ER positive HER2 negative, delays

Ask our Nurses your questions
1

Hello, I just had a question regarding my type of cancer and my hormones.

My cancer was diagnosed ER positive HER2 negative on 3rd Nov (I originally found a lump in May but it was misdiagnosed and I got another check up in October which led to positive biopsies) Today I am still no closer to getting long term treatment for the estrogen.

An MRI I had at the end of October found a 2nd lump, the biopsy for that came back as benign. But 6 weeks after my lumpectomy on 11th December they told me it was infact cancer. I still don’t know what type that cancer is or my onco score.

I have another operation booked in for the 5th Feb so that my surgeon can scrape the bottom edge of the non benign lump to make sure all the cells are gone.

My concern is my hormones. I am 39 years old. For the last few years my hormones have really affected my boobs, they have been very sore during my periods. And today again due to my period coming both boobs are very sore.

I had clear margins and no spread with my lumpectomy so I know most/if not all of the cancer has been removed but I keep thinking about other cells that might have started turning into estrogen positive cancer since the begining of all this.

I havent had an ultrasound or mammogram or MRI since early October. So who’s to say that there isnt more estrogen positive cells multiplying away whilst I’m still hormonal? Ive still got the same hormones. I wont be given tamoxifen probably for months. How can I be certain these delays havent allowed more cancer to grow?

1 Like
2

@foxgem

I’m Er+ HER - and still waiting my surgery results . Was told 3 - 4 weeks post surgery but that’s changed to 6-8 weeks .

I’m wondering why , knowing I’m Er+ I haven’t been started on hormone therapy from the beginning and I wonder( if they haven’t got it all out ) if it’s spreading round my body x

1 Like
3

Maybe one of the nurses can help with this? I’m in the same boat, and I think from reading stories that they tend to leave hormone tablets until all other treatments have been done but it does make you wonder what those hormones are doing whilst we are waiting……be interesting to find out the reasoning! I’m annoyed with myself that I haven’t asked about it before now :woman_facepalming:t2:

1 Like
4

@loupy

I was told Er+ Her - is the most common form of BC so I’m guessing ( and trusting ) they know what they are doing regarding order of treatment although it is something I would like to know the answer to .

How are toy doing ? Do you mind me asking how far along this journey you are ? ?

5

Hi @butterflywing that makes sense, and after some research apparently it’s usual practice to leave it until after all the other treatments due to the side effects!

I’ve just finished chemo, had lumpectomy already but now facing full lymph clearance at the end of the month - don’t mind you asking at all!

Hope you’re doing ok the waiting for results is dreadful but just take each day as it comes xx

1 Like
6

They know what feeds our cancer and we have to wait so long before they stop our bodies from producing it. Whay side effects are worse than more breast cancer? I realise there’s more to it than that and I do trust the process but it makes me nervous.
My boobs are so sore again today I hate it. It does my anxiety no good :frowning:

7

I’m also ER positive and HER2 negative. I start chemo in a week or two, then my pathway is surgery, radiotherapy and tablets.

1 Like
8

@loupy

I get so confused about various treatments for the same kind of BC.

I’m 60 , had a lumpectomy & SLNB on 5th Jan , still waiting for results. Im praying I don’t need chemo but I can’t work out what denotes why some people with our BC need it and some don’t x

9

@kay8

Do you mind me asking why you need chemo before surgery ?

I’m 60 , had lumpectomy & SLNB on 5th Jan and still waiting for results. I’m confused as to why some people need chemo and some don’t for the same BC type xx

10

Hi I was ER+ and HER2+ and didn’t start my hormone therapy for 8 months after diagnosis. For me I had surgery, then chemo with Herceptin, radiotherapy and then I was given my first prescription of Letrozole.

In my case I was receiving all the active treatment and then hormone therapy. Maybe you will start after your next surgery or radiotherapy if you are having that? I would check with my team, if it was me.

I’m sure the nurses will give you more information.

:smiling_face_with_three_hearts:

11

@naughty_boob

How are you finding Letrozole?

I’ve seen mixed comments about it on here x

1 Like
12

I stopped Letrozole after 15 months and swapped to Exemestane, which is a bit better. I feel like I’m 80. There are many threads on the forum about side effects and how different brands affect this.

Chemo before surgery is usually to shrink larger tumours. I was told I would have chemo first if my tumour was 25mm or bigger. My largest tumour was 20mm so surgery first them chemo because I was HER2+ and needed Herceptin, which has to be given with chemo.

