TRIPLE POSITIVE GROUP

Emily,

By the time I finished chemo, my 5 cm.+ lump was gone. So, I chose a lumpectomy. I didn't really want to go flat, and I didn't want to have reconstruction, which can involve multiple surgeries. I work full-time, and have twins with autism. I felt I couldn't be debilitated for weeks at a time.

I'm happy with my lumpectomy outcome. My right breast is a little smaller than my left one, and there is a scar on my right breast. But, I've retained sensation in my breasts, and my cleavage looks fine.

I'm not really afraid of mastectomy; if I have a local recurrence, I'll be happy to go that route. But, once your own breasts are gone, they are gone. I figured I'd keep mine as I long as I can.

I think I got it but, it's not showing yet?  I saved it.... hmmm?

kae - there are several Prolia threads, I will link below. I was osteopenic prior to breast cancer diagnosis due to a total hyst/ooph at 45 and also fitting the physical profile - Caucasian, petite. Chemo and the first six months of Femara drove my osteopenia to the brink of osteoporosis so my MO started me on Prolia - this was Feb of 2012, and I have received an injection every six months since then. My MO has stated that as long as I am on an AI I will get Prolia. I have had zero side effects and the drug has reversed me back to normal density. This reduces my fracture risk, both Prolia and bisphosphanate drugs (Fosamax, Boniva, Actonel, and IV Reclast) also offer another benefit - strengthening bone density makes your bones a less hospitable environment for bone metastasis to set up shop.

https://community.breastcancer.org/forum/120/topics/857839?page=1#post_5023554

https://community.breastcancer.org/forum/78/topics/827380?page=1

https://community.breastcancer.org/forum/78/topics/856779?page=1#post_5002870

https://community.breastcancer.org/forum/120/topics/842125?page=1

yes, good to know about this. I am petite and my maternal grandmother had osteoporosis. My mum is in line for a hip replacement. I'm concerned about my bone density over time. My first bone density scan was normal, but I will ask to keep on top of it. I also plan on adding in some substantial weight lifting this fall. Thanks for the heads up about this med..

Emily - I had to have a mastectomy because I had 2 tumors far apart and enhancements on the outer quadrant. I asked about lumpectomy because my tumors were not visible on MRI after neoadjuvant but my BS didn't want even 1 cell left behind to get into the lymph system (enhancements were close to lymph). That pretty much sealed the deal for me. If your surgeon is recommending lumpectomy I would go that route but in the end it's such a personal choice that you have to be completely comfortable with. My BS said about 50% of her patients choose double mastectomy because they are worried about recurrence. I chose to remove only one breast because she said removing the healthy breast didn't improve survival but did pose more risk during surgery and recovery. Ask lots of questions and read some of the surgery boards here; that really helped ease some of my concerns.

Good luck and take care

Hi Special , I didn't see your answer earlier but I will check again - the one about AI risk reduction. Thanks.

Tresjoli2, I so undestand you, I know it will not give you any consolation, but everybody in this situation feels like this. I do every day, every day, feel exactly what you are telling. I have a cognitive dissonance when I sit in the hospital waiting for the next test or appointment and people pass with their newborns. It could be me, I was pregnant 15 months ago and now I am having chemo and they will force my body into a menopause and I cannot think of my children because my youngest is to young to go through it all, how did it all happened?! Every day, every day I want someone to wake me up and tell me it was all just a nightmare. I do not know what to do to make myself feel better and stop being so afraid and sad. Antidepressives are not for me, not so far, I want to feel I still own my life just a little. People told me about mindfullness and I am tryingto be grateful for everything I had and still have but it is just so unfair. I do not have any piece of advice, I only wanted to tell you that I am in the same place and miss my life so that it hurts and I know I cannot get it back. And that you have all right to be sad and sorry and angry, and you miss your life before it and you have all right to do it Cherry

Sorry you are here Beachgirl. This is a great bunch of women that will give you help and support.

Me? I opted for skin saving mastectomies. I would look at my breasts and hate them once I got my diagnosis. I have no regrets with this decision. My Surgeon said he would cut and leave as much as possible but could never say he got all the cancers. That scared the crap out of me. Also, I could not have symmetry if I had not done the mastectomies. I wanted to feel great about my body when this was over.

I LOVE how my Plastic Surgeon has given me the breasts that I always wanted. They are soft, tight, upright. All I am waiting on are my 3D nipples. I do miss my nipples A LOT! But my cancers were too close to keep them. My shirts fit better than ever. I was big (38G). I would walk into a room and my boobs went in first. Now "I" walk in the room and people see me and not my boobs. I measure out 32DDD today. My implants are silicone 600cc each, 6.1" moderate not high projection. Go to Whippetmom's forum at BCO for the BEST advice on implants if you go that route.

Don't get mt wrong as happy as I am today, I cried for months about amputating my breasts. It was a hard decision but one that got my cancers out of me. I still cry from time to time over having cancer and that is normal. I never thought it would happen to me.

I still have breast sensation which is something you must discuss fully with your Surgeon and Plastic Surgeon. I know I am fortunate.

I think Oncologists think they "run" the cancer patient's life. My Primary Care is the "hub" of my care. The others (GYN, Surgeon, Plastic Surgeon, Oncologist, Physical Therapist, Counselor) are the spokes. My husband and I consulted with all of them before anything happened and got their input.

