Lumpectomy Lounge....let's talk!

PontiacPeggy

My MO really thought I ought to have chemo though the BS and RO didn't think so and the tumor board didn't think so but to get a definitive answer they did the Oncotype. At 13 I was in the no chemo zone.

HUGS!

HappyHammer

Chemo prior to surgery WAS due to the HER2pos part of my BC. And, yes, PP, you gals have helped me through more than just the BC...for sure! Hugs to you as well!

marijen

Yes I like the no chemo zone best! Did you see the new study that says the ER+PR+HER2- (80% of BC), doesn't benefit by chemo anyways?

It's good to know you have a low oncotype. If they ever find my primary IDC tumor maybe I'll get one.

Sloan15

marijen - macro v macro is that micro is smaller. I had clear nodes, but chemo anyway. It's crazy.

614

Dear Brightsocks:

Do you have both IDC and Invasive Tubular Carcinoma or just Invasive Tubular Carcinoma?

Invasive Tubular Carcinoma is very slow growing and it is "best" type of invasive bc to be diagnosed with.  IDC is more aggressive.  However, Invasive Tubular Carcinoma falls under the category of IDC and that is why I asked the question to you.  My oncologist told me that the tx for Invasive Tubular Carcinoma is usually to remove the tumor and that is it.  She said that radiation and chemotherapy is not usually necessary for Tubular Carcinoma.  (Of course, nothing is ever normal with bc so your tx may be different.) 

For IDC, it is standard procedure to have radiation after having a lumpectomy.  Whether or not you would need chemotherapy would depend on the size of the tumor, lymph node involvement, the ER/PR/HER2 status, and other risk factors.  Because you said that you are ER+/PR+, you would be given either tamoxifen or an aromatase inhibitor depending on whether or not you are menopausal. 

Yes, the pathology can be different from a lumpectomy and from a biopsy.  It can change. This is because a biopsy will only remove a small portion of the tumor while a lumpectomy removes the entire tumor.  The lumpectomy pathology report is much more accurate.  My pathology changed.  My ILC and LCIS were found via biopsy, in one of my tumors.  The second tumor which was palpable was not originally biopsied because it did not look suspicious on my mammo and sono.  (This lump had previously been biopsied a few years prior.)  After my MRI, it was recommended that the palpable lump be biopsied as well.  I had the biopsy of the palpable lump and it came back benign for a second time, however the name of the benign finding changed.  I requested that both lumps be removed.  After surgery, it was discovered that the "benign" lump was malignant with Invasive Tubular Carcinoma and pleomorphic LCIS, as well as many atypias which increase bc risk but are benign.  It was also discovered that my ILC and LCIS in the first lump were pleomorphic.

My doctor asked me whether I wanted to have the oncotype test.  I said, "yes".  That was all that I had to do to be tested. I was able to have a whole panel of genetic testing performed because I had 3 risk factors so I was a prime candidate for genetic testing.  If you are not considered high risk then your insurance company may not approve genetic testing for BRCA 1 & 2 and many other gene mutations.

You are asking excellent questions.  Good luck with your surgery.

Dear Rina:

I am sorry to hear about your loss of your M.I.L.

Dear Lego and PontiacPeggy:

Your time frames are the same as mine.

I am still numb under my arm from my SNB and most of my breast is still numb.  However, I can feel my nipples so that is really what is important.  I had an MRI guided biopsy 7 months after my radiation and I developed a giant 8cm hematoma.  Thankfully, it is gone now. Yay.  I had a core needle biopsy last month and I developed a tiny hematoma.  My breast feels "thick" and lumpy.  The "thick" feeling is a side effect from radiation according to my RO.  The lumpiness is just "me".  I have "busy breasts" that are extremely dense. At least my RO corroborated the numerous lumps that I feel in both breasts (that don't show up on imaging) as well as the "thickness".  He told me that this is my new "normal".  I didn't ask about the numbness.

To everyone who is about to have surgery/radiation/chemo:

Good luck and sorry that I did not address you by name.

To everyone else:

Good luck.

 

Sloan15

Brightsocks - Neoadjuvant chemo (before surgery) is becoming popular so docs can see if a cancer responds to a regiment of chemo drugs or to shrink a tumor before surgery. So, yes, there are different reasons to do it before surgery. You have a surgeon. Do you have a Medical Oncogist (MO) yet? That is the person who usually makes the call for surgery or chemo first. I didn't have an MO until after my surgery. I read that in a few years they predict that ER+/PR+ tumors less than 1cm may even be treated without surgery. It's amazing how many advances there are. Don't let that stress you out about your surgery. Right now the science supports getting the cancer out, chemo and or radiating the area, and then taking the meds foe ER/PR +. The science is on your side.

