TRIPLE POSITIVE GROUP
Comments
-
Regarding the MX vs. LX decision making process question.
I chose bilateral mx for a couple of reasons.
- I had an LX before chemo and did not get clear margins, so I needed to have either another LX or MX after chemo.
- If I chose MX, I could avoid rads.
- I did BMX for symmetry and to hopefully avoid future "new" cancers and the anxiety of mammo's.
That's what I chose, but I'm also older with saggy breasts so I really don't miss my original parts. I can understand wanting to keep your breasts, especially if you are happy with their appearance.
I did DIEP recon. I'm very happy with the results, but I can honestly say the procedure would probably not suit everyone. I had lots of sick time at work and no little children to look after. My husband took care of the house so I could just recover. Cost wise, everything was covered by insurance. I'm not an overly physical person, but if I was more athletic, I'd probably be unhappy with the loss of some muscle strength. Also, I'm over a year out from surgery and my tummy area is still really numb, I was expecting a lose of sensation in the breasts, but didn't really think about the tummy. While things still seem to be improving, I miss my husband's touch on my tummy.
Its a hard choice and everyone has there own reasons for going one way or another. Good luck to those in the process.
0 -
Hi Sammy3 & Furiso,
For me, I choose a single nipple sparring mastectomy instead of lumpectomy because of the following reasons: I was small breasted and a lumpectomy would be very noticeable; with a lumpectomy, I would have needed to do radiation (likely 5 days per week for 4-8 weeks for me, and I live 90 minutes away and am trying to continue working);
I chose single vs double as I tested negative for all the genetic testing including BRCA 1 & 2 and 22 others and I liked the idea of keeping the sensation in my other breast.
I was able to have reconstruction done during the same surgery as the mastectomy. I was up walking around and using the bathroom on my own within a few hours. No lifting over 5 pounds for 2 weeks then no lifting over 10 pounds until after the 4th week. Limited cooking/cleaning ability for a month (kind of nice!) I did need some help at home the first several days, mostly because of being so sleepy from the pain medication. I found it more comfortable to sleep on our reclining sofa for the first several weeks. If I had a desk job, my plastic surgeon would have released me to work after 2 weeks, but due to the physical nature of my job, I wasn't back to full duty until 6 weeks post op.
Ultimately, make the decision that feels right / best for you. I remember agonizing over all the decisions, but after they were made, I had a huge sense of relief. It keeps amazing me how many decisions there are to make in treating breast cancer. It feels good to have a plan and be moving forward in beating cancer.
0 -
regarding MX VS Lump there is a very good post here by Beesie:
https://community.breastcancer.org/forum/96/topics...
0 -
I chose DMX after an MRI that was done after biopsy showed another area with same characteristics as biopsy site and the other breast showed a node that would need a MRI in 6 months. I felt that since I didn't know there was an actual lump until biopsy (I was told mictocalcifications) that I didn't want something else to not be seen and additional surgeries. I am happy with my decision and the outcome of surgery, but you may want to look at pictures of reconstruction on Vinnie Myers website. He does the final step of nipple tattooing.
0 -
thank you everyone for your input - it means a lot to me and is very helpful. Edited to say that I am leaning towards bmx for sure. I had atypia in 2011. then idc this year (other breast). I am not sure I can keep doing this to myself. I would love to know if I am a candidate for doing reconstruction at the same time as the surgery - seems like less anxiety. I will add it to my list of questions.
0 -
Does anyone know about the stats for reoccurance from HER2+. They say the risk decreases after I believe it is 3 yrs. Does that mean 3 yrs after initial surgery, 3 yrs after starting herceptin / perjeta, 3 yrs after finishing all treatment, after a clear pet scan, mamo or some other event? Love, Jean
0 -
Welcome Gracen. I had to have my Taxotere and Carboplatin doses lowered after I ended up in the hospital in kidney failure. I still had diarrhea on day 5 -10 for the rest of my tx. I had to go in or extra fluids a couple of times. Also ounk SES were easier if i had a mall bag f fluid after the infusion unless they used a big bag of saline for treatment day. Sounds like your doctor is watching you carefully. PS. Aquaphor is really good for a sore ahole! LOL
Much love
0 -
zjrosenthal yes your risk starts to decrease at 3 years and continues to decrease but never zero. If you are HER2+ and hormone negative you sharply decrease after 3 years and after 5 years you are almost zero.
