How long after diagnosis you started chemo?

Aram

hi all,

I was diagnosed on Feb 5th but just today found out that it is Her2+ but the other receptors are negative. I had a scheduled double mastectomy for this Wednesday, but now it is postponed so that I first do chemo. The oncologist office called me and gave me an appointment for Feb 23rd. Isn't it too far away? From what I read Her2+ is very aggressive. How long was between your diagnosis and first chemo?

Thank you.

smc123

Aram, I was triple negative but my timeline was pretty similar.

Melbo

That pretty much matches my timeline as well for ER/PR neg, HER2 pos. I had my biopsy July 16th, got the pathology results from thesurgeon on July 21st, and started chemo August 7th. I think the surgeon said 4 weeks was the longest they would want to wait.

Aram

Thank you for letting me know. It is a very unknown territory for me and I know I should trust my doctors but it doesn't feel right to just sit on a grade 3 Her2+....

Aram

Thank you. I didn't know about the 4 weeks. Our diagnosis seem very similar. I have two tumors instead of one but still my dr believes it is stage 2. I will know more after oncologist's Visit. Have you done any MRI or other tests? How do they check if it is shrinking?

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Melbo

I had two tumors as well, one 2.8 cm and one 1.0 cm. My surgeon originally set me up for an MRI and bone scan, but my insurance wouldn’t cover the MRI since I was stage 2 and my oncologist didn’t think it was a big deal to skip it. I did get the bone scan though since insurance paid for it.

I could feel the tumor shrinking within a few weeks of starting chemo (the bigger lump was close to the surface of my skin), but I didn’t get a repeat ultrasound until after I was finished with chemo

Aram

Thank you for sharing with me. I am really glad your scan went well. I read everywhere the first days of not knowing are really hard and I can definitely feel it. Just trying to remind myself take it one day at a time but it is hard not to be scared of every pain.

mtspacekace

I received the diagnosis on June 4, my first chemo was July 7. I had a breast mri, echocardiogram, and had my port put in all before starting TCHP chemo. I had grade 3, multifocal HER2+..

DogMomRunner

I got diagnosed end of April, had surgery two weeks later and started chemo two weeks after that. I found the lump in March. So far NED. But I may have had a smaller tumor than you. I also had an MRI two days before surgery.

Aram

Thank you for sharing with me. It seems mostly it is around a month to get the treatment.

YesIamaDragon

Wow, yours is actually kind of fast! Mine was delayed because the HER2 took forever to come back, so I was scheduled for surgery on a Friday, my surgeon called me on Tuesday or Wednesday and told me the HER2 was positive so all of a sudden I was getting my port placed on Monday, then it was another 10 days before my first chemo. I think I was diagnosed about the 1st of June (or at least that was when the biopsy was, my not-so-screening mammogram was about a week before that) then first chemo was July 11.

YesIamaDragon

PS -- Sorry to rush in. Your head is spinning you don't know from one minute to the next which way is up right now! At least, if you are anything like most of us. I am so sorry you find us here with us. Remember to take deep breaths, and take one day at a time. It all seems impossible right now, but there are a lot of us here on the other side of chemo, surgery, radiation (and some of us even more treatment) . It does get better, believe it or not! And chemo sucks, but is more do-able than you probably think right now. Lean hard on your people. Let them take care of you while you take care of yourself!

WC3

Aram:

About a month. It probably would have been a little quicker but some things came up that caused a few delays but not by much.

Aram

Thank you YeslamaDragon. You are absolutely right. My head is spinning with all the thoughts specially waiting to do something, anything, about this beast. I try to repeat "one step at a time" when I am overwhelmed but it is difficult for my pessimist side not to think of future.

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Aram

Thanks WC3. At least I know it is not my dr and it is kind of the norm it seems. Though I wish they were faster....

Maskwearer72

I'm triple positive. Diagnosed 1/17/20 and my first chemo was 2/10/20. In between were a million scans and port placement. Your timeline seems appropriate.

Aram

I saw my oncologist last week and was told the chemo will start in next 10 to 14 days. Then fast forward this week, I got a call that my heart test is next Tuesday, and my PET scan for March 26th. I called the nurse and she said she will look into it to see if PET scan needs to be done before chemo. Has anyone had their PET scan after starting chemo? I feel like the dates they are giving me don't add up. If my heart test is next Tuesday, that is already 14 days from when I saw my doctor. I am just frustrated at this point feeling miscommunication between different parts.

Ista

My timeline took a long time. My biopsy was Nov 4th, my result came Dec 1st. Then mri, bone scan, genetics testing, ct scan, 2nd ultrasound biopsy & marker placement all in December. Jan 7th referred to oncologist, meet him Jan 14. First chemo was Jan 26. 2nd chemo was Feb 26. I just did a heart ultrasound today. So my timeline is wacky. I had all my tests because my breast surgeon thought I had node involvement so she wanted to see if it spread. So from diagnosis to treatment was 9 long weeks.

Aram

Ista, it seems long. Though mine has been relatively long as well (I am in Quebec) and we haven't completed all the tests yet as we are going into first chemo, some will be after first chemo. I even don't have my port yet. What is your chemo? Is it ACTH or TCHP?

Ista

Aram, Hello or Bonjour, Montreal is about an hour drive away. I am doing TCH. I didn’t get a port. I’m thinking about asking for one though or a picc line. I’m still thinking about it. At my first treatment my vein got inflared and still looks awful. But my 2nd infusion my other vein was fine.

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Aram

Ista, how many treatments you are supposed to have? Mine is 4 AC, 16 TH, and that is why a port is recommended specially as they put it I apparently have very fine veins, whatever that means or implies. We will see how it goes the first round.

DogMomRunner

Aram- the timeline may just be what it is due to when medical providers have open slots.

Melbo

the other thing to remember about getting a port or not is that chemo can make accessing your veins more difficult, and since you will need the herceptin for at least a year, you still have a lot of iv access in front of you. (Unless you’re getting the shot version of herceptin, but I don’t think that’s an option for most people.)

I had a port through chemo and really liked it, but it caused a clot in my jugular vein (a rare complication) so it had to be removed. Now I get my herceptin and Perjeta through iv access — but since I had lymph nodes taken out from my left side during my breast lumpectomy, they won’t use my left arm for any procedures. The nurses usually have to stick my right arm two or three times and do a little “digging” before they can find a good vein for the infusion. It sucks.