My best lumpectomy advice: keep the wrap tight and wear a tight bra to keep swelling down and wear a soft t-shirt under the bra/wrap for softness. Yep, keep it tight. We're here to help you through this!

mapagail

Sloan15, I agree, best advice is keeping it tight. At first I wore a front closing sports bra. The last area to close was getting irritated by the bra, so I got a lower cut, slightly padded bra for 12.00, with no underwire and what I call my bullet hole is finally about to close 6 weeks post surgery. I had DCIS, but MO is recommending rads and tamoxifan because my sister had DCIS, nothing else and recurrence in same breast, 9 months after lumpectomy.

LovesToFly

hi everyone, I just found the topic. Glad I did, most of the BC communities I have found the ladies all had mastectomies, although there are some ways I can relate, others I can't.

I had my lumpectomy and SNB The 27th. I healed pretty well, except it took an entire week for me to stop feeling foggy from the anesthesia. The underarm can get quite achy, and yes anything that rubs was a problem for a few weeks. The breast healed quite easily and never really hurt much, however it looks quite lumpy and unattractive these days!

There was a 2.5mm spot in one lymph node, so chemo is next. Starting January 6. Fec-d regimine. I'm starting to get very scared of going through this, and the side effects. I should stop reading about them because a lot of them something awful! I'm hoping to work part time through my treatment.

I never did or heard of oncotype testing. I will ask my MO about it

PontiacPeggy

LoveToFly, Welcome! We're glad you found us, too (and sorry you had to). Hopefully you've figured out that we are a warm, caring, supportive and somewhat wacky group. The underarm site will probably remain annoying for quite sometime. Not necessarily hurting but easily irritated - just be prepared and if it quits bothering soon, do a happy dance! The nerves may take up to a year to heal and they may not ever return to normal - everyone is different. The MO probably didn't bother with an Oncotype test since you were node positive and there wasn't much doubt that you'd need chemo. It is most often done when there isn't a clear-cut answer on whether chemo is needed.

I didn't have chemo so I can't speak to it. However, I will tell you what I tell ladies starting out on Arimidex: What you read are often people who do have awful SEs and need help in coping with them. But not everyone has every side effect. Some you are almost guaranteed to have (e.g. hair loss ). So don't anticipate you'll have a boatload of SEs. If you do have SEs then the chemo boards here will be the place to go to see how to cope with them. Chemo IS scary. My daughter-in-law had colon cancer that required chemo. She had the most positive attitude of anyone I've ever known and every chemo session she would "tell" the chemo to KILL CANCER. That helped her get through it. And she's NED. I would guess another thing to remember is that the MO's team are there to help you get through chemo as SE-free as possible. Tell them if you are having a problem; they probably have a solution for you.

Keep asking questions and I'm sure you'll get answers. The more information you provide us, the better we can answer you. BTW, where do you live and how old are you? (hometown can be entered in your profile and made public; age can be put in your signature and made public).

HUGS!!

LovesToFly

thank you, I will update my signature! In the meantime I can tell you that I turn 42 a month ago, and I'm from a suburb of Toronto!

I've actually been through this with a few people close to me, my father had colon cancer two years ago and a client of mine ( i'm a social worker with kids in foster care, so client is a little more intimate than it sounds) had bone cancer, obviously the diagnosis and treatment were different, but they did both go through chemotherapy and although they both had some side effects, neither of them were horrible! I do feel like my oncologist and the team really want to be on top of side effects, so hopefully they will help me. My biggest concern is immune system, because I have two school-age children, and because I am very prone to strep throat. I will be getting the shot after every infusion, so hopefully that will help.

I am also, obviously, quite heartbroken that I will be losing my hair. I've worked hard to get my hair the way I like it, and it's really sad. I've already cut it twice, it's ear length now ( was below my shoulders a few weeks ago), and I'm getting buzzed the day before I start chemo. I cannot stand the thought of it starting to fall out.

I assume chemo is a given for me, since there was a lymph node involvement, and it was above 2 mm. I know 2 mm is the threshold for micro vs is not so micro.

Sloan15

HappyHammer and Lovestofly- In my post on micro v macro, I should have changed my other post to say mets to the nodes. It's really up to the doc and the pathology of the cancer as to whether you have chemo or not. I just don't want either of you questioning if you should have had chemo or not. We question the heck out of ourselves when we have cancer! I just want to reiterate about the article I read that said someday they won't even do surgery or chemo if they can treat it with the meds. That would be awesome, but think how that first group of women will question themselves. When our docs made their decisions, they took all the info they have about specific tumors into consideration.