But for the actual stats you need to talk to your MO. S/he can give you YOUR stats bases on your diagnosis, age, treatment and health history. We both my be stage IIB but we got different treatments and may be different ages. Younger you are the higher risk you are for recurrence
0 -
Luminal B and A is able to recur even 15 years after diagnosis, but Luminal B shows a peak of recurence about 4 years from first diagnosis. So, slight majority (but unfortuantely not all) of relapses occur within 5 years, in opposite to the most indolent Luminal A tumors (many incidences of relapse occur after 7 or 8 years).
0 -
Thanks Gohan 1983:) Are you a doctor?
0 -
Almost all members of my immediate family are doctors (grandma, grandpa, aunt and uncle) I don't but I want to be
0 -
I am getting very emotional. Today my chemo doc said I have a 20% chance of reoccurance. Do you count time from when you finish all treatment? Scary stuff. Love, Jean
0 -
Well, it looks like I will be joining this group after all. My pathology report on my latest MRI-guided biopsy was sent to another lab and that lab is reporting me at higher ER/PR numbers than was previously reported and that I am borderline HER2+ with a score of of 2+. It is now being sent for FISH. I don't think this changes my diagnosis in the short-term but may mean that Herceptin will be added to my AC + T infusion schedule.
0 -
zjrosenthal I'm right there with you - I'm actually more scared of recurrence than the cancer I have NOW and the treatment I haven't even yet received. I'm sorry you are scared. It's not fair. My hope is that if (BIG IF) recurrence does happen (say 5, 10 years?) that the drugs and treatments will be that much better than they are now. I pray for strength, and comfort, and that some day I can stop thinking about cancer day and night. <hugs>
0 -
Fighter girl. I am going to do the best I can with prayer and God's help not to obsess, take one day at a time and just live my life. Love, Jean
0 -
It's unusual when Mucinous Breast Cancer shows Luminal B (HER-2 positive) phenotype. Colloid Breast Carcinomas tend to be Luminal A-like (in fact, it's not exactly the same profile as typical Luminal A IDC or Invasive Cribriform and Tubular BC). But, I think your histologic subtype is a "good cancer"
0 -
Gohan1983 - thanks for the vote of confidence - it is IDC with "mucinous features," so not entirely mucinous. But from what I've read this type also rarely spreads to lymph nodes, nor does it spread quickly, and that hasn't been the case either. I also didn't get clear margins during lumpectomy, so need more surgery. I'm more than ready to talk to the oncologists about it (tomorrow and next for second opinion.) Thanks!
0 -
I'm sorry. I've thought about pure mucinous carcinoma, not mixed. Mucinous carcinoma sometims may be admixed with ductal or micropapillary component, then it may exhibits Luminal B-like or even HER-2 enriched profile. But I've found an oddity recently. One lady in our forum has pure mucinous carcinoma with HER-2 enriched profile, which it's extremely rare...
0 -
zjrosenthal that means you have an 80% of no recurrence. We are not much different. I have a 16% chance of recurrence in the next 10 years from diagnosis. I'm already 5+ years so I know it's lower now. Take it one day at a time. Don't assume you will recur. 80% is good. I know if I didn't do treatment other than surgery my recurrence rate was something like 60%! Glad I did treatment
Fighter girl see what I wrote to zjrosenthal above
0 -
No worries Gohan1983 - I have a mixed situation of IDC, DCIS and IDC with mucinous features. During the initial biopsy (before lumpectomy) the surgeon thought it was a lot more mucinous, and also talked about the rarity of it having a HER2 profile (and how unusual it is at my age, I'm 44.) Anyway, hoping that the mucinous features offer some advantage, but it seems a lot more aggressive than one purely mucinous in nature. Scanning the path report there are cribriform features as well - something else to ask tomorrow. I'm just ready to get out of this cancer purgatory and do something, I've had enough waiting around these last two weeks!
And thank you lago!
0 -
Fightergirl, I also have mixed mucinous (70% mucinous and 30% regular old IDC) with some DCIS with cribiform features. When they first thought it was pure mucinous, I was going to do surgery and radiation alone. But then when my lymph node tested positive with mixed mucinous and a second biopsy of the lump confirmed it, my BS recommended chemo, surgery, and then radiation. I was told it requires a more aggressive treatment but is still treatable.
Zjrosenthal, as Lago says you have an 80% chance of no recurrence. Pretty darn good if you ask me.
0 -
Did anyone here get a MammaPrint? My HER2 came back equivocal on both the IHC and the FISH. My doctor said he may rerun the test after surgery using a larger sample, but that we can probably just rely on the MammaPrint to determine treatment plan. This looks to be the newer generation test to replace Oncotype, hope my insurance will cover it.
