because I really need you guys, this is so helpful for me, because I feel like I am just muddling through.