HappyHammer

Sloan- thanks for clarifying...with all of the targeted therapies I really think things will change with chemo as well as surgery recommendations. Being Er/HER2 pos, while I am very glad to have it behind me- am glad to know we put everything we could to that cancer before surgery and I was one of the lucky ones that had a very good response. Still think every day about recurrence but am trying not to live life in fear. It makes such a difference to be part of this group, though!

LovesToFly

no worries, I know that with a 2.5 mm spot in one lymph node, it is definitely in my best interest to do chemotherapy! If the spot was smaller than 2 mm, or there was no lymph node involvement, I would question more.

Eta: but really with any lymph node involvement no matter how small I think I'd want chemo.

LovesToFly

I notice a lot of you have the Sentinel lymph node removal and your signatures, did you add that in? Because when I looked for it in the surgery, I didn't find it (although I guess the 1/2 nodes makes it obvious)

Jclc83

All the new therapies for " breast" cancer are very promising indeed. The current train of thought is not the location ( breast) of the cancer but the type. HER 2neu cancer is thought to be a different cancer entirely from ER/PR cancer and so on. Each different from another and the treatment will be unique instead of treating all "breast" cancers similar. I read somewhere that instead of throwing a blanket over the whole forest, each tree is targeted independently. Using bacteria/viral infections, immunotherapy and other new treatments. No more slash, burn and poison or at least not as much.

With all that being said, THEY say treatments like that are at least 5-10 years out. For those of us affected now, chemo and radiation are the most successful against these cancers. DCIS can change behavior and become IDC, microscopic cancer cells travel through our body before we have a palpable tumor. We can't wait 5 to 10 years but we can extend our lives by at least that much and maybe profit from the new research in the future.

This is my opinion: There is no point in having an Oncotype test if you have any positive nodes Right now, at this moment,with all its side effects, I would have chemotherapy even if I had one positive node . Ask me in ten years and I might change my mind

PontiacPeggy

LovesToFly, you've got it perfect! Your signature generally covers stuff we can't enter in our treatment or other sections. Maybe a favorite saying that has helped us or more profile info like you did with your age. And yes, 1/2 nodes says it all

HUGS!

marijen

Hi Sloan, Thanks for answering. I knew macro was larger than micro. I was wondering if they were treated differently and if it would affect survival rate. I don't see anyone talking about macro mets

Brightsocks

619 I went back and read my report over and both terms were listed. At the time of our first meeting I should have been more prepared to ask more questions.

Tresjoli2

happy hammer you may also want to join us on the triple positive thread

Annie88

Hello ladies! It has been awhile since I have posted here. Last December I had my LX and completed rads las Feb., last month I had a total hysterectomy and now I am having shoulder and neck pain. There have been some discomfort in the LX breast. I am just wondering if this is nerves or changes from rads or hormone changes. Tomorrow I will go to the dr for labs. It of course has me concerned. Any insight is greatly appreciated

Sloan15

Marijen - Yeah, sorry, I should have added your name to that last post. I didn't want my wording to freak anyone out about micromets v macromets and chemo, and I'm glad you (and me and others) are starting to ask our docs lots of questions, and we understand that all breast cancers are not the same! We hear THAT WORD, and when we are first diagnosed, we don't realize that cancer pathologies are different (and that there are so many treatments available now!)

marijen

Sloan, I see BS tomorrow re: last re incision and I'll try to slip that question (micro vs macro) in, we'll see. IDC for anyone interested, there are four different kinds. I don't know what mine is because my primary tumor is MIA. Never found.

Sloan15

Marijen - That's interesting. Did the scans show any mass or did they just discover IDC macromets in the nodes? If your body was fighting it off inside you, that's pretty awesome.

Brightsocks

Does anyone have some advice for the first few days home after lumpectomy and sleeping. Or any other tips that helped your healing process.

PontiacPeggy

Brightsocks, You may want to have front close shirts/tops and bras (no underwire) until it is comfortable to raise your arm and your Lx incision isn't tender. Ice. Have plenty on hand and follow your BS' instructions. If they give you a prescription for pain pills, fill it. Don't try to tough out any pain. Nip it right away. If Tylenol is all you need, take it. I didn't need pain pills but took Tylenol at night just in case. Don't do much of anything. Let everyone wait on you. Take as much time off from work as you can so your body can heal. This is NOT minor surgery, even if it is outpatient. It is major and your body needs for you to rest so it can heal. Those are what come to mind right now. I'm sure other ladies will chime in.

