Just Dianosed - Getting Nervous

cancer2022

Background:

1996, age 46, right breast, 2 cm lump, Stage 2, chemo, radiation, tamoxifen 5 years

2022, age 72, left breast, Biopsy of micro-calcifications in a cluster

Results

IDC Grade 3, 5 cm area

Awaiting results of genetic testing

SaviScouts on Feb 18 and Lumpectomy scheduled for Feb 24

I understood my 1996 breast cancer and treatment. Now I am age 72 and can’t seem to understand this last biopsy. I immediately felt like I would get a lumpectomy and radiation and go on with life. But as I research and try to grasp this new biopsy result I am getting nervous. I am losing my positive attitude. Grade 3 is scary, a 5 cm area is scary. Awaiting genetic testing result is scary. Afraid it may be impossible to get clear margins with a 5 cm area and it might be in my lymph nodes as it was in 1996.

Any comments or advice are appreciated

Salamandra

I'm sorry, that sucks. I've seen women here write that the second time through is so much harder.

That said, I would say to try to remember everything you *don't* know. You don't know whether the hormonal profile will respond favorably to treatment (whether HER+ or ER/PR+). You don't know how the tumor will respond to chemo, if that's recommended. You don't know that you won't have a low oncotype. You don't know what kind of margins you'll get - and if you have a good surgeon, they knew what they were doing when they recommended lumpectomy. And you might not know about some of the great advances in treatment that have happened since 1996.

There's a lot you won't know until your pathology and oncotype come back, and it could be favorable. I really hope it is. But even if it's not, you can trust yourself that you will be able to deal with the reality of something known much more readily than the prospect of something unknown. The unknown is terrifying. Do what you have to do to get yourself through this time. A positive attitude is not mandatory! You just need to show up.

Hang in there and keep us posted!

cancer2022

Thanks Sal….

You are right, I don’t know everything yet. I just get the feeling that the breast surgeon is maybe being overly optimistic. Although he did say that a mastectomy could be in my future if the lumpectomy goes bad. Thanks for listening. I tend to stay positive to friends and family, but appreciate this forum to share my real concerns

edwards750

I am so sorry you find yourself back here. One time is enough misery - twice seems unfair to say the least.

Did you have the Oncotype test the first time? On second thought they probably didn’t even have it then.

The reason I mention it is because I had a micromet show up on my path report after my lumpectomy. My BS was surprised; I was stunned. My MO ordered the Oncotype test and thank God she did. My score came back low@11 so I dodged chemo. I was so scared I had even considered having a MX after that report came back.

We are here for you. Keep the faith and keep us posted.

Diane

cancer2022

Thanks. I have never heard of an Oncotype test until today. Sounds like it is for recurrence and early stage. I won’t know my stage until after my lumpectomy. I’m not even sure I am considered a recurrence because the cancer is in the opposite breast and is in micro-calcifications and not a lump. Maybe I am considered a new breast cancer diagnosis. I’m not only nervous but confused as well. I remember that I was estrogen positive back in 1996, I am awaiting the results from my genetic testing.

Beesie

Did your biopsy result include both DCIS and IDC? Calcifications most often are DCIS, although there can be some IDC mixed in. So I'm wondering if the 5cm might be a combination of DCIS and IDC. While both need to be removed, only the IDC counts towards the staging and the treatment plan.

With my first diagnosis, I had over 7cm of DCIS in two large clusters, and mixed in there was just 1mm of IDC. That was enough to change my diagnosis from Stage 0 to Stage I but that's about the only effect it had. I'm not suggesting that you will have such a small amount of IDC but it may be premature to assume that the whole 5cm will be IDC.

And yes, if this is the opposite breast, it is definitely a new primary breast cancer, not a recurrence. Unfortunately, as both you and I have found out, once diagnosed with breast cancer one time, we all have about double the risk (versus a women never diagnosed) to be diagnosed again, with a new primary.

cancer2022

Thanks Beesie. I understood the doctor to say it was only IDC. What was your treatment plan

Vandercat

Listen to Salamandra. I am seeing cancer as an onion-like miasma - there seem to be many levels of knowledge and places to make decisions (and it makes you cry). This community is completely behind you.

(((hugs)))

wondering44

cancer2022,

I had a mastectomy in August 2021. Before the surgery, the area was considered less than 2.2cm and had minimal DCIS. I opted out of a lumpectomy for aesthetic purposes, and I thought it would get me out of radiation. After surgery, the tumor was upgraded to 8.5cm with extensive DCIS. I got clear margins on the pathology report which included clear nodes from the surgery.

My Oncotype came back really low at 8, which was great for low-risk recurrence. That meant radiation and hormone blockers for the treatment plan.

It seems to take forever and a day to get the Oncotype results back. There will be hurdles with the unknowns while you wait for more information. I think my biggest hurdle other than that was trying to decide if I'd take AIs for fear of side effects. Although I started off with a little less than my MO wanted, I did go full dosage after a short time without any issues except for some night sweats. The first couple of weeks, I did have lots of joint pains, and those have since gone away since I started to the full dose.

Totally okay to cry while you wait for more information. The process is overwhelming at times.

Sending hugs your way.

cancer2022

Thanks. Lots of good advice here for sure

cancer2022

Thank you for your words of experience. I have seen several women say they didn’t want radiation and I wonder why. Radiation the last time was pretty easy for me. I went to work every day and stopped after work for my radiation, for 29 days. Makes me wonder if something has changed since 1996

wondering44

cancer2022,

I don't know if radiation is different from when you previously did it. Honestly, I was unfamiliar with it and afraid to do it. I was AFRAID of unknowns. Call me a chicken, lol. I wanted my life to stay right where it was before the diagnosis. It took me time to realize my life is forever changed from cancer. I've learned to try to keep the change positive to my lifestyle. So that was my reasoning for not wanting rads. I can't speak for other women. :-)