Dis Breast Cancer Survivors Part II -GAGWTA!

[lookingforward]

Denine, I've posted before that the same thing happened to me - after I just ended treatment. The first mamm afterward on the non-BC breast showed a spot. In fact, my surgeon told me, "I'm sorry, it looks like a new cancer". I was devastated, and thought, if this cancer grew through all this chemo I had, I'm a goner. Biopsy was negative, but they wanted to go ahead with an excisional biopsy to be absolutely sure. I waited several weeks because I just wanted to enjoy my kids' birthday, and it was agonizing. I showed up for the excisional biopsy and the spot was gone. My surgeon then and there gave me the option of taking the whole area out, but I decided to wait 3 months for a re-check. The spot has never returned. We think it was a premenstrual change. I was p'd at my surgeon for scaring me like that (and the original radiologist at my medical practice). I now get all my mamms and MRIs at the hospital (mine).

An MRI is actually not definitive. Only a biopsy is - because a pathologist examines the actual tissue under a microscope. There are many false positives with MRI, which then get biopsied. In your case, it's difficult and unreliable to biopsy an area you can't definitively find. I'd probably compromise and ask for a 3 month re-check, and/or get another opinion, possibly an MRI (which may or may not be helpful). Scar tissue can be tricky.

Good advice. I had a reduction and the thing that got me really angry was the fact that they kept attributing slight changes to "surgical changes" simply because I had the breast surgery years ago. (1996). I learned later that many of my fellow survivors were MRI'd early on when I wasn't because they thought they had an explanation for my areas of concern. SO...the women who were MRI'd right away were stage 1 and I found myself at stage 2b. The mammo had been showing two areas of calcification for years but they appeared unchanged. Surprise, surprise when they estimated tumor size on digital mammogram at 1 cm...and up until the biopsy came back my not so brilliant surgeon kept saying it was surgical changes/scar tissue.... and the MRI showed it to be over 2.5. It turned out to be 3 cm. Scary.

Another issue is dense, larger breasts. They are harder to read, right? Oh well, I wish I had had the MRI sooner, but at least it was still on the cusp of "early stage". GAGWTA!

 

[jackskellingtonsgirl]

GAGWTA, ladies!

I just spoke to Mom. She mentioned that her fist appointment with the oncologist after her surgery isn't until July 18. That's only 2 weeks before our trip.

DH and I are working through an "exit strategy" for me to leave WDW if they start some sort of treatment on Mom and she has a bad reaction. I HATE that this has dragged on for so long. I guess the thing to do now is just hope that her lymph nodes are clear so hopefully her follow up won't be too horrific.

Do you guys know at what point she will hear about the nodes? I guess if they are obviously bad then she will wake up from a mastectomy instead of a lumpectomy, but if the surgeon isn't sure then how long does that pathology take? "A week" seems to be the favorite answer for lab results so far, but I am hoping it won't be that long!

 

[Pea-n-Me]

I guess if they are obviously bad then she will wake up from a mastectomy instead of a lumpectomy,

Is that what they told her?

 

[Pea-n-Me]

I had a reduction and the thing that got me really angry was the fact that they kept attributing slight changes to "surgical changes" simply because I had the breast surgery years ago. (1996). I learned later that many of my fellow survivors were MRI'd early on when I wasn't because they thought they had an explanation for my areas of concern. SO...the women who were MRI'd right away were stage 1 and I found myself at stage 2b. The mammo had been showing two areas of calcification for years but they appeared unchanged. Surprise, surprise when they estimated tumor size on digital mammogram at 1 cm...and up until the biopsy came back my not so brilliant surgeon kept saying it was surgical changes/scar tissue.... and the MRI showed it to be over 2.5. It turned out to be 3 cm. Scary.

One of the worst cases like this that I ever saw was a very young woman (20's), the sister of a friend. She had problems immediately post op from a reduction - wounds not healing, infection, etc - one problem after another. As it turned out, she had breast cancer, but nobody realized it. I couldn't believe it when she passed away. This was many years ago, but I know the timing with the surgical issues caused a lot of confusion.

 

[jackskellingtonsgirl]

Is that what they told her?

It seems like that's what they said. The plan is for lumpectomy, but if things are worse than they anticipated it will be mastectomy.

I am not sure she really understand the sentinal node dissection, either, because she was telling me they aren't going to remove ANY nodes. She thinks they are just going to inject the dye and then look at the nodes, but not take them out unless they appear to be cancerous. That's not possible, is it? I read the procedure to her word for word from breastcancer.org but she said that isn't how the surgeon explained it to her. Of course she was there by herself, so no telling what was actually said. The way I understand it, there is NO WAY to be certain about the nodes unless they look at them under a microscope. Is that how you all interpret it as well?