HUGS!!

marijen

Sloan, that's a tough question. I had the works, Mammogram, Ultrasound, MRI, CT Scan and Pet Scan, nothing found a tumor in my breast. My DCIS is only that, grade 2. (no invasive component). My pathology report only says macromets in one node. My BS thinks an IDC tumor in my breast was so small the Letrozole knocked it out. Or it's still there and we may never find it. Although I know with three surgeries he looked for it. Maybe I'll get news tomorrow, but something tells me no. My DCIS is the ER PR positive/HER2 negative. That's what they are going on and the Letrozole worked enough to shrink the node from 4.1 cm to 2.1 cm. However measurements I found out depend on the plane they are taken from. After axillary dissection the node measured .3 cm! The DCIS measured .5cm I think. DCIS started at 1.8cm. down to 9mm before surgery after six month US. So for anyone reading this is called cancer of unknown primary (CUP). You can look it up. Also known as Primary Tumor Unknown.

614

Dear Leger:

Sorry that I botched your name.

Dear BrightSocks:

How would you have known what to ask???  You are doing a phenomenal job researching and I wish you the best of luck.

Dear LovesToFly:

I don't remember how I found the Sentinal Lymph Node Surgery in the signature column but I think that it was listed under types of surgeries.  Good luck finding it.  However, the fact that you list that lymph nodes were removed implies/states that you had the surgery.  I wish you the best of luck.

I did not have chemo so I do not really know what I am talking about.  However, I have heard that icing one's hands and feet during the entire chemo infusion every time that chemo is being given helps to ward off neuropathy.

Dear Marjen:

That is terrifying!  I don't even know what to say.

Dear Annie:

I have some discomfort and numbness in my LX breast too.  I had my surgery 1 year and 5 months ago and I completed my radiation 1 year and 2 months ago. 

Dear Jclc:

Interesting.

Dear Sloan and PontiacPeggy:

You have so much informative information.

Dear HappyHammer:

I worry about recurrences too.  My fear is due to the fact that lobular carcinoma is so difficult to detect.  I was also dx with two primary bc's plus LCIS, and pleomorphic ILC/LCIS is more aggressive than non-pleomorphic.  My RO told me that my breasts are among the most dense that he has ever seen (at M.D. Anderson Cancer Center!!) so I know that imaging may not detect much for me.  I have also had biopsies at each 6 month testing time since finishing radiation 1 year and 2 months ago.  ALH was found last month.  ALH is benign and the Arimidex/Anastrazole should prevent the ALH from becoming malignant, so I am happy about that.  I try to put it out of my mind as best as I can.  All of you are such a help to me.

Annie88

614- I am glad to know that this may not be out of the ordinary for post LX. It is my new normal, I guess.

Brightsocks- I would have shirts that button down in the front, whether it be pjs or shirts. Rest and do as little as possible. Let family and friends make meals and clean, as it is not worth doing if it disrupts your healing. Best of luck on your surgery.

HappyHammer

614- Yo are so great to respond to each person by name....just lovely! I am worried about recurrence- calling Surgeon tomorrow to look at swollen node under Rt arm- hoping it's swollen from staph infection- want her to culture several places on my abdomen..getting nervous about the staph/MRSA because just found a large place under my radiated breast and at top of breast with some red bumps...hoping not staph thinking it's skin breaking down from radiation...at 14 of 30 sessions...just do not want the staph/MRSA to get into the radiated breast area. UGH! There may not b e enough Ativan in the world to quell my fears as this al progresses....plus some of the people getting rads when I do cry and all and sooooo, am taking headphones tomorrow. I feel for them and pray for them daily but cannot get attached to them or hear them- it just makes me crazy anxious....for them and me. I am a professional counselor and this is weighing heavily on me but my sister coached me al weekend about this...so am going tomorrow as Warrior Woman- headphones in hand. Wish me well as I hate to not even make eye contact with the precious souls there but I just cant do it right now.

PontiacPeggy

HappyHammer, YOU are your most important priority now and YOU must do what is right for you. Don't worry about anyone else. Are the red bumps on your breast little teeny tiny ones, like pin pricks? If so they could be punctation (notice there is no "u") - where the hair follicles get irritated by the radiation. I hadn't even noticed mine until the RO pointed it out. He told me it was time to slather on the Aquaphor (which I hadn't been doing). This was about day 17, if I recall correctly (of 33). I hope that's all it is for you. Sounds like you are keeping on top of things to make sure the staph infection stays under control. Wishing you the best. Take care!

HUGS!