Overwhelmed and heartbroken.

I refused treatment after surgery and I am still alive.

It is not possible to stage a patient before tests and surgery. In my case, lymph nodes seemed fine pre surgery, but sentinel node had cancer. I was told pre surgery ONLY 3 lymph nodes would be taken. Wrong. The policy is then to remove 1st level lymph nodes which number can vary. In my case 12 were removed. No cancer except sentinel. Lymph node dissection is miserable. I live with a compression wrap on my right arm. I also sleep with a compression wrap around my chest. I rarely think about it anymore. I have adjusted. It is however, life altering.

My left breast had two lumpectomies. Cancer has not come back - yet. It has been 26 yrs. DCIS supposedly rarely becomes invasive regardless of grading.

It should be mentioned that cancer is graded 1,2,3. 3 being aggressive as cells look crazy.

Upon leaving hospital, I was given a thick book about cancer. In that book, it said a 1 cm tumor had probably been growing for 8-10 yrs. My oncologist told me that is bunk. He told me my cancer formed in 3 mos. I say b.s. to that as well.

When I got cancer first time, I knew I was sick. I was freezing all the time. After surgeries, freezing went away. 2nd cancer, same exact story. I know when I am sick.

Read all you can. I wanted lumpectomy with 2nd cancer, but I had 3 small tumors and thus nothing much would be left of breast after cutting 3 out.

Removing lymph nodes is very serious. I was not nearly informed enough about the ramifications after dissection.

The one thing I think we all learned through this process is to be your own advocate. Do your homework so you don’t rely solely on what’s recommended because a lot of us have discovered, some too late, that the side effects are sometimes worse than the “cure.” I have heard countless women say if only they had known beforehand.

The C book and brochures are overwhelming to be sure but you can at least have a good sense of what you might be facing with surgery, treatments, etc. and the possible fallout from these procedures. Question your doctors if you need toand take notes.

Remember it’s your body and your life. You can and should listen to your medical team as they are the proverbial experts but it’s still your call.

In my case had I not questioned my MO about taking Arimidex which she prescribed my bone situation might have been progressively worse. FYI the drug attacks the bones so it’s not advisable for a patient like myself with osteopenia to take it but that’s what I did for one year. I now have osteoporosis. I might have developed it anyway but a year on Arimidex didn’t help.

Good luck. We are here to help. This website was my lifeline. I’m 7 years out last August. So far, so good.

Diane

B-A-P - congratulations! Curative treatment when you're stage IV is a really big deal. Only now are people even believing it's possible!

It's lymphoma that is a very small risk with textured implants--not breast cancer....

With negative nodes, the recommendation likely will not be radiation. Chemo is another story because it is often based on the type/aggressiveness of the tumor, regardless of whether nodes are negative. Chemo is survivable, although not pleasant sometimes. Maybe consider doing the oncotype test to see how that might guide your decision.

Great news on the nodes! Radiation - do some research, as there are some types of radiation that can be done at the time of surgery. I'm not sure of all the requirements but one is called IORT. Best wishes!

Happy to hear the nodes are negative! Excellent news for great prognosis. I'm glad to hear that your wife will get her implants on top of the muscle. My first rec on was under the muscle and it was terrible for weight training! It was always jumping up and down with every rep😂 Eventually, due to tightening up from radiation, I had the implant replaced when I had to have latissimus dorsai flap surgery, and the new implant placed on top of ther muscle. So much better!!! More comfortable and I can do my chest workout again. Good luck to you and your wife, she'll be pleasantly surprised how little the mastectomy will affect her weight training, in time.💖

Hi everyone..another Celiac with BC here. There has not been a definitive link but I agree the increase in inflammation could not have helped!

Good luck with your wife's surgery. She is very lucky to have such a supportive and loving husband. She will need you in the upcoming months. Just FYI Celiac Disease has always ben associated with an increase in lymphoma. Keep us posted on your wife's progress...

heartbroken- best of luck to you and your wife today. I'm very pleased you have a plan in place and it sounds great. You and your wife will definitely be in my thoughts today. Speedy recovery

Glad to hear everything is going well.


Calikelly- I agree with you regarding not going to the gym. My surgeon encouraged Activity. Within 3 days post-op I was already walking a mile. I was walking three miles daily before my drains were removed 8 Days post op. I was NOT using weights. I was doing active assist and active range of motion exercises. I also had full range of motion within 5 days post-op. I started running slowly 2 miles within 2 weeks post op. I had my surgeons approval every step of the way because I did not want to take any chances. I never took prescription painkillers. I did not experience any pain only minimal discomfort from the drainage tubes. I'm also friends with several women who had bmx with reconstruction who never had to take painkillers and who were walking within 6 days after surgery with their surgeon's approval. None of them were using weights. As a therapist, I would most definitely stay away from strenuous activity and weights. Listen to your surgeon and listen to your body.

Great news! Get some rest. Thoughts and prayers are with you both.