Update on my Mom: Post-Surgery Confusion

melynn44 · September 2016

My mom was diagnosed with breast cancer in early August. On 8/12, she went in for the meeting with the whole team, and all the info they gave her, I have posted in the profile thingie. I guess they don't give official Stages. But, they told her that if she was going to get cancer, she had the one to get. They all seemed positive, encouraged, and supportive. They said that the MRI did not find anything else anywhere in the breast or lymph nodes.

Fast forward to Friday, 9/2, which was the earliest they could get her in. They had suggested a lumpectomy, which she was all for. They were also going to do minimal radiation, localized for about a week. So, the surgeon went in, got the tumor, surgery went pretty well. Then, he came to talk to us, while she was coming to.

He said the tumor came out well, and that the margins were clear. (Great news). But, he also said they found very small micrometastatic cancer in one of her lymph nodes. They took out three to test, and I believe they sent them to be dissected/biopsied whatever. But, one for sure had cancer in it. So, she will be having full breast radiation now. What confuses me is how can the tumor have clear margins, but it also has spread?

For anyone diagnosed with IDC, did you have a similar experience or what are your thoughts on this situation?

Icietla · September 2016

Hi melynn44. So glad your mom got through the surgery okay, and with clean margins. From all the findings, it appears that hers was at early stage.

Any invasive cancer is capable of spreading to other tissues and sites. Besides by tumor growth, cancer can spread from a primary tumor's cancer cells getting into and being transported through the lymphatic system and/or the bloodstream.

etnasgrl · September 2016

The cancer can spread beyond the original tumor when tiny cancer cells escape or break away from the main tumor and travel to the lymph nodes or into the bloodstream, to a different organ.
Getting clean margins means that when the tumor was removed, surrounding tissue was also removed and the surrounding tissue was negative for cancer.
You can have clean margins and cancer in the lymph nodes because the tiny cancer cells break away from the tumor and travel.
I hope that makes sense?

Jiffrig · September 2016

she has exactly what I have. She will have to have chemo also, in addition to radiation of lymph node.

melynn44 · September 2016

Icietla, thank you so much. Yes, they verbally told her she was in an early stage, but on the actual report, they neglect to include stage. I've read/heard that some hospitals are going away from using "Stage" because of the confusion and misinformation that can result from it. I'm not sure if that's the case with my Mom's hospital or not. It's so confusing, because on one hand, it is listed as "invasive." On the other, they list it as Grade 1 and slow-growing. (Although, things may have changed with the recent discovery) For a lay person like me, the inconsistencies (at least in my mind) mess with my head.

etnasgrl, it makes sense, sort of. I am just not medically trained, so...it doesn't make a lot of sense. When I think of a bubble of liquid for example. If the liquid escapes, that means there must be a hole in the bubble somewhere. So, let's say the bubble is full of blue liquid, and you submerge it in water, you are going to see blue liquid trickling out of the hole somewhere from the bubble. That's the way I see a tumor, but again, I am a lay person. The idea of the bubble being completely in tact, but somehow blue liquid was able to seep out...just doesn't register for me.

God bless you, Jiffrig. I'm sorry to hear it. Do your doctors also seem positive about it? Yeah, I'm sure chemo is a distinct possibility/probability. It wasn't mentioned Friday after her surgery, but I'm sure it will be coming up in coming weeks. She doesn't have another appointment for 2 weeks, unless we hear differently, so I am sure we'll know more then. Good luck!

Side question #1: we are not litigious by nature, so this isn't why I'm asking. But, is there a chance that the three weeks it took for her to get a surgery done could have been the difference between nothing on the node and something on the node? I figure it's more likely the MRI was wrong than that it spread that quickly, but I just don't know.

Side question #2: is there a benefit or detraction between fast-growing or slow-growing? I mean obviously, if it had been fast growing since close to her 2015 mammo appointment, by her 2016 one, she would have been in big trouble. BUT, if she has a slow-growing tumor that has been growing for a long time, years maybe...that could be years that cancer cells have had a chance to break off from the main tumor. Is one better or worse news than another?

