TRIPLE POSITIVE GROUP

Hi everyone...I am new to the site. I was just diagnosed last week with triple positive breast cancer after lumpectomy. The surgeon says that they did not get clear margins which means I have to go for another operation. Can anyone give me their experience with this? Im going for a 2nd opinion at Sloan in nyc on monday

I had a reexcision of 1 margin at Johns Hopkins. Really just like the 1st surgery there which was a piece of cake

thanks all....I am extremely stressed out with this whole thing....its been bad news after bad news....I had no idea there was even a chance of a 2nd operation. My friends told me not to search the Internet. So when I got the news I was like "what?, really?" Have any of you heard of just doing the chemo, herceprin, radiation, and NOT going back in for a second operation

Leslie, thanks so much for your reply...and happy thanksgiving

minneswede,

Nice to meet another Swede here...:) Yes I have noticed you need to push a bit. I am so glad I joined this site because it gives me some insight on my other home country, United States and what woman are going threw there and also in Canada.

I have pushed to meet the surgeon earlier than planned in order to have some time to think about the surgery that was proposed to me with immediate reconstruction. I am certainly not sure I want to go threw the silicon pouch process at this point at all. The more I think about it I rather remove my other healthy breast keeping the nipple etc just to make my chest be more even for the next few years as well as using a prosthetic ( a small one) until reconstruction seems safer and perhaps they can do it without the use of silicon at that point. I am not an expert in plastic surgery or reconstruction so feel I should be able to also meet the plastic surgeon not only the "cancer removal" surgeon but seems the hospital only booked me with the surgeon removing the cancer even if two of them are booked for my surgery on the 21 dec.

I have been so busy with other things that I have had no time concentrating on this and should of course take the time now to inform myself as much as possible in order not to just "do what they tell me" without considering options and reading more on this site what if available.

Radiation therapy is planned after surgery, every day for 2 months, it seems with a silicon pouch there can be issues that I like to avoid. Also I like to not stress this hole thing in case of mets etc. They still have not scanned my body for that since my nodes were clear, but who knows, I still want to check once the operation in done.

I am going for another mammogram on Dec 1st, since my large tumor 6,5 x 4 cm has not changed in size after all this treatment, but yet not grown, I am a bit discourage and worried that if I do have mets they will have a better chance to survive and grow due to the medication not totally working on me. Well, I am getting some different opinions from the onc and the surgeons so feeling confused about the hole thing. It seems I am just a number in statistics at this point and not sure what they are anyway. The onc keeps telling me I will know more after surgery, the surgeon told me they already know lots (see my signature)...so which is it? They do not seem overly concerned about it but I am.

Anyway, I am ranting, I have not been thinking about my decisions for a few days and need more information from different sources. Any advice given here is gold to me.

I just finished my last chemo with taxol before surgery and now I am only on herceptin every 3 weeks. My body feels beat up and my brain seems to function with lots of emotions ups and downs. I need to calm down and take some time to really think this over. I printed out the questions to ask the surgeon on this site and they were chocked I had so many questions...now I am printing out the section of questions to ask about reconstruction so I am sure they will be as surprised again...I am calling the hospital tomorrow to prepare them about the fact that I do have a lot of questions and require more time than usual to talk them threw.

Silvertopp thanks for your words..I hope the pathology report will be positive for me as well. I am also thinking a lot about nutrition, raw food, juicing and such. Nobody tells me it is important at the hospital, outside they do. I also asked I need to help to get in some kind of shape. I can´t even walk up some stairs without feeling exhausted at this point.

They do have a program for that but as Minneswede mention you have to push and ask for everything, thing is you got to know what to ask for, that is my problem, I don´t without taking time reading and finding out on my own first.

Good Afternoon Ladies. Just wanted to share my good news and give hope to those just beginning this journey.

Just had my annual mammogram I am now officially 5 years CANCER FREE.. Hooray..

Kattis, to me, a double mastectomy makes sense. I had DCIS and made that decision, I am not sorry. For peace of mind, especially with an aggressive cancer like yours.

I had NSM , very tricky as the breast tissue must ne removed leaving a very thin, fragile flap. I had an excellent team, still had some scarring. No infection or necrosis. Skin health is very important. I don't know if the nipples were worth it.

Regarding reconstruction, expanders, implants are their own little hell. I have had no problems, just the process.

