It has been six weeks since the initial mammogram that showed some issues and the pathway has included biopsies lumpectomy with SNB and tons of pathology tests. But I now know that I have DCIS and invasive ductal carcinoma with no node involvement and clear margins. I am stage one grade 3 estrogen and progesterone positive. HER2 neg. I do know that several tests have shown my cell type to be pretty active and proliferative even though my surgeon assures me all of that was taken out. I know that there could be other unseen spots or it could show up again so radiation and possibly chemo.
I will not be able to see the oncologist and have the Oncotype score until later in May. I am worried that my score is going to be high because of the tumor grade and K 1–67 result.
I have several events happening in the first part of June and just wondering for anyone in this situation if chemo is needed how quickly do I have to dive in. I don’t want to do anything to risk my chance of surviving this ……nut it is hard to plan anything. If I need a port can I fly the next day? Is there a waiting period between port insertion and chemo?
I would love some conversation with those who have been in similar situation.
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Hi there.
I am similar to you in lumpectomy, SLNB, nodes all clear. Stage 1 grade 3 tumor inside some DCIS. All removed and clear currently. Mine is different as hormone neg but HER2 positive, but I was told 6 rounds of chemo. 3 x EC and 3 x T. I also have to have some targeted treatment for the HER2 status.
I think all places/ speeds different but to give you some idea I had my Onco appt 14/04 and started chemo 25/04. I think it generally happens quite fast. I don’t have a port, but a PICC line and to be honest i wouldn’t feel great about travelling once you are on the treatment path, at least until you face some experience of how it will affect you.
To give you some comfort, my first chemo was last week (I was scared stiff) and it wasn’t too bad. I have not had many side effects and consider myself lucky. I also cold capped.
Not sure if this is helpful, but I know how it is when you have more questions than answers!! Awfully hard to accept that plans can still be made but might well need to change.
Wishing you all the very best.
Xxx
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Hi @by130 - I was slightly different to you in that I had mastectomy but they like to allow you to recover from surgeries before starting chemotherapy. I was diagnosed with multi focal Grade 2 IDC HER2+ ER- with multi focal high grade DCiS
As a guide my timeline was as follows last year
July 23rd initial Clinic visit - told most likely cancer and several biopsies
Aug 7th - First results but more biopsies needed
Aug 27th - Final confirmed diagnosis and surgery booked
September 23rd - Left sided mastectomy with SNB , followed up with results and referal to oncology
October 21st - Oncology appointment and chemo scheduled for November 21st do I could go and see Kasabian on 16th which I’d had tickets for for months !
Assuming you had the surgery results , was anything mentioned about chemotherapy at that point ? My surgeon told me at this appointment I’d need chemo .
They may need to discuss it in the MDT but I think they like to start chemo within a certain time frame after surgery if it’s required x
Have they said if you’ll need radiotherapy at all
?
Arty1
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I can only give you my experience on the port question. It was fitted the day before I started chemo. Mine was fitted under local anaesthetic so I didn’t have any of the restrictions you would be given if you had sedation. It took a few weeks for all the stitches to drop out and you do have to be careful about hygiene until your insertions scars have completely healed. So whilst it’s ok to swim with a port you can’t do so until the scars have healed.
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Its natural to start planning the future around possibilities of treatment and wondering how future plans can be fitted around it all. Everybody does it, and we all want to know asap so we can work our lives around it. But unfortunately, the fact is that treatment plans are individual, and at the moment you can’t second guess it in advance as its tailored to you. You may or may not have chemo, and frustrating though it is, you’ll know when they know and you get your next appointment.
So far, it sounds like things have progressed in a timely manner, as in 6 weeks, you’ve had your biopsy, lumpectomy and most of your results, that’s actually on the swift side of things comparatively. I’ve heard it takes another couple of weeks or so for oncotesting, though I don’t have personal experience of this as I was Her2 which can’t be onco-tested.
Also, details such as if you are pre or post menopause comes into play on decisions about chemo. I can see in your head you have already decided you will be having chemo, and are jumping to the next steps of managing it around holidays, when reality is, at the moment, that still might not happen. Fingers crossed for you that your treatment ends up simpler than you think. Hopefully, you’ll get the results and a definitive answer in the next couple of weeks.
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I was told HER2+ would be chemo then radiation. But HER2- gets sent for more studies to determine if chemo needed. So possible chemo, then radiation, or right to radiation.
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Thankyou…I think my coping mechanism thru this now is to expect the worst and be happy if it’s less. I thought I only had DCIS and was looking at lumpectomy followed by radiation….so the invasive part was a bad surprise that of course changed everything. I think my big question will be how fast does this have to happen…does waiting a few weeks risk my outcome?
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@by130 - yes that’s right , her2 needs chemo in order to have the targeted therapy .
They need to work out the benefit to you if chemo if any , so you may need to wait for your oncotype score x
It’s frustrating not knowing at the moment , especially when you want to plan things x
Arty1
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Such is the individual nature of a treatment plan that my her2 had no chemo or herceptin, just radiotherapy. Its nuanced and personal, and maybe I’m lucky to get away with all that, but that remains to be seen in the future.
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The oncotest is for her2 negative cancers only. They can do other genome testing for Her 2 positive, but in my case not, was turned down for it.
Ah, and the likely reason I didn’t have chemo would be being grade 1, as you are grade 3, so that is why you would have. You are getting some good news along the way. Her 2 negative is usually a good thing, as is node negative. I think that anyone who has sat in the results meeting, will relate to the sigh of relief when you find there’s nothing in your nodes, psychologically its a big deal, and big worry, though I know my mother is fine 18 years after having 2 positive lymph nodes and a grade 3. It hasn’t come back for my mother so far.
Though your grade is fairly high, having clear nodes makes it less certain if chemo is required. Fingers crossed.
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Chemotherapy for breast cancer should be started within 120 days of diagnosis and ideally within 30 days of surgery. Waiting longer than 4 months after diagnosis may be linked to worse overall survival.
Hi. I literally just got diagnosed with the same type of cancer as you. Same stage and grade. I had the lumpectomy 6 days ago ( also a bilateral breast reduction at the same time ).
I am meeting with the radiation and medical
oncologists the end of May.
Since my lymph nodes and margins were negative, I don’t think I’ll need chemo.
Wondering why ( as we have the same situation ), that they say you need chemo.
Thanks !