Lumpectomy Lounge....let's talk!

PMR53

Midge,

So happy for You!! You can sail through RX! My path was close margins so I am still having MX in the Fall. I am not having RX.

PMR53

inkster

Yay, Midgie! Fabulous news!

PatRN10

So the seroma saga continues. Meet with RO today. he called BS because he believes it needs to be drained. Awaiting call from BS office.

PontiacPeggy

If I recall correctly, no one has actually looked at your seroma from the BS's office, right? You were just told over the phone to wait. Hopefully, you'll get looked at by the BS!

HUGS!!

april25

PatRN10 -- Hope your seroma issue is resolved. (I went through chemo, with SEs, and still am glad not to experience a seroma!) Good luck!

PMR53 -- Sorry to hear you had close margins and are scheduled for more surgery.

PontiacPeggy

PMR, HUGS!!!

PatRN10

Hi Peggy, correct. MA for BS told me that over phone. I would have been more adamant on phone but I knew RO was looking at it today so there would be a second set of eyes. Also discussed oncotype with navigator who seemed very surprised I would even ask for it. She will check with MO in the AM. If ordered now, may have results for appt. in a couple weeks.

PontiacPeggy

What's an MA, BTW? Haven't run into one of those. Of course, keeping track of the alphabet designations anymore requires an unabridged dictionary I think you are now well-armed to have something done since the RO thinks so and HE has actually SEEN you!

HUGS!

PatRN10

medical assistant

shelleym1

It seems my seroma finally absorbed after rads. I hope you get some relief soon. They are such a pain in the arse!

My itchy bumps went away really fast too. I was pretty lucky.

Midgiemoon

PMR53 I am sorry you have to go through the MX. I will be praying for you!

-Midgie

Tresjoli2

Got my FISH results today. Positive just like the IHC. I'm definitely over producing her2. I am supposed to see the geneticist and my RO tomorrow. Then today they called and insisted I see my MO tomorrow too. Feeling a little overwhelmed and I wasnt planning on all three of them so I have no one to go with me. Not sure what to expect

PatRN10

so sorry Tresjoli2 . This really is so overwhelming. Sending prayers and thoughts your way.

PontiacPeggy

Tresjoli, I'm so sorry that you don't have someone to go with you tomorrow. I had a nurse navigator who would go with me if I asked and also my sister-in-law (she was good!). That's a helluva lot of appointments in one day but at least you'll have them out of the way. And yes, it is overwhelming. Write your questions down and bring them with you. It's too hard to remember them when you're sitting there half-naked or even dressed. And take notes or record on your phone. I'll be in your pocket and dancing - look for me!

HUGS!!!

gypsyjo

Tresjoli, If you could update your profile with your location, there might even be someone near you that would volunteer to go with. If you were near Portland, I would. It might be a long shot but you might try it.

 

Italychick

Tresjolie2, my advice would be take in everything they say and go home and think about everything. I met with four MOs and definitely felt pressure to choose their specific chemo protocol right on the spot. And don't be afraid to set up follow up appointments if you come home and have other questions. Each of my chemo treatments gets billed at about $60,000 per round, so with 6 rounds that is $360,000! So of course all the MOs were eager to treat me. Also, ask them for trial data, etc. that supports their position so you can read about the effectiveness of each chemo for your specific situation. Researching on my own was a pain, and if I could look back, I would ask them for concrete data supporting their position.

I think with HER2 comes chemo. I could have done (1) adriamycin/Cytoxan followed by taxol with Herceptin, (2) Taxotere/Carboplatin/Herceptin or (3) 6-8 rounds of Taxol with Herceptin. I have read of some women on here trying to push Herceptin only, but I don't know if that ever gets approved. Supposedly Carboplatin has a synergistic effect with Herceptin. I did not get recommended Perrjeta, but I see that a lot of women also get that. Maybe because I was barely HER2 positive.

