Question about how quickly treatment plans were set up

Kedahnya

I was diagnosed on January 29, 2018 with IDC after finding a lump, having a mammogram followed by an ultrasound and then an ultrasound guided biopsy. After receiving the results from my primary care doctor in the morning I had an appointment with the general surgeon 5 hours later who explained the different options and told me that he would be meeting with the tumor board that week but that we could probably have surgery scheduled the following week and then I would more than likely be meeting with the oncologist to discuss chemo and radiation options. I was relieved because I like having a plan and I hate waiting. After meeting with the tumor board he called back to say that they decided I would benefit from a petscan before surgery. I met with the oncologist that week also who said I would more than likely be doing chemo before surgery but nothing would be decided before the petscan and she also wanted an echo and a brain MRI. Finally got all those done last week and met with the surgeon and oncologist both this past Wednesday. Apparently there was something on my occipital bone that they think may be the breast cancer has spread but both told me that they would more than likely remove the sentinel lymph nodes to biopsy hopefully Friday (today) and go ahead and schedule a port placement since either way I will be doing chemo but they were discussing the case with the tumor board on Thursday and would let me know when we could do the surgery. Got the call yesterday evening that they are now referring me to a different doctor at a hospital 2 hours away from where I live whereas their hospital is about half hour away. So now back to waiting on that doctors office to call and set up an appointment which will hopefully be no later than next week.

My question is does it normally take this long to come up with a treatment plan or is it just because of as my oncologist put it my "weird medical history" and the findings from the petscan? The only family history of cancer in my family has been thyroid, skin cancer and leukemia in two distant cousins until me. I was diagnosed with renal cell carcinoma and had one of my kidneys partially removed in 2016 with nothing new showing up yet and they found 5 nodules on my lungs last year still very small that they aren't sure about so we are just doing the watch and wait and so far no changes in a year and nothing showed on the petscan for either my kidneys or lungs. I just don't do well sitting and waiting for the next test or next doctor and friends and family keep asking about what's going on and I try to update them at least each week but it's always well we have to wait to see what they say next week. Any thoughts on if this is just a normal wait time or constructive ways to help with the waiting?

Beatmon

What kind of Dr are they sending you to...it’s good you saw the oncologist now, because a surgeon does not need to be the one to plan your care. I would go ahead and get that port so it gives it a little time to heal before use. Many of us had to use ours the next day..

Are you in a very small town? Wondering why you are being sent out. Is there not a breast surgeon at your hospital rather than a general surgery? And do you know who will place your port, you want to make sure they have done a lot of them.

Not to be scary even more than you are, but if they have found a remote tumor in your occipital area...most do not have breast removal first and some never, .just big chemo. The thought is that the horse is already out of the barn and let the chemo kill it out.

Most get started within a month on some type of treatment. You will find many recommendations to start an anti anxiety during this waiting period. Some ladies start meditation.

Hopefully you do not have a remote tumor and can get doing on all of this as soon as possible. The waiting is part of the worst. We all like to get a plan and work the plan.

Are you in the United States

Kedahnya

I'm not really sure what kind of doctor they are sending me to I was driving at the time they called me to let me know so I didn't get a chance to write down the surgeons name and it was hard to pronounce so not sure how to spell it but they were referring me up there about the lymph node biopsy. I live in a smaller town in Missouri outside of a Military base and probably less than 10,000 in the combined communities and no hospital except for military which I am not so although we have primary care doctors at the medical center it's half an hour to the nearest hospital and even that town is less than 20,000. However they do have a cancer treatment center there which is where I see the oncologist at. A friend was concerned about it being a general surgeon also and wanted me to see about treatment at Columbia University where I had my kidney surgery and where my pulmonary doctor is but that is also 2 hours away and mostly back roads. The doctor the tumor board referred me to is in St. Louis at Washington University and is all interstate to get there. I also have extremely high control issues about driving so being so far away and then having to ride with someone else all the way home is a very big issue for me. After my kidney surgery my Mom drove me home and what should have taken 2 hours took a little over three because I was having panic attacks and I had quit taking pain meds the day I left the hospital because the dr told me I could drive if I had been off of them for 24 hours.

