Introducing myself...

Hi, I'm new here. I was diagnosed on Friday with a T2N0 malignant mass, 2cm x 3cm, which from my research looks like stage IIA. We met with the surgeon but are still waiting to meet with the oncologist. We don't have ER, PR and HER2 results yet. My biopsy showed DCIS in parts and invasive disease in other parts, so I am not sure what the final diagnosis is. I assume the oncologist will tell me.

I am opting for chemo first, followed by a double mastectomy. The surgeon said it would probably be about 6 months of chemo first, and my reconstruction will happen at the same time as my mastectomy surgery, which is really nice.

I am 41 (had my mammogram, ultrasound and biopsy on my 41st birthday last week) and have 3 kids. My youngest son (11 years) is a cancer survivor, so this all seems like one giant nightmare. I am active and compete in long distance triathlons. I'm hoping I can continue to stay active through my treatment. Is there anyone else who has been able to stay relatively active during treatment? I would love to hear your stories.

Dear IronMom, I am waiting for results today at 3 but wanted to send you my best wishes and prayers.

KTF

Hi ironmom3

I just got my biopsy results back

IDC, grade 3 (est/pro her all neg) ki-67 90%

My dr called Me in he already has an appt set for me in 3 days with a surgean.

What is next? What happends first at this new appt?

Do i have to get it cut out and all checked first. If i walk in and say i want the double mastectomy and go from there, can they just check the stage/lymp nodes while they do that. Then treat me with whatever else needed.

Im 27 i have a 2 year old little boy and i am with you i wanna stay active, i wanna look healthy and okay, i wanna keep good memorys for him no matter what il have to face.

Wow you are so calm in your post. I know this is overwhelming and there is so much ahead of you. It sounds like you already are one strong mama. I think that your plan sounds solid. A few things. I think it is well worth it to get a second or a third opinion so you know you have options and that you are pursuing the best path. For reconstruction don't put off choosing a plastic surgeon and breast specialist. It is far better to interview and get information now at the beginning of the journey. You will be the strongest now and well later its hard to make some of these decisions when you are so ready to be done.

I will say my strongest recommendation is try to avoid

implant under the pec muscle reconstruction or

losing your tricep or

abdomen muscle for a breast

I am not sure how attached you are to reconstruction but I used to do triathlons ( just comunity stuff but still) and I wonder if I will ever be able to bench press more than 15 lbs again. I truly should have gone flat rather than give up my pec muscle.

Pick the best breast surgeon and VERY best Plastic surgeon you can make sure they are clear and on the same page as you.

Also if you can be put in touch with a reach for recovery mentor that is a godsend. Lean on your telemedicine nurse if you have one in your area.

feel free to pm me if you need more information or support. My kids are 9 and 11 and I have a similar story.

Thank you for the welcome and the good wishes.

JXmom2, good luck at your appointment. It's so much to take in.

ChiSandy, we have a close friend whose wife took a more passive approach with a not good outcome. So we were given my options, and I feel better seeing a response to chemo before removal, and that's why I've chosen that route. Full biopsy results will be in by the time I see the oncologist, so nothing is set in stone yet, but from the options I was given by the surgeon, that is my reasoning for this option. I don't think we have Oncotype DX here, I have never heard of it but I will ask.

Exercise Guru, I guess I'm feeling somewhat calm because I'm not so far removed from going through my son's treatment. I appreciate the advice about reconstruction, you've mentioned some things I would not have thought of. Things are different in Canada, we can ask for a second opinion but it's not really shopping around/interviewing like it is in the U.S. I will be sure to ask lots of questions and make sure my plastic surgeon is on the same page as me.

It's nice to hear that some were able to keep active. I was supposed to be riding my bike across Canada next September to raise money for childhood cancer research. While I'm guessing that won't happen now, I still want to stay fit.

IronMom3

Exerciseguru, I want to ask you, why not the implant under the pec muscle? That's where my PS is going to do it to avoid implant movement. I was performed a complete mastectomy and I have a skin fold to do the recon. I need to know. I have had three surgeries, held the final recon until finishing RT to avoid a fifth one (changing a damaged implant). My TE is under the pec muscle now; after the initial days (which were like hell) pain subdued and only feel the pressure of the TE on my chest. Since my implant will be no more than a size B, should I be alert or not go with the planned surgery?

Yes, as I said, we will have full results before anything is started. I appreciate the suggestions and will add some questions to my list, based on these responses.

The negative nodes is not based on testing. If I opt for either a lumpectomy or mastectomy first, a sentinel node biopsy will be done to check. At this point, there is nothing palpable or visible on scans.

The type of lump was not diagnosed just from seeing it, it was diagnosed from 4 core biopsy samples that were taken.

