Lumpectomy Lounge....let's talk!

bjclaywell

Welcome MamaBexar! My surgery was one month ago, and my SN scar is still raised - although only the actual incision area is red at this point. Well, not entirely true - I have a stitch that isn't dissolving that is coming to the surface - but other than that, yes, it feels very raised, but not hot or anything. My mom is 7 or 8 years out from hers, and it just looks like a line in the skin now, so I'm hopeful mine will eventually look the same. I develop keloids rather easily, but haven't seemed to do so yet.

Nash - I didn't think about that, I guess because my mom had radiation, and gets PET scans regularly, and has since just after her surgery. Hmm. Interesting thing to think about...thanks for the heads up!! At least it makes more sense now.

I am heavily involved in Scouts as well - except Girl Scouts. I'm a Troop leader, cookie and fall product manager, Fall Product neighborhood manager, and a Service Team member. My daughter regularly participates in the Council gatherings too.

PontiacPeggy

I was a Girl Scout and earned my Curved Bar. Then since I managed to hatch only boys, DH and I were involved in Cub Scouts (PackMaster and Den Mother) and then he was Assistant Scout Master and I served on the board. Oldest son earned Eagle, youngest Life. We loved Scouting.

No change in DH. Poor dear

PontiacPeggy

SweetMamaJ, the boys (well, at 46 and 43 not boys anymore) are back to normal. We were all so stressed that night. None of us anticipated that DH would hang on like he has. No response from him since Friday. Slowly we are resuming a somewhat more normal life. The boys have to work remotely and are doing it from home rather than the hospital so that gives them a chance to decompress. I'd like to think I've been a good mommy

MamaBexar, While I'm younger than you at 70, I went through radiation. I didn't find it a problem at all. I was fatigued before I started my rads and didn't get much worse. Had slight redness (more like pink) and that was it. If it matters, I also tan rather than burn and have never had a serious sunburn. So from my experience, if your oncs agree, I'd go for it. I'm all for anything that will kill the cancer and keep it from coming back. Will you be doing Herceptin?

Thank you all again for your wonderful support!

HUGS!

Molly50

I saw MO today. Because of my low oncotype Dx he said no chemo. Not that I want chemo but I am getting a second opinion. With two positive nodes and LVI I need to be sure. I am supposed to start anastrozole right away. I am waiting on appointment with Radiation oncologist.

PontiacPeggy

Molly, I think you are right to get a second opinion. With the family history and 2 positive nodes, it is much better to have another opinion. Of course no one wants to do chemo but we sure don't want the BC to come back.

HUGS!!!

BT828

Sounds like you are moving right along, Molly. Did your MO give you a print out of your oncotype score with the graph showing how chemo would benefit you? 2nd opinions are always good and will give you confidence in your decision. You got this!

Molly50

Yes, I got the print out. I have a 10% chance of recurrence according to the oncotype, 11% with chemo so I follow the logic.

MamaBexar

My MO ordered a Mammaprint that she will discuss with me when I see her in a couple of days. She has already said no chemo because of a very, very low Ki67. I will be doing Herceptin but she told the BS not to put in a port that I wouldn't need it. I am hoping that the Mammaprint will help decide the radiation issue. I have consulted with two radiologist but I really liked what Peggy said about it not being very hard to do.

PontiacPeggy

MamaBexar, my Oncotype score (didn't do a Mammoprint) didn't enter into the equation for radiation - radiation was a given. And my understanding is that it is usually done in conjunction with lumpectomies. Perhaps your center has a different protocol. We all find it amazing at how different the approaches to BC are. Two of us with the exact same dx will often wind up having different treatments. As you probably are aware, some women do have skin problems with radiation but most of us have few or none. Glad that I was able to reassure you. Actually, the only issue I've had has been my annoying SLNB incision. It's healed. Doesn't show up easily when looking for it. But it does act up - nothing major, just an annoyance. Even sweat can make it say "I'm here!" And clothing and bras rubbing it can make it tender. Isn't that weird?

Glad you won't have to have a port put in though I gather it is quite helpful to some women.

HUGS!!