 

[Pea-n-Me]

I had a sentinel node biopsy the same day as my surgery. But for me, the plan was for lumpectomy regardless of node status, that's why I was asking. (I suppose things could have changed, but that would seem unusual.)

Usually, the surgeon removes the breast tumor, and the pathologist right then checks it for "clean margins", ie an area completely surrounding the tumor which has no cancer cells at all, with the idea if there any remaining, they can still grow. With clean margins, that's it. If there aren't clean margins, they have to go back in and try and get them again. If they can't, then they opt for mastectomy. (It helps to be large breasted when more tissue needs to be removed. Small breasted women sometimes have a disadvantage as there may not be enough tissue to work with.) Fortunately, I had clean margins the first time. I know many others who didn't, but only one very small chested friend who twice didn't get clean margins and needed the mast.

With the sentinel node biopsy, they inject a nuclear marker into the breast tumor area with the idea that the pathway the marker takes will lead to the first, ie sentinel, node, which then "lights up" on the scanner and they then mark it. During the surgery, the surgeon removes it, and again, the pathologist checks it right then and there for cancer cells. If there aren't any, I think they don't check any more (or maybe they take out another one or two in the pathway, not sure). For me, mine was positive, so they took out 7 more to check, and those were clean. In the old days, they took out all lymph nodes. I remember as a young nurse caring for women with absolutely enormous arms, swollen and hard, the size sometimes of a thigh - because of lymphedema, which can develop after node removal. So the less nodes out, the better to avoid that. (Some places and surgeons still don't do sentinel node biopsies as they either don't have the training, equipment, or don't believe in it's reliability.) I have chronic mild lymphedema in one arm with the 8 nodes taken out.

 

[jackskellingtonsgirl]

Thanks, Linda! They made some distinction between the mastectomy and the lumpectomy as far as what treatment she would need afterwards, but that was at her initial biopsy, so I don't know if that even still applies.

It doesn't sound like not removing ANY nodes is an option, so I am going to stick with my story that they will at least take out the sentinal node regardless, and go from there.

I am more worried about her follow-up than I am about the surgery, but I guess I should be considering the inherent risks of surgery, too.

 

[MerryPoppins]

Hi. I'm running through. Life has been hectic yet again this week. DD is home. She won't leave again until sometime early in July. I'm glad to have her around again.

We had sad news yesterday. The 18 year old son of our friends committed suicide. He just graduated from high school with his whole life ahead of him. So sad. I guess it struck me even harder. We've lost three dear friends in the last couple of months. All three had long full lives, but I'm sure would have loved to have had longer if they could be healthy. And here a young, healthy boy cut his life short. Hard for me to understand.

I'm following all your stories. I celebrate with those of you who are getting good news and cross my fingers with others. Hopefully I'll be back more soon...once my computer is back in working order. I hate typing on this laptop. GAGWTA

 

[Sha]

Hi. I'm running through. Life has been hectic yet again this week. DD is home. She won't leave again until sometime early in July. I'm glad to have her around again.

We had sad news yesterday. The 18 year old son of our friends committed suicide. He just graduated from high school with his whole life ahead of him. So sad. I guess it struck me even harder. We've lost three dear friends in the last couple of months. All three had long full lives, but I'm sure would have loved to have had longer if they could be healthy. And here a young, healthy boy cut his life short. Hard for me to understand.

I'm following all your stories. I celebrate with those of you who are getting good news and cross my fingers with others. Hopefully I'll be back more soon...once my computer is back in working order. I hate typing on this laptop. GAGWTA

that is sad to hear. Will keep the family and friends of that young man in prayers

 

[jackskellingtonsgirl]

Merry - How sad! His family must be devastated! Lots of good thoughts to them!
Glad your DD is home for a bit!

 

[Iluvthemouse]

Thanx all for the support. I am just scared.
I have a breast ultrasound scheduled for tomorrow.

I know all the stats say 80% are benign but I know 4 women between 41-58 all positive for breast cancer. In my mind the stats are 0% benign. KWIM? Its hard to get past that.

I do know the lump changes when I am PMS'ing. It gets bigger and more sore. Right now it feels smaller.

 

[snappy]

Merry, I too will pray today for the young man and his family. Very tragic.

Iluvthemouse, I hope we have not scared you to death with the advice on doing more diagnostics. That said, I am relieved to hear you are having further testing. I just know limbo is not a fun place to be.

