Wife just diagnosed

hchen42

@Cliffyw, I highly recommend MSK. It may not be practical for you, but getting a second opinion may be helpful. My wife had surgery (bilateral with reconstruction) around the same time as your wife. I've been busy so I haven't been come to the board. We've seen an oncologist and chemo is recommended. My wife's prognosis is good, not great. My wife's so paranoid now she's request a Pet scan just to be sure cancer cells aren't spread (lymph nodes are negative).

Our oncologist at MSK claims MSK has over 22 full time oncologist dedicated to breast cancer only. She is going to present our treatment plan with her colleagues and determine the best course of action.

Thanks to everyone here for the support and help. I don't always visit here.

Cliffyw

Hi hchen

It is good to hear from you. We actually will be visiting MSK next week in order to get a 2nd opinion on medical and (hopefully) radiation oncology. Our oncologist locally has recommended AC-T and we would like to see what the MSK onco advises. We did have a CT scan (not a PET though) and bone scan, which did not indicate any spread.

hchen42

Hi Cliffyw,

Our oncologist has recommended AC-T first. We are meeting up with her tmw (Tuesday, 9/19) to get the final treatment plan. I'll report back here tmw (or Thursday). Wife will have a PET scan.

Icietla

http://www.goodwishesscarves.org/

http://www.goodwishesscarves.org/request-a-wrap/

Icietla

http://lymphedema.com/alertform.htm

Tara17

i dont want to hijack this thread, my apologies, but I have a question regarding lymphedema based on some of the above posts. Chisandy, I see that you have had four nodes removed, but developed LE anyway? My surgeons and nurses have all sworn up and down that I had "only" sentinel node biopsy ( I also had four nodes removed) and they actively discourage any risk reducing behviours ...can you tell me your thoughts please ?

Thank you!!

ChiSandy

Tara, though sentinel node biopsy carries a lower statistical risk than does ALND, any time even one lymph node is removed (or a lymphatic system vessel breached), you are at lifetime risk for LE. Therefore, you must always take precautions for that arm. Never allow the arm on that side to be used for needle sticks of any kind or blood pressure cuffs. Moisturize the skin and protect against sunburn. Do everything you can to prevent insect bites--if you get one, wash it, apply disinfectant or antibiotic ointment and don't scratch! Same goes for pet scratches & bites, brushing up bare-armed against brambles or thorns, paper cuts, even minor scrapes & burns. Any breach of the skin on that side has the potential to become a life-threatening cellulitis, especially if you have already developed LE. If you plan to take a flight >4 hours long, get measured for and purchase a compression sleeve and gauntlet far enough in advance to be able to exchange it for one that fits. If you don't yet have LE and want to do upper-body resistance or weight training, wear compression and start with the lightest possible weight or resistance and work up gradually.

Get a medical-alert bracelet with an LE warning (and drug allergy and any other chronic conditions if you have them)and wear it on that wrist. Make sure the emblem is pink because that's how emergency personnel and nurses are trained to recognize an LE risk.

Your doctor probably had little to no lymph system education in med school. I was lucky to be at a cancer center and hospital with two LE specialist doctors & two LE PT/OTs, so my surgeon and her NP were attuned to the risk and my arm & hand were measured even before surgery.

Sounds scary and depressing, but it isn't if you prevent or catch it early.

Tara17

ChiSandy --thanks for the extremely detailed reply ! This is so thoughtful of you ...really appreciate all the tips. Shall add this great advice to my folder. Thanks so much ..tara