Before my mastectomies, I went to physical therapy (PT) to build my upper body. Only my Primary Care was on our side with this decison. After the mastectomies I went back to PT. I had lost a good deal of strength while recovering. Going to PT upfront was a great decision.

My Oncologist "suggested" that he would do chemo and then I could have my surgeries. We said no. Surgeries first (mastectomies with immediate tissue expanders) and then chemo. Once I was just on Herceptin, I had reconstruction and a robotic hysterectomy. Again, my Oncologist suggested waiting but I said no. I scheduled these during a Federal Holiday weeks (only 4 work days) so I could still schedule work if I wanted.

Here is my point, long after these medical people are out of your life you will have your body and health. They will be gone. You will be the one dealing with the decisions made. My husband and I wanted to be the ones in charge of all those decisions.

I also know that if I had waited, I would have felt my breasts every minute of the day looking for a change!

I did finally get the Mammaprint test which my Oncologist said would not make a difference. Well, it did. He gave me an 85% chance for no recurrence based on my diagnosis and the general population like me. My Mammaprint gave my 94.6% for no recurrence. If your insurance covers this, I would encourage you to get a genomic test as soon as possible.

In looking back, I wish I had pressed to be in a clinical trail for Perjeta. It probably would not have made a difference in my non recurrence but I wish I had studied more about "newer" treatments before I started chemo. That is my only "look back" regret.

Finally, keep wise on your mental health. About 80% of all breast cancer patients suffer PTSD. My Oncology Team has offered anti depressants time and time to me. I ask them who is qualified to make a diagnosis of depression and there response is "most everyone who has cancer has depression." I have PTSD not depression. There is a difference and it is treated differently.

They also said "everyone gains weight on chemo" and other such things. I think a woman must be informed and challenge these "everyone does this" statements. Again, it is your body. Don't let anyone treat you cafeteria style or one size fits all. Demand what you want and what you want to live with for the rest of your life. We fired my first Primary Care. She could not handle being the hub of my care.

As PatinMN shared, my husband also did gel cap therapy for me and I loss (maybe) 40% of my hair. I only loss that much because we thought "freezing" the caps meant in the freezer. We learned to use dry ice on them!

Best wishes. Someone told me that they would not wish cancer on anyone but they would not take their cancer journey back. I didn't understand what they were telling me at the time but I do now. I am a better person today and I owe it to my cancer journey. My husband told me one day that he did not know he loved me this much. I would not go back. I hope you can understand. Cancer sucks but you can take this and make it positive journey.

I hope this helps you and answers your questions.

Again, best wishes and as with all the women on this forum, I will keep you in my prayers.

Vicky

debiann

What a wonderful post. I cried joyful tears when I read your post. You really captured how to put this journey in perspective.

Thank you, again.

Vicky

Hey Coach - I'm curious about your Mammaprint. How did you get your doctor to run it and did they also do Blueprint? Did the recurrence score include information about the factors that determined the score?

I see my MO later this month but I emailed her about Mammaprint and she nixed the idea because of my being Her2 positive. What I really want is to know, for absolute sure, is my subtype so I intend to push for this at my appointment so any arm-twisting pointers you could share would be greatly appreciated.

And regarding the recurrence score - does that mean ever or within a specific time frame and was that with specific treatment or without treatment?

coachvicky, could you please explain what was the difference between those two Mammoprint tests? Are they two different versions?Cherry

From the Agendia website:

MammaPrint can help you answer the most important clinical questions for the care and management of breast cancer patients:

• Who is at risk for recurrence?
• Does MammaPrint help identify which patients may safely forego chemotherapy?
• What is the optimal treatment for each patient?

The BluePrint + MammaPrint allowed determination of a patient's potential level of responsiveness to neoadjuvant chemotherapy more accurately vs. IHC/FISH, with better correlation with long-term clinical treatment outcomes.

From BCO: The MammaPrint test looks at the activity of 70 genes and then calculates a recurrence score that is either low risk or high risk.

I was uncertain about my treatment and wanted to better know my risk, non recurrence, and if I really needed all that chemo. Once I saw that my non recurrence was 94.6% if I finished all my treatment (including Arimidex), I had the confidence that I could beat cancer and I would finish all treatment. Up to seeing that 94.6%, I really did not have confidence anything was working. I really thought I could have stopped with just the surgery. I know better now.

I didn't think the BluePrint would tell me more and, frankly, I was tired of wearing down my Oncologist. I think he did the MammaPrint so I would stop nagging him about it.

Lita19901, I sent you a PM. Mammaprint is a 5 year predictor and gives a risk factor.

Special K. My insurance was billed $4,200 for the MammaPrint. The BluePrint is an additional $3,900. Anyone can call the company and they will walk you thru what to do and the costs. One rep told me not worry about the price. He said if my insurance woudl not pay they would work with me. I asked why? The rep said because we are a compassionate company and we want you to live. No joke. He really said that.

Hope that this helps.

Vicky

If one is triple positive and does neoadjuvant TCHP and has a complete PCR, is there any benefit to obtaining a mammaprint and blue print?

Cherry,

My oncologist gave me an 85% chance for non recurrence based on my type of cancers and the general population with my cancers.

The MammaPrint studied my breast tissue and that's where the 94.6% came from. It was far more accurate than what my oncologist gave me.

Vicky

coachvicky, thank you for the explanation, when I red your post it sounded like two Mammaprint tests to me, Cherr