Newly diagnosed

Kgregorin · 06-17-2014, 09:53 AM

Hi, I was diagnosed May 9, 2014. I am not sure how to enter all my information into my profile. Please help.I am brca2+. My mother had breast cancer when she was 53, she is now 86. She had a single mastectomy beck then. My daughter was diagnosed in 2010 at 32 yrs old, stage 4(her2-er+). That is when we were tested. My two daughters and I are positive, my son negative. Since the testing my other daughter and I are monitored with mammo sand MRI every six months. In sept. 2013 my mammo was clear. In April 2014 my MRI showed a small something. Ultrasound was inconclusive, so they did an MRI core biopsy. It was cancer, so on May 29th I had a double mastectomy with expanders For reconstruction. Pathology reports comes back her2+, progesterone+, the Nottingham histolgic score grade is 3, stage 1 and tumor size is 7mm. I meet with the oncologist on Monday. I'm assuming I will need chemo and herceptin a from what I have read. Will this delay my reconstruction. Also , will I need a port and can they place it in my chest since I have had a mastectomy. Sorry for all the questions, my head is just spinning. Thanks for your help.

crb · 06-17-2014, 12:11 PM

Hi there...sorry you have to join the club, but you found an amazing place to ask questions, vent, etc! The women here have been so helpful to me over the last 6 months. I believe there are a few others here that had cancer found after a prophylactic mastectomy, so they should be able to help with a few questions.

I found my cancer, and after biopsies, it was Her2+, so I did chemo before my surgery (which will be Friday). I did 6 rounds of TCHP and start today on the Herceptin only every 3 weeks until next February. I don't know if the chemo will delay your reconstruction, and I am assuming they can still do a port because I have one and will be having the bmx (port is about 2 inches below my collar bone).

You can edit your signature/profile by going under "Quick Links" up on the right. I would take a deep breath, and do NOT Google Her2+.....most of what you read is outdated research, prior to Herceptin and Perjetta! I cried for days when I did that, until I looked at the research dates and realized how old most of it was...

bwAK · 06-17-2014, 12:16 PM

You actually only asked one question!

But yes, you typically receive a port when you have undergo chemotherapy. It’s not too bad of a procedure, about a 30-45 minute surgery under full anesthesia, and you’ll probably have it in you for a year (for the full duration of Herceptin). My wife has not been bothered by it for the last six months, sometimes it may itch. Regarding the surgery, it will probably seem like cake to you after finishing your major primary surgery. Based on your presented pathology, it does sounds like you will receive chemotherapy – which is good and very effective for Her2+ breast cancers! Also, way to catch it early and opting for mastectomy -- considering your strong family history of breast cancer (it sounds like a good idea to me!).

linzer · 06-17-2014, 03:53 PM

I was dx'd the week after you. I agree that it's no fun to be "welcomed" to this club, but I've found the information and encouragement from this group to be invaluable.

I don't know whether you will *have* to get a port but I can share that I had one placed a week ago today and it wasn't a bad experience at all. I have never had a surgical procedure and was scared. It didn't hurt, and has healed nicely. I agree that it feels a bit different, and it's a bit itchy but otherwise fine. I did ask how many of these procedures my hospital did and they said 10-15 a day - so I felt like it would be done with expert hands and it was.

Good luck to you! I'm going for my second taxol tomorrow... long road ahead, but thankful there's a hopeful solution of sorts

Cat · 06-17-2014, 06:06 PM

I had chemo before bmx so my port was placed before surgery and reconstruction. My guess is reconstruction may wait for chemo due to decreased immune system thus increased chance of infection but don't bank on that since it all depends on the individual and response to chemo and their Dr. It will probably feel like forever but it will be for the best regardless and you want the best long term results.
I'm sure it's been said but my surgeon told me this isn't a sprint it's a marathon.
Cathy

SoCalGal · 06-17-2014, 06:12 PM

I've never had a port and never am going to have a port because I just do not want one. Everyone has their own opinions on the subject, just wanted to pop by and share...it's possible to "have it your way" Burger King or not, and cancer notwithstanding.

Lien · 06-18-2014, 02:35 AM

I'm sorry you need to be here, but glad you found us. It seems you caught it early and should have an excellent shot at long term survival. Your mother seems to be doing well too. That's good news. You probably will get chemo and Herceptin and a port, which may well lead to postponement of reconstruction. But things may go more smoothly, and it seems like a good idea to share your thoughts about these things with your medical team. If reconstruction is very important to you, they may be able to find a way to do it sooner.
Your path report is very similar to mine, minus the BRCA status. Mine was never tested. When I was diagnosed, Herceptin was not available yet. I was one of the lucky ones; I'm ten years out from diagnosis.

