December 2016 Surgeries

I just wanted to chime in for those of you who are facing port insertion and chemo post surgery. I had all of that done first so am happy to share any information. As far as the port placement I was given general anesthesia but no pain meds after and I could have used maybe one or two so hold on to extras from your surgery if you still have them. It only hurt for a day or and they gave me ice packs which helped immensely. I was surprised at how effective the ice was. It takes a couple of weeks for your body to get used to the port. I am thin and don't have much to cushion mine but still after a while I don't even notice it anymore. I could eventually sleep on my stomach again and not feel it. It really isn't a big deal and makes the chemo so much easier. I would recommend you put the emla cream on it a full hour prior to your infusion and you won't feel a thing.

Check with your dr but I took a high potency B complex throughout my chemo which I think helped with energy and saved my nails. I also changed to a new toothbrush at every infusion to cut down mouth bacteria and never had any mouth sores. I was given taxol weekly and Carboplatin, Taxol, Perjeta, Herceptin every three weeks for a total of six rounds of chemo. I used cold caps during the taxol and carboplatin infusions and kept my hair. It was hard and a pain and I hated the caps but it was so nice to keep my hair and not have to discuss my cancer with every stranger and acquaintance i saw. I valued the privacy it allowed though it was difficult and expensive so not for everyone. I took an ativan prior to most of my infusion appointments and that helped keep me relaxed. I was so scared at first but the nurses were so nice. I made it and so can you! It was not as bad as I thought it would be. Remember to drink tons of water and try to exercise at least a little every day. Sometimes I could only muster enough energy for a five or ten minute walk outside but it really helped my mood. There are tons more tips on the chemo threads but thought i would share.

Thank you dccancer for the valuable info!! I still don't know if I'll need chemo but will incorporate your suggestions if I do! Happy to hear from the majority that the port isn't as scary as it seems. :-)

Pepper 43...Doing the happy dance with you!! That's fantastic news!! Will be praying for you next week and look forward to hearing a wonderful report afterwards! :-)

Well it seems I am headed over to the Jan Chemo board too. I met with my MO today and will be starting chemo 1/18. I will be getting my port on on Tuesday.

My MO said that chemo is normal protocol for BC that has spread to the lymph nodes. Mine was an 8mm tumor. The good news is that it was only in my sentenal node and 0/14 in my auxiliary nodes.

Even with all the research and talking about the possibility of chemo I always seemed to have a disconnect. Like it wasn't really about me. Today definitely made it more real.

Dccancer....was the cold cap covered by insurance? It sounds like you had to pay for it yourself.

Michelle117: I have one TE, so imagine that. One firm, round mound and a fleshy boob that I'm convinced is heading south more by the day because I can't wear a bras. My husband has yet to see me and I'm beginning to wonder if he ever will. It's extremely uncomfortable and affects my sleep, but I've seen "after pictures" of some of my PS's other patients and liked the results. I'm hoping it's worth it in the end. And trust me, I've been wondering about a bathing suit as well. Praying "the girls" look decent by then! :-)


GoingCrzy8: Thanks for sharing that video. My surgeons haven't suggested any exercises. As a matter of fact, my PS doesn't want me doing much of anything but normal activity, yet not lifting anything too heavy. Seems everyone receives a regimen to follow shortly after surgery, so I'd like to do something too to maintain/increase my range of motion. I appreciate it very much!

Lilo: After my diagnosis I still didn't feel as if I could really have cancer. That didn't fit into what I expected for my world. It wasn't until I visited our cancer center to meet my MO that it hit home. But even now, after surgery and all that goes with that, sometimes I ask myself, "Is this really happening to me?" I pray chemo passes quickly for you and all who will undergo it. I'm still waiting to hear. Blessings ~ Kim

Lilo, congrats on no Ax nodes! On this journey, every positive news we get is encouraging. Hope scans go ok. I get my port the same day so we can compare notes. I start my chemo 1/12 so hoping that goes well. Nervous!

MyJourneys, woohoo, good news on node negative as well! Awesome! Sounds like most of us who need the chemo will all be starting near each other so we can continue to chat and support and compare notes.

Kim, praying for good news for you as far as chemo not being needed. Also, I find myself saying the same thing. I wake up --check to see if boob magically re-appeared and I had a bad nightmare. LOL. The onco apt for me was really what made it real. As scary as it all is, just glad to have everyone on here to connect and chat with.

Hugs to all,

Traci

Lilo, doesn't sound crazy at all! Love the t-shirt!!

Lilo, did your MO offer the option of the Oncotype or the Mammaprint test? They are biomarker tests performed on your tumor that help estimate your risk of recurrence and the benefit of chemo. They used to be used only on node-negative patients, but now they've been validated for use in breast cancer patients with 1-3 positive nodes.

