I feel like my life is on hold

OnlyGirlof5

I am so frustrated.

I was expecting my oncotype score back last week. My specimens were sent in after my MO visit on 3/9. I reached out to the MO's office and they called me this morning to let me know the test and results are on hold due to a needed pre-authorization from my insurance! After several calls, my insurance says they have had the request, but it's "under review" and will take another 7-14 days for approval IF no further information is needed from my doctor Then the clock gets reset again to oncotype's 7-10 day (or more) timeline. This waiting for answers is beating me down mentally. I have been anxiously awaiting these results for over 3 weeks now.

I get the clinic visit cancellations to protect from the virus. I am on hold for all of the plastics visits too. No TE fills or release to return to work. So basically, my life is on hold. I'm tired of this feeling.

Even though the virus is here, and our world as we know it has been uprooted, cancer is still an every day reality of upheaval to bc patients. The effects, treatment questions and decisions, and concern for recurrence are still a an every day worry we endure without this virus added to the mix.

I just needed to vent.

cutiekate

Since you have a node positive, I would go ahead with the chemo.

OnlyGirlof5

Hi cutiekate - unfortunately, it's not that simple and there are more factors at play. The tumor board at my institution does not recommend an automatic progression to chemo until the oncotype results come back. My node was microscopically positive, so radiation may be a better alternative. We are attempting to gather as much information as possible to make the best decision.

BCat40

That is so frustrating. Part of my treatment plan is on hold too so I know how you feel.

AliceBastable

I had a positive node but the oncotype score was 17, which meant no chemo. I know it's hard to wait, but you've had the surgery and nothing is going to happen to you during the delay. There are probably processing delays at all insurance companies right now.

ctmbsikia

Try and focus on the positive that surgery is done. I hope you get results soon. Definitely agree, team needs to see these results first and not just rush into chemo. My oncotype with 1-3 positive nodes was also 17 so no chemo for me. Actually I think I'm considered node negative with new standards as it was a micromet with 0.3mm focus. The 2nd sentinel node tested negative so no others were removed. It's hard to keep up and understand stats, as well as the waiting. Hang in there!

Hi Alice, hope all is going well with you.

JRNJ

onlygirl. So sorry. That does really suck. But at least you got your final pathology. Per the other post I recommend Scheduling a second opinion now as it might take a while.Note your node is macro not micro at 3 mm. Your extra nodal extension is micro. And chemo is a possibility with oncotype between 11 and 18 with a positive macro node and ee. But I also had lvi which didn't show up in your pathology. Note my pathology was also reviewed by Sloan and that took longer than seeing the dr. And they found some minor differences

OnlyGirlof5

The results came back. I am a 4. No chemo. Consult with RO next Thursday to determine if/when radiation will start. MO believes unlikely due to minimal levels found in 1/3 nodes. But with EE, she wants their weigh in.

My results have been available since the 20th but insurance was holding up releasing them. How frustrating. I'm glad it is over now and ecstatic over such a low score.

I will start Tamoxifen tomorrow. She discussed putting my ovaries to sleep since I am still perimenopausal, but does not believe this will provide additional benefits. She will monitor my estrogen levels closely over the next ear. When I flip, it's on to aromatase inhibitors.

JRNJ - maybe I mistyped. My spot on 1 node was 0.3mm (not 3mm). I believe that is micro? I'm not sure what you meant.

LiveLoveLaugh2020

Very happy that you have received good results especially after waiting so long Onlygirlof5!

JRNJ

Good glad you got your results and feel good about them. So frustrating dealing with insurance. You typed .3 cm which is 3 mm so yes maybe a typo. Macro is 2mm and above. And ductile is not as sneaky as lobular. There are some studies that show AIs are more effective than tamoxifen which is why some drs are recommending skipping tamoxifen and doing ovarian suppression. And tamoxifen can cause some problems in the uterus.

jelloelloello

Hi, OnlyGirlof5! I read that you did get your results finally, so congrats on that! I just came here to sympathize because I feel the same frustrations about things taking a long time and the frustrations of how the virus situation is affecting us cancer patients. Nothing more to add, just that I heard your message and am sending virtual support!

OnlyGirlof5

JRNJ - Yes, I am aware of the tamoxifen issue with the uterus. Since I don't have one, that is not a factor for me. Her thoughts were to skip ovarian suppression and see if my body will naturally go into menopause. She quoted studies that AIs actually wake up the ovaries, which we certainly don't want. Her other recommendation is the SEs are generally more tolerable with tamoxifen only. She did not leave ovarian suppression off the table, but more of a let's see what my estrogen levels do over the next 6-12 months. It's a lot of factors to consider. It hurts my brain.

Jelloelloel - thanks for the encouragement. It is a very frustrating time for all!

Yogatyme

Onlygirl, I am so glad you finally got you results and had such a low Oncotype score. All of the waiting is so hard and now with this virus, issues are increased exponentially. I noticed you are in Ann Arbor. Is your treatment being done at U of M hospital? My brother was treated there and was very happy with the system. I went to Michigan for graduate school in 1980-82 and recently went back.....hardly recognized State St!! The Borders Bookstore flagship store was there and was the most marvelous bookstore I’ve ever been in. Spent many hours (and $) there. Good luck going forward and let us know how you are fairing.

JRNJ

Interesting, haven't heard that one. But my gut told me to get the ovaries out, and not rely on a drug for suppression, they are like super ovaries, I'm 54 and was still regular before chemo. And I am frustrated because they cancelled my appointment with the gyn onc, and likely may not have the surgery because its considered elective, but I'm targeting end of May after radiation, so still a possibility. I also heard tamoxifen doesn't work as good for ILC, which I have, but you have ductile. The Rutgers Dr. said tamoxifen for a few years, than AIs. The Sloan Dr. said right to AIs with Lupron for suppression, and my MO agreed to ovary removal. And yes, I am scared of the side effects. Chemo put me into instant menopause and I've been having massive hot and cold flashes all the time. And as I'm weening off chemo lots of aches and pains already. Yes too many decisions, too many opinions, hurts my head too. Good Luck!!!

OnlyGirlof5

Hi Yogatyme - yes, I am at UM. The care is excellent. With the tumor board, I know none of my care is one person's opinion but a board of specialists.

JRNJ - That is definitely something to consider. With this discussion so new, I am already coming up with additional questions to ask her. I haven't even opened the information emailed after our call. My emotions have been in upheaval these past few weeks, so I decided today's good news of no chemo was good to rest on. I will dive in more deeply later this week.

AliceBastable

ctmbsikia

Hi! 👋 Doing well, just reading more than posting lately. Still keeping up with you on the Anger thread.