Jiffrig · September 2016

Your Mom and I are both going to be just fine. I have 2 wonderful daughters, like you, and that is the best "medicine". Your support is going to get her through this. I am half way through chemo and doing fine. It's a journey but doable. It's a shame they did not catch the lymph node before surgery. I had a core biopsy after they saw mine on mammo. Mine is small too and almost totally shrunk with chemo, but will still do surgery and rads.

inks · September 2016

melynn - having a miro met in one node does not absolutely mean that she will get chemo. If they do a Oncotype test they could get a better idea if she would benefit from chemo. I had 2 miromets in one node. It's impossible to say if waiting 3 weeks for surgery caused the cancer to travel to the node, but 3 weeks is reasonable time to wait for surgery.

BarredOwl · September 2016

Hi melynn44:

A better analogy would be a parking lot with thousands of cars in it, possibly only some of which have gas (are capable of moving). If a few cars drive away, you won't really be able to tell that occurred just from looking at the lot. This is especially so, if like in a growing tumor, new cars (cells) are being added to the lot (tumor is a collection of cells). Like cars leaving a parking lot, the individual cells leaving the site of the main tumor don't leave a trail from the tumor to the node. They leave the lot, drive through the lymph channels, and get stuck in the node (a way-station). This is a biological phenomenon.

Margin sizes are more of a man-made phenomenon, in that their size is typically determined by where the surgeon chooses to cut around where he thinks the tumor is. Here is an explanation of margins from this site:

http://www.breastcancer.org/symptoms/diagnosis/margins

Side question #1: . . . is there a chance that the three weeks it took for her to get a surgery done could have been the difference between nothing on the node and something on the node? I figure it's more likely the MRI was wrong than that it spread that quickly, but I just don't know.

Breast MRI cannot currently exclude possible lymph node involvement, because it may not detect limited involvement (e.g., isolated tumor cells; nodal "micrometastases" (greater than 0.2 mm and/or more than 200 cells, but none greater than 2.0 mm); or even nodal "macrometastases" (at least one metastasis greater than 2.0 mm)). In contrast, sentinel node biopsy ("SNB") is an axillary staging procedure that is designed for and capable of detecting limited node involvement as it is currently used.

It sounds like your mom was diagnosed on 8/12 and had surgery on 9/2, less than a month later. That is relatively prompt action. As you noted the tumor has been in there for years probably, and cells could have moved any time prior to surgery. Given the time-frame, the chance it happened since August 12 isn't that likely (remote even).

BarredOwl

Icietla · September 2016

Here is a link to a chart that VIP member BarredOwl has put on before to help other members figure out their staging:

https://cancerstaging.org/references-tools/quickreferences/Documents/BreastMedium.pdf

Instead of thinking of it as like a bubble (or balloon?) of liquid within another body of liquid, try thinking of the primary tumor as a particulate mass -- say, a clump of wet sand, for instance. For as long as it was within the duct structure where it originated, it was contained there -- an in situ tumor. Once it got through the ductal wall, it had spread into (or invaded) other type tissue, and its cells (like grains of sand from a clump of wet sand) became capable of being spread through the lymphatic system or bloodstream.

BrooksideVT · September 2016

I had a similar experience. My tumor had margins greater than 9 mm in all directions, but 10 isolated cells were found in one of two sentinel nodes. These cells, by the way, were not found by the pathologist in the OR, but only later, when the detailed pathology was complete (about two weeks, in my case).

Micromets do not necessarily lead to chemo. As your mom is ER positive, her onc will order an oncotype genetic test of her tumor. This test will predict her chance of recurrence after rads and while taking an anti-hormonal drug. It will also indicate whether chemo is indicated.

It will seem like forever waiting for the oncotype to be ordered. First, she has to meet with her onc, then the test takes several weeks. During this time, she will continue to heal from her surgery. Only when healing is complete can she move to the next step (rads, chemo, tamoxifen or AI).