So you have a really good shot at surviving this. Perhaps waiting a bit longer for the reconstruction is not so bad if you realize that having chemo and Herceptin will improve your chances of enjoying that perky look for much longer. You will find that there are more treatment options now, and that there are good meds for nausea etc. You do have to work with your docs, though, because they don't always find the optimal meds for you straight away. As soon as you have problems, mention them. There's a lot they can do to alleviate side effects. Keep asking questions!

Jacqueline

Lisalou · 06-18-2014, 02:10 PM

A port can be placed after BMX, mine was. I was advised to wait for reconstruction til out of chemo for 1 month, which will be in August and so looking forward to getting rid of theTEs. Good luck with treatment. Wishing you the best.

chekmark · 06-18-2014, 06:40 PM

I could be wrong but I was told that anything under 1.5 cm doesn't always require chemo, u may not need it although with her 2 I would try for the herceptin if that is still the case..I'm sure someone will correct me if I am wrong. I did not have a port, it was never really discussed with me, I had no problems with the IV's but since they had to use the same arm I do have a lot of scar tissue, I also was told to wait for recon so that NOTHNG interfered with treatment. Good luck to you and your family.

roz123 · 06-18-2014, 07:48 PM

Anything over 5mm gets chemo. Ive seen women get chemo for smaller than this. Biology trumps stage with her 2

Jean · 06-23-2014, 10:44 PM

Think of Her2 this way when considering chemo/herceptin....
It's like being a "little bit pregnant. Size is not the issue with Her2 this has been established for many years now.
Her2 is aggressive and likes to travel, not my words,
"Dr. Salmon"

Kgregorin · 07-09-2014, 01:34 PM

Well I got my port put in today. It really wasn't bad at all. Tomorrow I have my first treatment, I'm a little anxious...ok a lot anxious. But I'm not taking any chances with this her2+ thing. On another note, can anyone tell me if these tissue expanders are uncomfortable for them. Also they look so odd shaped. I hope the implants look and feel,a lot better.

Nurse4u2day · 07-09-2014, 02:29 PM

I had my Bmx on June 11th with tissue expanders and it has taken me a month to get somewhat comfortable with them . During the Bmx they did put 100 cc in each one. Well yesterday was my first expansion and doc put 100 cc in each one again , which from what I hear isn't to common. I must say although not necessarily painful it is super duper uncomfortable! Hoping it gets better. But I still have 300 more cc to go. Nov/ dec can't come soon enough to get these things out . Best of luck with chemo. You got this and one day soon chemo will be just a memory for you as it is for me. Finished chemo in May of this year .

jaykay · 07-09-2014, 05:00 PM

Tissue expanders were uncomfortable - like bowling balls on your chest. That being said, I had mine for a year before my exchange surgery (after chemo and radiation). They will look better once they start being filled. And yes, implants are more comfortable!

You'll be fine tomorrow - anticipation is worse than reality

Best
Janis

Kgregorin · 07-12-2014, 11:46 AM

Well I had my first chemo treatment on Thursday and felt great. Felt really good the day after and then realized that I had no achy knees...realized it must be the steroids. Today, however, I felt ok and then got hit with some diarrhea. Feeling somewhat washed out right now. I hope that is the worst of it. I realize everyone is different but with each weekly treatment will the drugs build up and will the symptoms get worse?

suzan w · 07-12-2014, 01:12 PM

I opted for no port. Even though the chemo was very hard on my poor little veins I never wished that I had gone the port route. I also had no reconstruction and have always been happy with that choice as well. I felt that the less surgery was best for me. You did not mention what kind of chemo you are getting. I had Adriamycin/cytoxin and it was rough!!!

Kgregorin · 07-12-2014, 01:33 PM

I am getting tazxel and herceptin weekly. First treatment was Thursday , felt really good first two days. Today a little sluggish and some diarrhea but still ok. I hope I continue to feel good.

carlatte7 · 07-12-2014, 07:33 PM

I asked my chemo nurse the exact same question. You can read my stats, and i can say I wasnt sorry to not do those last 2 TCH. Each treatment got just a little "worse"- diarrhea show up earlier, and the slight tiredness i felt at first became soul-crushing fatigue. Those few days were so worth it though because I'm here and healthy!! You will be too!