Is This A Normal Timeline for Diagnosis?

Anonymous

Is This A Normal Timeline for Diagnosis?

Katek65

Hello Everyone,

Thanks so much in advance for any help with this---I never knew how anxiety provoking this could be and have gained so much empathy for women going through the same thing. As you all know, the waiting is hell. I have been in what I call Boob Limbo since July 23rd when I went in for a screening mammogram--it is now August 31st. I got the callback that day for a diagnostic mammo/ultrasound. It took my small community hospital 2 weeks to schedule that--the radiologist said they were "short-staffed." After that, the radiologist did think there was something there. The area of assymetry/nodularity is less than a centimeter but he thought it could be biopsied with core needle. I managed to get the ultrasound guided biopsy scheduled for a week later. The radiologist had trouble getting the needle to the spot (took 45 minutes of having the needle in me) and he wasn't 100% sure he got the area. It "disappeared" when he got the needle there. The results of the biopsy were benign, ruptured cyst with fibrocystic changes and nonsuspicious microcalcifications. The report basically reads "probably concordant" but maybe discordant.

I met with the hospital's surgeon who recommended a surgical biopsy. I was all ready to schedule that but the radiologist (wisely) wanted a breast MRI done. The results came back BIRADS-2 benign. The surgeon still wants to do the biopsy, and I guess I agree, although from what I've read breast MRIs pick up almost all cancers. But they can't fit me in until late September!

SO my question is, is it normal for a full workup of this questionable area in my breast to take over 8 weeks?

I do have a second-opinion appointment scheduled with a larger regional medical center later this week. But my nerves are shot. Before this started, I'd just gone through a endometrial cancer scare in early July....

Thanks to you all,

Kate

KIDI919

Hi Katek65, I was dx 9/19. I had a lumpectomy 11/19. If you live in a more rural area chances are you have to wait longer for tests to be scheduled. I live near a larger city so I didn't have to wait too long for tests. I'm glad you are going for a 2nd opinion. The larger facility might have a person that is "in charge" of breast care and helps you schedule tests and walks you thru your options. Best wishes to you.

December11

I found a lump on 11/17 and by 12/11 I had a diagnosis of cancer. From 11/17 to 12/11, there was a visit to my doctor, a mammogram, ultrasound, the biopsy, and waiting for those results.

AliceBastable

Since it's a small facility, you might be in the lower priority queue since your findings were benign. I'm sorry this is getting on your nerves. Try to remember, since you said you had an endometrial cancer "scare," that it turned out you did not have cancer. That "scare" was good news! This is the same so far, the equivalent of a routine oil change and not a transmission going out.

Katek65

Thank you both so much for your quick replies. I think the delays in diagnosis have to do somewhat with the discordant results, but I think it's time to move on to the regional medical center.

Katek65

So true, Alice! Thanks for your reply. Definitely feel like my "head gasket" has blown, though!

Roo73

Hi Katek65, I've been lurking on these boards for a while, and learned so much from this community. The women here are so brave, supportive and knowledgable. When I read your message, I had to post. I am currently waiting on a final path report after my lumpectomy on 11 August. The surgeon assumed he would have it within two weeks, but it has been delayed several times and the latest word is that he will call me next Tuesday (so 4 weeks from the surgery). I am at a large teaching and research hospital in a major city.

The biopsy showed an area of DCIS with comedonecrosis plus another lesion that showed up in variable places (from 1:00 to 4:00!) depending on the type of scan, and with variable characteristics (ductal and lobular), and highly suspicious for every possible reason. Don't know what that's about… since they had to go in to excise the DCIS, I think they just decided to take the whole thing out instead of doing another biopsy.

Anyway… the time between appointments (callback for diagnostic screening + biopsy, wait for biopsy results, appointment with BS, surgery) has been 10 to 14 days each time, so pretty similar to yours I think. I am trying not to read anything awful into the 4-week path report wait and really the most logical explanation is that a lot of people are on holiday in the second half of August. I teach at a university and try getting hold of anyone in administration during this time. At a teaching hospital, and I imagine that the same would apply.

Can't imagine going through all this after a prior scare in July! I really hope the bigger hospital can get you some information sooner! I hear you on the frayed nerves. Keep us posted.

(Edited 10:41am to correct typo)

Katek65

Hi Roo67, thanks for taking the time to respond and explaining your story. Sounds like you will have your pathology results soon and know what you are dealing with. I guess I never knew just how long these things can take--even though I work in the medical field. I do think AliceBastable may be correct in that I am not highest priority because of the sort-of benign results on things. Best wishes to you.

bcincolorado

Waiting takes a long a time even in a larger place. Especially now with COVID where I go for testing they space people out a lot and lave rooms after they clean them between patients even for 2 hours before another one can go in that one so they are not seeing as many in one day right no as a result. It is to help keep everyone safe though. Best wishes to you.

Roo73

Yes, and COVID protocols are constantly evolving, too. I keep reminding myself that I'm lucky to be COVID-free!

I have read through posts both on BCO and on a regional breast cancer forum (I'm in Canada), and it looks like anything up to 2 weeks between appointments, or between a procedure and results, is quite reasonable unless the situation is truly urgent.

LivinLife

I agree on fairly normal time frame. COVID still has places backed up some too and then add a smaller facility..... I can't even get into my dentist until late December, which is unusual, and he was open until a few months after COVID started - just lots going on for any kind of specialist these days...

Katek65

I just wanted to thank everyone for their input and provide an update. After more run around with my community hospital, poor communication and just a huge negative gut feeling, I got an appointment with the regional breast specialists clinic which I had last evening. The difference was astounding--first I met with an extremely knowledgeable nurse practitioner, who then went and consulted with the breast surgeon who she works with and is right there in the office suite. They reviewed my case and decided a stereotactic (mammogram guided) biopsy is the most appropriate next step, since the ultrasound guided biopsy may have not reached the right area. So no surgical biopsy for now--the surgeon at my community hospital offered no alternatives but surgical excision. I know I am pretty much back at square one, but I feel so much better dealing with an actual team of organized, compassionate healthcare providers who do nothing but diagnose and treat breast cancer. That was not the case at my smaller hospital. Best wishes to everyone.

KIDI919

Katek65, So glad you found the help you needed. Best wishes

LivinLife

Sooooo glad you had such a great experience at the new center. Your comfort level with the new center comes across loud and clear! So glad you called for that 2nd opinion.....

WanderingGypsy

I’m in the exact same boat. I’m really pleased to read you are getting good care. I, too decided to seek a second opinion with a larger facility. I’m hoping to to have as good experience as you.

When is your biopsy ?

Katek65

I had my second biopsy at the larger breast center on Sept 15. It was a stereotactic guided vacuum assisted core biopsy. They did accurately biopsy the lesion, unlike the previous biopsy at the community hospital, which missed it completely. The pathology came back benign as a radial scar but I also have atypical ductal hyperplasia, which needs to be surgically excised--sometimes (20% of the time) DCIS or more rarely, invasive cancer, is found lurking around ADH. Having ADH also increases risk for future BC by 4 to 5-fold, so I am now considered at high-risk for BC. I have an appointment with the breast surgeon to discuss that on Sept 23 afternoon. They do not use wire localization for the excision, but the radioactive seed localization, which allows for more accurate positioning and less tissue removal. I expect I will have the surgery within a month, but will post an update when I find out.

Hope things work out for you at the bigger facility--it most definitely was the right decision for me!

WanderingGypsy

Thank you for the update. I hope all goes well for you!