Learn about DIEP. More involved but less time in the overall process. You could go flat now and opt for this later.

We are very lucky to have many options, just hard to decide. You are on the right track. Nutrition, overall health, emotional support. Stay strong. Let us know results of 12/1 mammo.

Hi!

I found out that I was HER2+ before surgery and I had a large lump (5 cm+) that was Grade 3 (growing like kudzu in the lab, my MO gushed), plus one compromised lymph node (fine needle biopsy).

My medical oncologist (MO) recommended chemo before surgery. This had two advantages: 1) chemo could shrink the tumor so I might be able to have more surgical options (a lumpectomy opposed to mastectomy); and 2) we could see whether or not chemo was doing the job. I had an MRI and PET scan before chemo; they would be compared to the MRI and PET scan after chemo.

My MO recommended Adriamycin/Cytoxin (four infusions every two weeks) + Taxol/Herceptin (12 weeks)/Perjeta (4 weeks). She likes that regimen because more of her patients finish it than Taxotere/Carboplatin/Herceptin/Perjeta. I agreed to chemo because 1) HER2+ cancer is very aggressive and mine was Grade 3 and on the move (in one node); and 2) chemo came with targeted therapies like Herceptin and Perjeta that have proven to be life-savers for HER2+ women. I also completed a year of Herceptin alone.

Chemo was very successful as it wiped out the active cancer in my breast and node. I was able to get a lumpectomy, and to avoid reconstruction, which can be time-consuming.

Because of my tumor's size and nodal involvement, I also did six weeks of radiation. I am currently on Aromasin and Zoladex for hormonal therapy.

I wouldn't have done anything differently. I was 46 at diagnosis, and have a lot of life ahead of me. I was able to work through chemo and rads, and I haven't sacrificed much at all in terms of quality of life.

Best wishes to you! No one really wants to do chemo; I hope you have a productive discussion with your MO.

If I could go back and do it over again, I would request lower dosages of TCH over a longer period of time rather the standard of care. If you read my previous post, you will see how the drugs have adversely affected my quality of life going forward (ie nerve damage).

Ashla-Thanks; helpful and easy to understand.

Hi Hazel!

My radiation oncologist and surgeon removed all my Levels 1 and 2 lymph nodes (long story), but I wouldn't necessarily advise you to get that done (increases the risk of lymphedema). Can your surgeon just remove a few "neighboring" lymph nodes, close to your compromised node? That's what my medical oncologist advised.

I have been reading this list for three weeks and still am not through it all! Wanted to say thank you to everyone who posts such valuable information. I start my first chemo (TCH) tomorrow. Very nervous.

Hallo all,

So today I met with the surgeon and all is decided. Surgery date moved forward 2 days to the 19th of Dec. I am greatful, really want this lump gone.

I will remove the entire breast and not do any reconstruction at this point nor breastreduction on my healthy breast. My cancer is aggressive and has not changed in size during the entire treatment before surgery so they are not sure if I would need more chemo or can do radiation directly before the pathology report. I find the risk too high to go ahead with a breast reduction at this point since it takes longer to heal, even if it would feel better. They would then have to wait with treatment in case I need it. My decision felt pretty easy. I want to deal with the cancer before dealing with reconstruction or the "look" of my breasts. I would never forgive myself if waiting a few months would "kill" me in the end.

Of course I am scared and hoping the pathology report will show that my lump is almost dead or completely dead at this point...if not, well the saga continues with more chemo. I am planned to start radiation and hormon treatment in January as of now, but of course this might then change. They can do the reduction on the healthy side after radiation (so in about 3 months) if things go ok. For the reconstruction on the other breast I have to wait almost 2 years.

This certainly is not a sprint but a marathon.

hi. I am new and never joined anything like this. I was diagnosed triple positive in September and am 1/2 way through chemo. Will probably take both breasts. I am so scared. I see a counselor but I still cry all the time. Is there anyway out of this nightmare?

This is a question for you Herceptin gals - I've had my 4th infusion and I was just wondering how often you get a blood draw to check your levels? They did one for my first infusion with another one a week later to check my levels. Everything was moving in the right direction but no more draws since October. I don't see my MO until the 30th it just feels weird not being monitored so closely which I'm sure is perfectly normal now that I'm on the mend. I was just wondering how often they check blood levels.