Since you have positive ER/PR receptors, you will probably have more options than I did.

How big was your lump? And do you know your margins?

Tresjoli2

i have clean margins. I had only 1.5mm of IDC in the biopsy. I had a large amount of high grade solid comedo type dcis with necrosis along with a microinvasion of 1mm in the lumpectomy. So my IDC was tiny.

sailorbev

I am 5 days post-op LX and SNB. My energy level is still only about 40-50% of what it usually is and hasn't improved much in the past 4 days. I am used to being fairly active and I am now beginning to wonder if my lack of energy is due to the surgery and anesthesia or the fact that I amspending all of my time either on the bed or the couch? Hahaha. How long did it take for you to regain some of your energy? When did you do things like go out for a walk around the block?

UpstateBee

PMR53 So sorry you have to have an MX now

Tresjolie Wish I was a bit closer, I'd come with you, I am slightly familiar with that medical area now after my visit a few weeks ago. That's a lot of appointments in one day and a lot to take in. I agree with not making any decisions till you think about all the options and what everyone says. And yes, ask for data and what not. At Dana Farber, the MO had all sorts of charts and graphs supporting his recommendation, it's nice to see it, something concrete, not just words in the air.

Settling into a routine here now, today I get to pay for my radiation copays which I found out was $50 per treatment!!! I pay once a week. Yesterday I saw the doctor, that is a once a week thing too. So far so good. Luckily we do have the Aflac cancer policy that we almost cancelled last year. Phew! Glad we kept it. That is really working out well right now, first check is in the mail after days of scurrying around trying to gather all the paperwork to submit.

kayfry

Sailorbev, my Lx was in January and rads through all of March. I tried to stay as close to my normal (fairly active) routine throughout as I could, and I think it did help a lot with keeping up my energy level. I was very lucky that, with DCIS only, I did not have to have a SNB or any nodes removed; from what everyone here says, that made things much, much easier. But anyway, I didn't really lie around on the couch at all. Even the day after surgery I was out walking with my dogs and working (I'm a writer so I can work anywhere and even in pajamas if I want, which I generally don't). I got back on my horse for a gentle ride 6 days after surgery (with my BS's permission, although the nurse navigator thought it was insane), and continued to walk and exercise. Rads made it harder, mostly just because of commuting an hour each way to treatments 5 days a week for a month, and toward the end of rads and for several weeks afterward, I did have some fatigue. I was unlucky enough to catch some kind of virus a week after rads ended, which didn't help. But I did kind of fight the fatigue, kept riding my horse with care, kept walking regularly, kept working as much as I could. I did feel tired in the evenings and went to bed earlier than I normally do many nights. About 2-3 weeks after rads I began feeling pretty much normal. So my experience is that being as active as you can, and maintaining your routines does help. Which is not to say that the ladies here who counsel plenty of rest are wrong, either, but everyone's body and mind responds differently, I guess. Being active is very important to me, so not doing so would have been more stress on me than fighting the fatigue and minimal discomfort. Try to do not just what you have to do, but also some of what you love to do, since (I think) feeding the spirit helps the body heal, too. Riding my horse was the best therapy for me, even though I wasn't as strong as I normally would have been riding.

PatRN10

Bev, I went back to work 4 days post op and for the next week after that, all I wanted to do after work was go home and take a nap. Surgery, healing and anesthesia all do a number on the body. I also noticed this after gall bladder surgery a couple years ago. Listen to your body. About 2 weeks post op , I turned the corner energy wise and just gradually felt better to do more each day. Still early for you, hang in there. Everyone is different.

sailorbev

Kayfry and PatRN10, thanks for your replies. It does look like we all do respond differently. Glad to know you turned a corner on the energy after 2 weeks, Pat. I did force myself to get off of the couch this morning and do some sewing, which is something I love. I am making a knit shirt with a separating zipper in the front that I can wear for the next week or so.