If you can feel the lump yourself, I am not clear on why they are not doing a biopsy. Maybe the stereotactic one won't work, but I had a needle biopsy by a surgeon in her office on my other (unaffected) side when she felt something. Thankfully it was benign but it had not shown up on the screening mammogram nor on subsequent diagnostic mammograms.

It was not a particularly fun biopsy but at least I knew for sure. It took a bit of courage (all this stuff does) especially since I had just met this doc and she feels something immediately during the exam but it was over with much much faster than the stereotactic core when they checked out multiple areas on the other side. I will say it was not as bad as the multiple biopsies I have had on my thyroid nodules over the years. Those are just literally a pain in the neck. LOL.

Keep us posted after tomorrow, please.

Hello to Sha in Germany!!!

 

[Iluvthemouse]

If you can feel the lump yourself, I am not clear on why they are not doing a biopsy. Maybe the stereotactic one won't work, but I had a needle biopsy by a surgeon in her office on my other (unaffected) side when she felt something. Thankfully it was benign but it had not shown up on the screening mammogram nor on subsequent diagnostic mammograms.

I had gone to the OBGYN and she felt the lump and said she would "order an ultrasound to make sure it wasnt anything". I havent talked to any surgeon yet and really dont know the procedure yet. When I had my mammo in March they just sent a letter saying no abnormalities were found.

 

[jackskellingtonsgirl]

Thanx all for the support. I am just scared.
I have a breast ultrasound scheduled for tomorrow.

I know all the stats say 80% are benign but I know 4 women between 41-58 all positive for breast cancer. In my mind the stats are 0% benign. KWIM? Its hard to get past that.

I do know the lump changes when I am PMS'ing. It gets bigger and more sore. Right now it feels smaller.

I hope everything goes well tomorrow! We'll be thinking of you and hoping for the best!

 

[Pea-n-Me]

Merry

Ilovethemouse There are many encouraging things in your situation (nothing on mamm, hormonal changes, etc) Hang in there.

GAGWTA, and Happy Father's Day to all your great men in your lives!

 

[snappy]

GAGWTA, and Happy Father's Day to all your great men in your lives!

Here, here!!!!

 

[BeadyLady]

Thanx all for the support. I am just scared.
I have a breast ultrasound scheduled for tomorrow.

Stay positive! What did I hear once - don't bleed until you're shot. You will be fine! Go outside and do something you love, then you won't dwell on tomorrow.

Happy Fathers' Day to our wonderful husbands, sons and brothers who get to go through this with us and still love us!

 

[Denine]

Thanks for your replies. I was curious to know what you all had to say. The radiologist on Thursday seemed to "know her stuff". I was there for 1-1/2 hours even without the biospy. I am just not comfortable with the answer. I forgot to mention that when she was doing the US, she was looking in the 4 o'clock position. I said that I didn't remember the other radiologist looking in that area. It was more the 2 o'clock position. She said she was was following the notes and US picture from the previous radiologist. Now, I could be wrong and what she saw was in the 4 o'clock position and I didn't realize the wand was there, but it seemed she was in the 2 o'clock position a long time.

My parents were here today for a Dad's day cookout and they don't want me to wait the 6 months either. I will need to call my OB/GYN to see what she says and maybe I can ask about an MRI. I am dealing with the Cleveland Clinic though, so who knows?
I guess I just feel it is to easy to attribute everything to surgical changes.

Iluvthemouse: Good luck tomorrow. I am sure everything will go OK. From all my reading in the past week, it could be a cyst since it changes with hormones. But, better to be sure.

Merry: How horribly sad.

I will be back tomorrow. Hope everyone had a great Father's Day!

 

[Pea-n-Me]

Denine, have you seen a breast surgeon yet? That's who's really the "expert" in breast changes, not the OB/GYN, believe it or not. You should think about seeing one, who would then be "in charge" of this situation.

 

[lookingforward]

My beautiful mother had a stroke last night and is not going to survive. Hospice is going to take her breathing tube out tomorrow at 2 p.m.. She would not have wanted to live in a vegatative state. She went with me to every chemo and was my best friend. I am doubled over in pain...I don't know if I will make it. I can't concieve of life without her. She is not in pain, she is not aware. I brought her dinner last night at the hospital and we had a great visit. One hour after I left she had a devastating stroke and they tried to remove it in surgery but it was too large. She was a nurse, my father's wife of 50 years, the best mother I could hope for and a wonderful grandmother to five. She was my role model and my confidante. I am dying inside. Hug your loved ones extra tight and pray that she is at peace with God.