What is a reasonable wait time?

KatesMom03

Hi, new(boo)bie here.

I was just told today I have IBC, with no additional information. My Dr. referred me out to a Cancer Center located 2 hours away. I am waiting for the Cancer Center to call me with their soonest available appointment, but have yet to hear from them. What is a reasonable time period to wait to be seen before asking for another referral?

DC197

Dear KatesMom3,

I am so sorry that you have to be here, but you have come to the right place for advice and sharing. I do not have an answer to your question, but I do empathize with what you are feeling at this moment. Ever moment that ticks away seems like an eternity, and you want this terrible invasion to your body out ... and NOW! Well, take a deep breath, and calm down just a little. Cancer doesn't appear quickly and doesn't continue to grow quickly, so you have a bit of time to get this resolved. Surgeons are very busy, and they don't realize how excruciating the wait can be. If you don't get a call today, call them tomorrow. Good luck and let us know how things go. We care. (((hugs)))

~~Diane

Moderators

Waiting is a very stressful time and it varies with each center or surgeon, often dependent upon workload. We hope your wait is as short as possible. Also another trick is to ask to be placed on a call list if there is an earlier cancellation - not so easy with a two hour trip, but possibly may speed things up.

Also give the Cancer Center a call, sometimes paperwork gets mislaid and they should have called when they received the referral. No harm in checking.

Hoping for an appointment soon for you.

The Mods

Kicks

As you know with IBC - time is important. In my case I saw my PA at 11 on that Thursday and she had me AF the Radiology Clinic that afternoon at 1 for a new mammo (last one was less than 2 mths old and had been the same as all previous ones). Immediately after the mammo had an US followed by biopsies. I left the Clinic at 3. The next morning (Friday) at 8 I got a call from the Radiologist with the path report - IBC. Monday I saw my surgeon, Wednesday saw my Rads Dr and Thursday saw my Chemo Dr. There were a lot scans and tests in the next few days, port implant and 17 days after DX, I started neoadjuvant Chemo. There are others here who have had shorter time lines from DX to TX. All that was 5 1/2 yrs ago and I'm still here, doing great and still NED.

KatesMom03

Thanks everybody. I have a "consultation" this afternoon at the Cancer Clinic and hoping they will have already have plan ready. Wish me luck.

Trvler

Good luck.

april25

It was about a month between my DX and the start of my treatment (neoadjuvent chemo). I was told that it was OK to wait that long to settle things, but they'd prefer it not to be any longer than that. Everyone was telling me that the tumor was probably growing there for a while, so a little longer wouldn't make a difference. As to why that long... Just took me a while to get a second opinion and sort out what treatment I wanted to follow and to sort all the tests and doctors out. And even then, I changed MOs after my first round of chemo! And am seeing a new surgeon next week. And I changed my health coverage when I changed my MO, too! (Got to change during the recent Open Enrollment period, from an HMO to a PPO.) (I swear I'm not difficult... I just had a variety of options--and still am making my mind up about a LOT of it... and it wasn't easy to get everything into a place I could feel good about.) At any rate, I'm not upset at all that I didn't zip right into treatment. It just took the time it took... All the doctors I've talked to weren't concerned about it, either.

Trvler

April: It has been about a month and a half since I got my dx. I had two appointments with a BS, and then decided I didn't like him. I made an appointment with another BS and they couldn't get me in for 2.5 weeks. Meanwhile, another BS in the same practice as the original guy was recommended to me so I saw him. He told me essentially if I had treatment there, the first surgeon would be the one who did my surgery. Meanwhile, I consulted with an out of state third place over the phone. I was told to have chemo first, went to see a MO that I hated, made an appointment with a second one and can't get in until Tuesday. So like you, my treatment didn't start quickly. AT this point, it hasn't started at all. My port is scheduled to be put in locally by the first BS. I am sick of people trying to talk me out of going elsewhere for my surgery. It is my body and I am going to make the decision. My first BS also told me that it would be ok if I waited until early April to get started. I am not so sure.

KatesMom03

The wait continues. First diagnosed with IDC last Tuesday. The tissue samples from the hospital where the biopsy was done didn't make it to the Cancer Center prior to my appointment. The CC does their own pathology workup independent of the original pathology. It's my second opinion. Dr. was still kind enough to meet with me last Thursday and give me treatment options based off what she thinks. Options will change depending on the final outcome. They reassured me that I have time because breast cancers don't typically grow that fast. They need to get all the pathology complete which may take up to 2 weeks. I completely understand, but 2 weeks of not knowing something about a lump that seemed to appear overnight really messes with the head. Strangely enough I do feel better after talking to someone even though I still don't know everything. I feel positive about the CC I chose and the Drs there. It would be awful not to at least have confidence in that part. Hang in there everybody.

Tayhante

I had a biopsy March 9 and was just told i have IBC intermediate tumor is grade7. I am so sad and scarred. My heart has broken.

My gyn is on vacation and i will not see the surgeon until March 23.

I need support through all this. We are waiting for the:

1. Estrogen & progesterone receptor test results

2. HER2 results.

My diagnosis is still not complete

Do you know what treatments and steps are next? What about the staging? Treatment options?

What stage is for grade 7 tumor?

Thank you for sharing your experience.

Moderators

Tayhante, we warmly welcome you to our community, and we're here to guide you through the next steps. You may want to take a look at this section, Understanding your pathology report.

We send you gentle hugs,

The Mods

Trvler

Tayhante: I am not sure you got that grading right. I have never heard of grade 7.

Tayhante

I completely understand your frustrations and stress. I was diagnosed in March and it

took about a month to get all the pathology in. I hope you are being checked for your "receptors."

Make sure they are checking to see if you are HER2. I have HER2 Estrogen Positive and went for

a second opinion. I was able to get into a clinical trial and will start with neo adjunct therapy with chemo.

It will be almost 2 months before my treatment starts. Make sure you get a second opinion and do all your research before you finalize your decision. It's a crazy time when you have to wait for results. Take care of yourself and prepare for the journey!