The general surgeon and the oncologist had explained that if it had spread that they would more than likely not do surgery on the breast unless there were other issues with it and just do chemo and then radiation. My main concern is what if there is cancer on the bone but it's cancer that has not spread from the breast and now we are just taking more time waiting on the next doctor. I have had other cancer that was not related to the breast cancer so there's a slim chance that could be the case here too.

light1candle

Hi Kedahnya, I’m sorry you are going through all this and I know the waiting for information and for treatment to begin is terrible. I can’t answer your question about how quickly treatment plans are usually set up, but I wanted to chime in here about your referral to another hospital. I live in the St. Louis, Missouri area and I can tell you that Washington University and Barnes Hospital’s Siteman Cancer Center is the only National Cancer Institute designated Cancer Center in Missouri. That means that they have been recognized for their expertise and the quality of their cancer care and research. Because you have a complex and unique medical history, I think your doctors are wise to refer you to Siteman for a consultation to insure you get the best possible treatment. Hang in there! Wishing you the very best.

Barb

Kedahnya

Thank you for the vote of confidence in the hospital up there. I’m trying to focus on understanding all of the different tests I’ve had done over the last few weeks and make a list of questions and concerns that I would like to address. I’ve also started looking more in depth at my previous ct scans and such. I’m not one to stress out over every little thing the radiologist puts in their report but some things that were put in I hear it’s nothing to worry about from my doctors but I’m not so sure. I am not one to google everything and think I’ve got some rare disorder or think the worst but how do you discount what the radiologist says because of what the doctor says.

moth

I think if you're within 30-60 days you're still doing fine. I actually think it's good that there's a tumour board and a multidisciplinary team looking at it and pooling their knowledge and resources.

here's a blog post from a breast oncology surgeon discussing what the research says about delays and optimal timing of treatment https://respectfulinsolence.com/2016/01/12/breast-...

I hope your team is wise and and develops the best possible treatment plan for you. Best wishes.

KBeee

The timing sounds ok; I think they are wanting formal opinions from people who work with complex cases. You likely will have chemo close to home, but these other docs will choose the regimen and check in with you and your local docsperiodically.

Anonymous

Kbee just wrote what I would have. I was dx 9/29 and didn't get my chemo port placed till Nov. 2, and chemo followed a few days later. So it does take some time. I also went and got a second opinion, which took a few weeks to set up as well.

I'm so sorry you've having to deal with this, but it sounds like, if you are being sent to a specialist, you'll be getting good care there. You want the gold star treatment for this kind of disease, and it sounds like your initial team realizes that and wants you to as well, even if you might be a bit inconvenienced by traveling further.

I drove 45 min one way for chemo infusions and radiation tx. It wasn't very much fun, but because the care 45 minutes away was better than what I could get in my home town, I was willing to do it for five months.

We are here for you and understand.

Hugs

Claire in AZ

jo6359

kedahnya-i was diagnised on 12/8/17. I started with a small IDC with a scheduled lumpectomy. An MRI and pet scan was ordered. The MRI showed a second IDC tumor same right breast. So the lumpectomy was canceled for a bilateral mastectomy and SNB. I had my surgery January 29th. Yes I was climbing the walls. I kept envisioning this tumor growing aggressively from minute to minute. The wonderful people on these boards helped keep me sane and provided incredibly good feedback and support. I did take Xanax for 5 days. It did help.

Kedahnya

Thank you all for the advice and support. A little calmer now knowing it's not totally abnormal for it to take a little while. I will have to discuss meds to help with the anxiety and panic attacks.

Beatmon

I’m from Oklahoma and have heard good things about the two centers in St. Louis. The hospitals probably have connections for overnight stays at hotels close by at lower prices if giving up your own driving causes such anxiety.

Kedahnya

I’m still waiting on them to set up the appointment due to some miscommunication on the referral but I did find out they are referring me to a neurosurgeon so I guess it’s not for a lymph node biopsy but about the place they found on the occipital bone.

I may check out the overnight places to stay as a last resort but I still have 2 children at home age 6 and 16 so I try to be home if possible

rdeesides

It took 2 months for mine to get fully in motion. So frustrating!