Please pay attention to what ChiSandy has written. You can wait for pathology results to get a better idea....

Furthermore, in some cases, traditional pathology results no longer guide treatment here in the US: the Oncotype Dx test does. I had grade 3, highish ki67, an lymphovascular invasion but my Oncotype was very low, meaning no chemo. I had high ER/PR sensitivity though. It isn't just about being aggressive and throwing everything but the kitchen sink at it, it is about what will work. MY Oncotype report showed I would do WORSE with chemo in terms of mortality.

(HER2 + always needs chemo...have you had that test?)

JXmom2, so sorry for what you are dealing with. Maybe a separate thread will bring you support (and maybe you already have one).

Ironmom3, granted it's your decision as to your treatment, but your friend's wife's tumour profile, personal health and medical team are not yours, and it may not be prudent to draw parallels. I would be cautious about letting the circumstances, timing and decisions regarding the unfolding of one person's experience that resulted in a poor outcome be the primary driver rather than assessing the facts in my own particular case. Neoadjuvant chemo is often given to shrink a very large tumour in order to have a less deforming cosmetic outcome with a lumpectomy. Not sure why you would elect to have chemo prior to a BMX to shrink the tumour, when you will be removing both breasts anyway. Cancer Care Ontario does cover the Oncotype DX test for ER/PR+, HER2-, node negative (N0)/node micrometastases/isolated tumour cells. So patients with 1-3 positive nodes must pay out of pocket, because at this time, CCO has not determined that there is a sufficient evidentiary base on which to recommend coverage. Since this is an out of country test, your oncologist must complete the paperwork for pre-approval by the Ministry of Health, in order for OHIP to cover the cost in full. Oncotype DX will only be done on the surgically excised tumour specimen, not the biopsy sample, since nodal status is only clinical prior to the final pathology from surgery and the SNB. Ontario was the first province in Canada to pay for the Oncotype DX and has done so since 2010. I know British Columbia covers the test under the same eligibility criteria. I doubt the territories cover it and smaller provinces may not, but I am not certain. I am in Toronto and my oncologist offered me the Oncotype DX within minutes of meeting her. Are you at a community/regional hospital or at a major cancer centre with breast cancer specialists? Personally, I would never elect to have chemo, unless there was compelling evidence that the benefits would outweigh the risks, permanent side effects and collateral damage.

BRA-Day (breast reconstruction awareness) is on Oct 19 at many cities in Ontario. Check bra-day.com for exact dates and locations. The Toronto flagship event will have close to a dozen PSs, whom you can meet and ask questions. It's a great way to figure out which PSs are a good fit for you and then you can request a referral to one or two. There is also a show and tell lounge where there will be close to 30 bare-chested women who have had various types of reconstruction. You can see firsthand what results they have had and talk to them about their experience. Smaller cities will have fewer PSs in attendance.

Many women who have had positive experiences and moved on with the lives aren't still on bco, so the postings here are skewed more toward problems, pain, mental and physical nasty sad effects and other difficulties, challenges, and complications. There are lots of warnings about recon requiring multiple surgeries and needing the wherewithal to be up to it. Not all recon needs multiple surgeries. Rads will need fat grafting. PSs will often use fat grafting to fill ripples and divots. Some of these could potentially be avoidable with greater surgical skills and abilities. Everyone is affected differently. Your recovery from surgery is generally correlated to your health and fitness. The fact that you compete in triathalons will likely mean you'll bounce back quickly from a BMX and recon. If you don't have a really low body fat % and are considering implants, pre-pectoral (above muscle) is offered by a handful of PSs. Choose your surgeons carefully. Don't underestimate the importance of an excellent BS. Some women have complications and nipple necrosis post-BMX, causing nipple loss in some instances. A skilled BS is necessary to provide healthy vascularized flaps of consistent thickness, and the lower your body fat, the thinner your skin flaps will be (and the more challenging the mastectomy). I had a single surgery with a superb outcome, despite 10% body fat. My implants are under pec, and while I don't want to trivialize or invalidate anyone else's experience, I breezed through recovery. My surgeons told me that I was the fittest recon patient that they had ever had and would learn from me what was possible. I did walking lunges around laps of the hospital on my hospital overnight, lower body yoga poses and ab exercises. I couldn't get out of there fast enough the next morning. Since you use your pecs when your arms are on the handlebars, I didn't cycle until week 4. All my restrictions came off then and I started working back to my pre-surgical abilities. I swim all strokes and butterfly took the longest to regain my performance levels. It took a lot of time and effort, but I was back lifting really heavy weights in the gym by about 6 months. I train chest once a week and have no issues. I can crank off pushups easily. My pecs mask the step-off transition at the top of my implants. I didn't have chemo or rads, but bco member KBeee remained very active throughout both of these.