Molly50

MamaBexar, with HER2+ I am surprised chemo is not a given. Usually with lumpectomy you get rads. I am one of the ones getting rads after mastectomy unless the Radiation oncologist decides against it. I am waiting for the office to call with my appointment. I am trying to figure out when to go back to work. I feel pretty amazing except for the expander. My BS said my restrictions are eased up after this week. So I can start easing back to normal. I think the bra fitting will drive the decision. Also depends on what the PS says tomorrow.

Molly50

We got an inch of rain overnight!! Peggy, I wanted you to know that I have followed your wonderful example and am trying to be the welcoming,helpful cheerleader on other threads. Your encouraging posts have helped me so much. I am sorry life is so challenging for you. You are always in my prayers.

octogirl

Molly50; here in the Central Valley, we didn't get an inch of rain over night, but it is blessedly cool, there are real clouds in the air, and it smells like real rain is coming!!! A bit fell last night. Something to be very thankful for! Keep our firefighters in your thoughts!

Molly50

octogirl, those fires are scary and Heartbreaking. I hope you get more relief from cooler weather and real rain.

Molly50

DH and I discussed my genetic component last night and after MO told me yesterday that I should have had a BMX we decided next year I will have the right breast prophylacticly removed. I need to let PS know so he can adjust his game plan. I am going to wait a few days to start the anastrozole while my sister gets another oncologist to review my case. A few days won't hurt.

Outrunning

Talk to me ladies.
BS called.

The good news was that the papilloma was completely benign so the gal on the right is OK.

She's always at lightning speed tho: Said something about a "close margin" She's going to present to the board about it Thursday morning before I see her.

My tumor was only .4 cm

I looked up what "close margin" meant. Does this mean she might not have taken out enough health tissue around the tumor. Or that there was an area beyond the tumor that looked healthy but had some cancer cells in it. (Given that it was so small it makes sense that it was trying to grow.) So this might mean she has to go back in? I'm healing so nicely I hate to think she'll have to go in again. Although at least this time it would just be one spot not three.

Mama - happy to walk this treatment path with you. For me it has been a given since DX that I'd get rads, and because strong positive for both hormone receptors, Tamoxifen.

On a lighter note: I joke I'm bi-Scoutual. I have a Cub Scout pack and a Girl Scout Daisy troop. I'm supposed to be teleworking half days this week but have spent all time and energy yesterday and today getting ready for tonight.

Molly50

Outrunning, great news on the right! It sounds like you might need to go back in for re excision. Close margin means possible cells less than 2 mm from the edge of the tissue sample.

shuf

molly50 your son is beautiful. Shuf

PontiacPeggy

Oh, Molly, your son is so precious, beautiful.

HUGS!

Molly50

Thank you both!

Outrunning

Thanks Molly. Sigh. I was totally not at all nervous about Thursday's follow up and report on findings and now I am.

How old is you son Molly? He looks maybe just a tad older than mine.

Mustlovepoodles how are you? I keep checking in for a report.

Peggy thinking of you. FIL died a year ago today. He was so sick for so long. And in the end held on many days longer than expected. DH, SIL and teenage niece stayed with him constantly in a vigil I worried was unhealthy physically and mental for them. Glad to hear you all are taking breaks away etcetera

PontiacPeggy

OutRunning, DH has been in and out of the hospital a lot over the past 5 years and I eventually learned that I have to take breaks from being at the hospital. I come home for meals, feed the pets, and decompress. This time I am not going back to the hospital at night. DH has held on much longer than expected, too.

Again, thank you all for your great support!

HUGS!

Molly50

Outrunning, hugs. I didn't mean to worry you. Sometimes they won't go back in but will just let the rads finish off the microscopic cells. My DS is 17. Since we don't know if he will be here for 18 we gave him a big Harry Potter themed birthday party since they come of age at 17 in the Wizarding world. My oldest son did blue screen photos and added backgrounds so I chose this.

Outrunning

Molly that photo is awesome! Mine is only 9. But I guess they all look like sweet little ones when they sleep don't they?

And it isn't you that worried me. It was the close margin thing. My tumor was so small and everyone has been so positive I thought I was going to get smooth sailing in all of this treatment. Gotta remember that the BC journey is not a straight line path.