0 -
Virginia - I had a Mammaprint on my biopsy sample five years ago - my BS is partnered in a study with Agendia. The test looks at a larger number of genes than Oncotype does - but it is not used as often. It is available for non ER+ patients and Her2+ patients, which makes it a useful test, but seems to be an apples/oranges comparison to Oncotype - which test is used seems somewhat dependent on physician preference, receptor/Her2 status, etc. It is sometimes used when an intermediate result occurs with Oncotype as a tiebreaker of sorts for determination of chemo benefit. I believe that Agendia will contact you if your insurance will not cover it (mine did not, but that was a while ago), they have some programs to help out. Also, if your insurance does not cover all of the test I believe Agendia will accept whatever they will pay if you ask them for an Assignment of Benefits form, fill it out, and fax it back.
0 -
Opt4Life yeah the mucinous diagnosis is why I originally opted for lumpectomy / chemo / radiation, but lumpectomy revealed a lot more info. I'll likely start chemo in the next weeks and need revisit the surgery decision. Then likely radiation and endocrine therapy. Thanks for responding - I thought I was one of the unusual ones.
0 -
Virginia123
I had IHC , FISH and Mammaprint 4 years ago. The Mammaprint was done additionally( as well as for confirmation) because I was/am enrolled in Agendia's ( Mammaprint parent co) NBRST clinical trial.
It was not covered by my insurance company but I was notified that all costs were absorbed by Agendia.
The trial is in the last year of a 5 year course. Curious if they've learned anything valuable
0 -
hi all, I went with bmx because I was afraid of reoccurrence, but we know that is not always correct. I am close to 65, have had my children and these puppies were larger than life. So bye bye. No reconstruction, I can be any size I want if I choose to dress up! On that note, I am still having issues with a seroma that won't quit. It's been drained 5 x's and the last one mostly bloody keeps returning. So do not have drains taken out too soon, even though they can't give me a reason it keeps filling other than I am doing too much with that arm. And it's not the cancer side. It was an easy decision for me.
One other note, there are 2 jersey girls on here, so as not to confuse us, I will go by Maryann . I was reading posts and couldn't figure out why that answer was given???
0 -
Ugh, about the seroma, Maryann. I had a nasty seroma after my lumpectomy, but only needed to drain it once. Hope it resolves itself soon!
0 -
It means that the tracer FDG they use for PET scans (fluorodeoxyglucose) is found in a lymph node. From what I've read this can happen in any cell that is irritated. It means that the cell is using a bit more glucose than normal. That's why doctors are needed to differentiate between tumors sucking up the glucose and other reasons the cell is taking up more sugar. Since our Dr said no cancer he must have his reason to know it is not tumor motivated.
I hope that helps.
0 -
HI ladies,
I'm looking for some input. I just finished my last round of TCHP. My cancer was found in a single lymph node and no primary site was ever found (despite PET and MRI scans). So I have an unidentified primary. I also tested positive for the BRIP1 gene variant, which they know very little about, but I do have family history so there's got to be something genetic going on.
They set a surgery date for me for January 28th. I still need to talk to the BS and PS about what they are recommending. Here's what they are telling me they want to do. I am electing to do bilateral mastectomies, I need an axillary dissection and at the end of it all I want to be a C cup (I'm currently a DDD).
They are recommending that I need 3 surgeries to start:
Jan 28 - axillary dissection and a reduction surgery. Then 12 weeks later (April) they will do the bilateral mastectomies with TE. Then 12 weeks later (July) they will put in the implants. Then I will have radiation in October - which seems like a LONG time away. The PA in my oncologist's office didn't think it was such a good idea to wait that long to do radiation. This whole process doesn't count putting new nipples on or that final stuff.
One problem with this process for me is that I work full time and have a toddler. I don't understand why this needs to be broken into 3 surgeries. Why can't we combine surgery 1 and 2 to cut down on the time I'm off my feet?
What do you all think?
0 -
wondering if some of you lovely ladies have experienced side effects from herceptin only treatment beyond the first dose. I have had no issues until this week. It started with being really itchy, everywhere. I assumed dry skin. Then a migraine kicked in which I have now had for three days and can't kick, coupled with nausea. Now I have a low grade fever but no cold and chills chills chills...what gives? I looked it up and they are all possible side effects, but have never happened before. :-(
0