tgtg

Sailorbev--I second what kayfry says about exercise as a restorative act. Before surgery, my surgeon said to keep up my fitness program and return to it when I felt up to it (except for arm work, of course, for a while). My lx was on a Monday, and on Wednesday I was back at the gym (never took any pain meds so this was possible),, and I felt really good, since the increased circulation from lower body resistance work and the treadmill helped my swelling and discomfort go down. Staying fit while healing and right through rads really staved off fatigue for me,much to my RO's delight. If you read Marisa Weiss's book, Living Well beyond Breast Cancer , (a valuable read overall), you'll see that she recommends exercise for precisely the same reasons that my surgeon did, even if exercise means initially just some good walks until you reach your pre-op level. So I'd suggest getting off the couch and gradually getting back to your old habits, with modifications for arm movements of course.

Tresjoli2

started lupron today to start shutting down my ovaries. Go chemopause! Got genetic testing underway. Decided on the full panel. Also found out I will need 33 radiation sessions and go for my mapping in two weeks.

Having a mammo on Friday to make sure they got all the calcifications. If not RO wants BS to remove them so we miss nothing.

Chemo and or herceptin is as clear as mud. My tumor is very small (1.5mm plus some microinvasion) which would mean no chemo and no herceptin. My her2 though is very strong with a FISH ratio of 4.8. So herceptin would be warrented. But there is no evidence to support herceptin without chemo. MO not sure what to do and consulting her colleagues and is personally going to pathology to review my slides herself. I'm in the Grey zone. Stressed. I spent the whole day at the hospital..

sailorbev

Tresjoli, wow that all sounds so overwhelming. Breast cancer is this whole new language and the choices can be so difficult.I am glad your MO is consulting others.

UpstateBee

Oh YIKES Tresjolie, that's awful to be in that grey zone where even the experts are not sure. Glad she is consulting her colleagues and getting a clearer picture, but I'm sure it was a long and stressful day and without definetive answers.

{{{HUGS}}}

sailorbev

I have clean margins and negative nodes!! Yippee! I am so relieved. The surgeon said on the phone that one margin was close but not a problem. I will find out more at my post op visit.

tgtg---thank you for sharing about your experience with exercise. I went for a leisurely one mile walk this morning without any problems. I may go for another this afternoon. I will gradually work my way up to my usual 3 mile brisk walk. Thank you for the book recommendation, Living Well Beyond Breast Cancer by Marisa Weiss. I ordered it for my Kindle.

MaggieCat

Tresjoli2 - Please read this editorial if you haven't seen it already.... Maggie

How Low Should We Go? The Search for Balance in Management of Small Human Epidermal Growth Factor Receptor 2–Positive Breast Cancers

http://jco.ascopubs.org/content/32/20/2122.full?ijkey=80f568d7f9f03c25b657a3149367b27f9562db7c&keytype2=tf_ipsecsha

Concluding statement....In the meantime, we continue as always to treat our patients in an environment of imperfect information. The advent of HER2-targeted therapy has been one of excitement and opportunity for oncologists and for our patients. The favorable prognosis of small HER2-positive tumors means that the choice to receive systemic therapy in this setting is more clearly a preference-sensitive clinical decision, requiring the timeless clinical skills of communicating clearly with patients regarding small and sometimes uncertain risks and benefits, understanding patients' unique values and preferences, and facilitating shared decisions.

A link to the ASCO 6/2015 abstracts section

Prognostic impact of HER2 overexpression/amplification in women with pT1a N0 M0 breast cancer with known screening status: First results from a multicenter population-based cancer registry study.

http://meetinglibrary.asco.org/content/147388-156

Nash54

Congrats Sailorbev of the good news!!!

inkster

I'm still on the other side (lumpectomy is on Monday) and I haven't had much insight to offer, which makes me a bit of a lurker. But I've been following this thread and I gotta say you all are so fabulous. I love how much you support each other.