Molly50

I had a similar experience with being told small, contained tumor so LX with rads and hormone therapy easy peasy only to have two positive nodes and LVI and too much DCIS mixed in with IDC so off with the breast and nipple. That's why I am getting a second opinion. I feel like my MO is way too laid back. I have to feel confident about the decision to not do chemo.

mustlovepoodles

Molly, love the pic with your son at the train. So cute. Was that pic taken at Universal Studios? My DH is a huge HP fan, so he was very impressed too.

Peggy, I hope your day is going smoothly. I think the waiting period is so hard. I mean, no one wants to tell their loved one to hurry up & get off the stick (although, my brother did: he told my dad, "Get living or get dying." I kid you not.) But the rest of our life goes on, work to be done, bills to be paid, children and pets to attend to. I pray for you today, peace and strength in the journey.

.............................................................

I just got back from the BS. Sure enough, the seroma has refilled. I knew it had because it's been draining heavily. She put a JP drain through the lower part of the incision, leaving the upper part that is open to heal. Hopefully it will. So far there is fluid in the drain bulb and fluid draining from the open incision. She says that the drainage will decrease as the drain does its job. I hope so, because I'm changing these big bulky bandages 4 times a day (and it's so nasty!)

I feel a little better today. Normal temp for 24 hours. Well, I was feeling better before the drain insertion. I've been shaky since then, from the local anesthesia I think. DH took me to get some Indian food, which I love, and now I'm all weak and tired out. Gonna go lie down for a while. We have choir tonight and I really want to go sing.

Almost forgot to add---got the Oncotype DX back and it's a disconcerting 23. I was really hoping that it would come back low or high, but nope! right in the middle of intermediate. It also came back as ER+, PR-, which was a change from the original ER+, PR+. Not sure what all that means. At least I'm still HER2-. We'll have to see what the MO says about all this. I will not be surprised if he makes a suggestion for chemo. I had kinda decided in my mind that if it came back higher than 18 I would consider chemo, so, now we wait and see.

Molly50

mlp, I am sorry about the seroma and will pray that the drain does its job. I will be interested what your MO decides about chemo. I see the Radiation oncologist on Friday morning. I get my bone density scan on Monday. My first fill of the TE Wednesday (double fill eeek) and need to start the anastrozole soon. My sister will get back to me soon on the second op but my gut says no chemo. Best news today is my drain is out!!

mustlovepoodles

Three cheers for Molly's drain! Good job, there!

Molly, I see you have the Chek2 mutation. I also have Chek2, plus PALB2, so I'm wondering how that will factor into the decision of whether to chemo or not. This is such a weird disease. Like trying to pin jello to a bulletin board.

BT828

Ha! Good analogy mlp! Sorry things are not going as smoothly as you had hoped.

Congrats on the drain, Molly!

Question for you ladies....the mutations you mentioned? What test did those show up on? I was neg on BRCA 1 & 2 but have a huge family hx of all mine of cancer. MO talked about more genetic counseling but it hasn't happened yet.

BT828

All kinds of cancer.

mustlovepoodles

BT828, I have a very strong history of cancers on both sides of the family. Thirteen individuals, 19 cancers total. Mostly breast, lung, and colon. So, my BS sent me to a genetics counselor. The counselor said she could test either by saliva or blood. Since I'm not averse to blood draws, I did it that way.

The first set of tests included the most likely bad guys--BRCA 1 & BRCA 2--and some of their best friends. I was negative for all those. Yay! The second set tested about 19 genes, some of which correlated to breast cancer, and others which correlated to other types of cancer (thyroid, lung, colon, pancreas.) It was the 2nd set of tests that revealed two rare gene mutations, PALB2 and Chek2. Both of these confer 2-4 times higher risk of breast cancer. In my particular case, the PALB2 confers about 45% risk of BC by age 70. Well, here I am at 58, with breast cancer. Since I have one normal copy and one abnormal copy (mutation) of each of those genes, each of my children has a 50% chance of receiving a gene mutation of either one or both genes. Also, my mother and 4 siblings have a 50% possibility of having one or both gene mutations. Yeah, the gift that keeps on giving.

These gene mutations are so new that there isn't a lot known about them. In fact, had I done this testing even 2 years ago, the genetics counselor might not have had much information on them at all. Now that I'm positive for BC, we don't know what that means for future new cancers or recurrence. The one bright spot is that my kids are now eligible for testing, so perhaps they will be able to receive more intensive screening.