Luckynumber47 · September 2016

I asked my BS to order the Oncotype test so my MO already had the results before I first met with her

Denise-G · September 2016

My mom was age 80 at diagnosis. She had a 1.5 cm tumor, but her lymph nodes were clear - Stage 1. She did not need radiation or chemo. Age has ALOT to do with figuring out treatment plan. My mom is now 83 and doing well. Sending my best!

melynn44 · September 2016

Jiffrig- God bless you and good luck. Obviously, like you, we wish it could have been caught as well. But, we try to look on the bright side that luckily, it wasn't so extensive that it was seen by the MRI or noticeable by feel. Trying to have a positive outlook here.

KayB- Thank you for your re-assurance. You are so right about what you are saying. Obviously, right now I'm caught between trying to be optimistic and preparing for a worst case scenario, so kind, realistic advice is very much appreciated.

inks- I know that at the consultation, an oncotype test was recommended and discussed. Our plan was to have it done, but we haven't heard anything yet from the doctors/hospital. Hopefully, it is being done.

BarredOwl- Thank you so much for that analogy. It makes sense. For a lay person like myself, I need those analogies, because I only think like I think, and sometimes, things don't make sense to me.

Icietla, wow great link! Thanks, that helps a bunch! Another great description for my one-track mind to be able to grasp, too.

BrooksideVT- Yes, feeling like forever is a recurring theme here. It seemed like it took forever for her to get her consultation, and for her to get her surgery, and for her to get the follow up appointment, and to start radiation. It seems like all we're doing is waiting, and in my mind, I think, "Is it spreading now? How far has it spread now?" We have a wedding and vacation planned for the end of October, so all this waiting has added even more stress to her, which sucks. She told them from the very beginning, "We have these plans," and they were going to try their darndest to get done by then, but it's starting to look less and less likely. That's why the 1 week targeted radiation was going to be so ideal. But, now...not so much. Obviously, she's gotta do what she's gotta do. And they've gotta treat her in the best way possible.

Luckynumber- man, that would be nice. Maybe when she goes in this week, they will already have that info for her. I hope so. We kind of operate that no news is good news at this point, but it would be nice to know if there is actual good news, too.

DeniseG- Wow, what a great result for your Mom. Sounds like your family has been through a lot. Good luck to all of you.

Only 4 more days till Mom's follow up appointment. I'm hoping we'll get some good news. (good-ish?) I won't be able to go, due to work, but wish I could. I'm hoping they can get the radiation started sooner rather than later. I'm rooting against chemo, but I want whatever is going to kill the cancer the best, and if it's chemo, then it's chemo. One other thing that's nagging at me...my mom coughs a lot. I don't want to say a TON. But, more than once a day. She said it doesn't feel like it's coming from down in her chest, but it's not like a tickle either. I told her to tell the doctor, but I don't know if she will. I'm hoping it's nothing rather than something, obviously. Mom takes a lot of medicine, and dry cough is a side effect to at least one of them, maybe more. So, it could be that. But, with all this other stuff creeping up on us, it's hard not to take every ache and pain and cough seriously.

Blinkie · September 2016

Melynn44, at my mother's clinic, they had her sign a form that gives all the clinic staff permission to speak with me about my mother's situation. Have you and your mom set up something like this? (I guessing you have, but wanted to mention it just in case.)

I am not always able to be with her for appointments, but I can call and speak with the nurse about what happened. They also are willing to send me printed information.

My mother has breast cancer but it will not be treated as she is so old - almost a century!

I'm going through my second experience of breast cancer. I have signed the papers at my clinic so my husband can speak with the staff. He usually goes with me to important appointments and takes notes for me because I am sometimes so stressed out I can't remember details of what I am told. If I'm there on my own, I always make them write everything down for me.

Your mom is lucky to have you for her daughter.

melynn44 · September 2016

Blinky- Good luck to you and yours. No form like that has been signed as far as I am aware. I am sure if it has, it's my Dad who is on the form.

Her nurse liaison person called today, and it is just one stressful situation after another. So, the onco test, they don't think they'll have the results on for 2 more weeks. And, they don't want to start radiation till after then. It just feels like a lot of waiting, and not much doing. And the family vacation feels like it's going down the tubes.

Update on my Mom: Post-Surgery Confusion

Comments

Categories