I had to ask my MO for testing (she originally wanted to do chemo because I had 2 positive nodes). But she agreed to request it and I came back at low risk of recurrence and with a potential chemo benefit of barely over 1%. She immediately changed her tune on chemo, and the decision was confirmed by a tumor board as well as my 2nd opinion consultation with Dr. Rita Mehta at UC Irvine (she's pioneered several chemo treatment protocols for breast cancer that are now standard procedure).

Ask for one of these tests! The Oncotype test is almost always covered by insurance. My MO prefers Mammaprint so that's what we did. My insurance wouldn't cover it, but they only charge patients $500 for the test and will waive that in cases of financial hardship.

Chemo doesn't benefit all breast cancer patients equally! And it is simply not true anymore that chemo is standard when you have 1-3 positive nodes.

Oncotype info: http://breast-cancer.oncotypedx.com/en-US/Patient-...

Mammaprint info: http://www.agendia.com/healthcare-professionals/br...

melle....I asked him about an oncotype test and he said that because it was in my lymph node he doesn't get them because chemo is medical protocol. When I talked to my BS she said the same thing. I do kinda feel that I am just going with the flow. It all is happening so very fast. Part of me feels like I want to be aggressive and it is only 16 weeks and then the other part feels like I jumped the gun on the chemo thing. I got my port yesterday so I am committed now.

myjourneys..I had genetic counseling and it was covered by my insurance. I would have paid I'd they didn't.

Kattis94...I wish I had information for you. I am praying that you find some answers and comfort soon.

kattis- I have been told by my MO that when you are dealing with estrogen positive cancer, the odds of getting a complete pathologic response after chemo are slim to none. I know it's harder to say than do but relax and think positive.

I returned home after my robotic radical nehrectomy yesterday (my BC diagnosis got me approved for a full body PET scsn that revealed a 6.7 cm solid mass in my right kidney/surgical removal pathology proved it was indeed another form of cancer. Chromosobe Renal Cell carcinoma- only 5 percent of kidney cancer peeps have it. Pain is awful - missing morphine from hospital.

I had no symptoms of kidney issues/ so were it not for BC pet scan that sucker would hear kept slowly growing and likely killed md. Because it was confined to kidney, removal meant No Evidence of Disease so they'll keep an eye on it over the years just in case.

I have been through 20 weeks of chemo for BC,bilateral mastectomy--and because of/after kidney surgery, I am seriously considering opting out of radiation and moving on to ovary removal, hormone therapy and an exchange surgery. Isthere test you can take to clue one in on efficacy of radiation

Lilo- PM me please! I'd like to have a heart to heart on radiation. I'm planning on ovary removal too. I want to do anything I can to reduce estrogen - plus met this lovely lady, Gladys, an 80 year old BC survivor from years ago who was now battling stage iv ovarian cancer. Her biggest regret was not getting them removed during cancer treatment!

Redemptive

My expansion was 100cc per week starting a few weeks after BMX. I did skip one week. My nipples survived and I had plenty of skin, just stretching muscle. I was filled to 600cc. Then I waited 6 weeks for exchange.

I always slept in my bed, with strategically placed pillows. Each weekly fill after the first two kept me in bed for 2 or 3 days, Norco at night. The last fill was worse than the exchange. I couldn't get out of bed by myself for a week. Sneezing almost killed me. After the six weeks I was accustomed to the expander stripper boobs. They were quite high. I understand my implants will settle over the next 6 months. I'm happy to have had no complications and the foobs are fine. Part of the happiness was getting rid of the TE.

When is your exchange?

Keiki... My SX was Dec 6. My PS wanted to begin the fills 2 wks later but I had this persistent redness that would not go away w/regular antibiotics. Finally it subsided and I got my first fill nearly a month later. It was only a half fill (60cc I believe) and it actually felt a little better. The following week I believe I got 90cc...he's being cautious. Again, it felt better to get the fills as if it gave the TE some "lift" off of my chest. I'll probably only need a couple more fills then will wait the compulsory 6 wks. Exchange will occur mid to late March. Are you finally able to sleep on your side??

Boob camp - Ha! I do smoothies that include kale (sometimes spinach) practically daily and have been consuming Vit C (along w/a host of other supplements.) The only thing I'm not doing (unlike when I had a c-section yrs ago) is putting Vit E or other healing oils on my scar. I want to so that it heals and lightens, but honestly, I can barely stand to touch my chest because of the odd feeling/numb sensation. Am I the only one who can barely stand to touch my chest?

Mellee - I'm so glad to read another person say their MO said no to chemo even with a node positive diagnosis. I was just told that I would not need Chemo or Radiation with 1/13 nodes positive and extra capsular extension present in the 1positive node. I was convinced that I would need at least chemo. The final decision was made after my Oncotype test came back at low risk (11%) of reoccurrence. The test also said that treatment with Tamoxifen would reduce my risk to 9% and treatment with Tamoxifen and Chemo would stay at 11% risk of reoccurrence. The numbers seem very crazy and I'm still in shock that I'm being told that I would not gain any benefit from chemo even with a positive lymph node. I'm still uncomfortable with my MO's treatment plan so I have a second opinion scheduled for Monday morning.