:smiling_face_with_three_hearts:

1 Like
13

@naughty_boob

Thats given me some reassurance ( am hoping to avoid chemo ) . They thought my lump was somewhere between 13mm & 20mm so that’s probably why I avoided chemo before surgery .

I’m 60 so dreading the side affects of the hormone therapy :tired_face: xx

1 Like
14

@butterflywing I had to have chemo following surgery as 4/6 lymph nodes came back positive so chemo followed by clearance and then radiotherapy - but everyone is different depending on size, grade etc

1 Like
15

@loupy

It really is a lottery isn’t it :confused:

Mine is supposed to be somewhere between 1.3 - 2cm and grade 2.( although I’m aware this can change post surgery ) . They said my nodes looked clear on the US so I’m praying that’s still the case x

1 Like
16

No problem. I was told they want to do chemo first to try to shrink the tumor (36mm) in my breast and the cancer in my lymphnodes before surgery, and that seeing how I respond to chemo gives them info for the other treatment and to help prevebt recurrence. Also, the cancer in lymphnodes in middle of my chest cant be treated surgically i think. I never thought to ask if they could do surgery first. I will though.

1 Like
17

@foxgem

Am so sorry your not feeling the best today :pensive_face: . Anxiety is certainly off the scale for many of us ,thank goodness we have each other!

Your strong & you’ve definitely got this ! :flexed_biceps:

Sending you lots of love :heart:

2 Likes
18

Thank you. Yes absolutely we are in it together :heart:

3 Likes
19

Hi foxgem,

Thank you for posting. It is understandable that you have questions about your diagnosis and the timings of your treatment, especially if your cancer was misdiagnosed in May. It is common to feel stress and anxiety about which treatment is right for you and you may find it helpful to read our information on strategies for managing anxiety.

Treatment plans will vary from person to person according to the features of their cancer as you say. As @loupy @butterflywing and @kay8 mention it can be confusing to understand why different people receive particular treatments and it is natural to have questions. All treatment decisions are made by the multidisciplinary team and are tailored to you.

You say that your breast cancer is oestrogen positive and that you are worried that you have not yet started any hormone treatment. As @loupy says hormone therapy is usually given after surgery and chemotherapy are completed. Hormone treatment can be given at the same time, or after radiotherapy if chemotherapy is not required. The aim of surgery is to remove your cancer, and all other treatments are known as adjuvant treatments which aim to reduce the risk of the cancer coming back (recurrence). It is not unusual for hormone therapy to be given some months after a diagnosis of breast cancer. Further mammograms, ultrasounds and MRIs scans are not usually required during your treatment or before you start follow up.

You mention that you don’t yet know what type of cancer you have, or the results of your oncotype test. The best people to answer your questions are your treatment team as they will have access to your notes, know the pathology of your cancer and be able to explain your oncotype results. If you have a breast care nurse it would be a good idea to contact them as @naughty_boob suggests. You can ask them to meet with you so that they can explain your treatment plan.

It is understandable that you worried about the pain you are experiencing with your periods, but it is not uncommon to experience breast pain as part of your normal menstrual cycle .

You may be interested in our support tailored specifically for younger women with primary breast cancer who are aged between 18-45 years. This includes our Younger Women Together events that are run face to face and online. This support offers the opportunity to meet and share experiences with other younger women and get expert information in a confidential space. More information can be found on the links above.

You may also be interested in The Younger Breast Cancer Support Group (YBCSG) which is a private Facebook group run by young women for young women (18-45 years) who’ve had breast cancer. To join, go to Facebook and search ‘Younger Breast Cancer Support Group’ and send them a private message. Some people find talking with another younger woman who’s been diagnosed with breast cancer helpful. Our Someone Like Me service can match you with a trained volunteer who’s had a similar experience to you. They’ll contact you by phone call or email to answer your questions, offer support or simply listen. You can ring the Someone Like Me team on 0800 138 6551 or email them at someone.likeme@breastcancernow.org so they can then match you to your volunteer.

Do call our helpline if you would like to talk this through or have any further questions. The helpline team have time to listen, talk things through and signpost you to additional support and information if necessary. Your call will be confidential, and the number is free from UK landlines and all mobile networks.

Our number is 0808 800 6000. If you have hearing or speech difficulties dial 18001 followed by our number and the call will go through Relay UK. Our helpline has access to telephone interpreters if language translation is required.

If you would prefer one of our nurses to call you. Please complete this form ticking the box agreeing to a call back.

Our usual opening hours are Monday to Friday 9am - 4pm and 9am -1pm on Saturday.

Out of hours you can leave a message and we will call you back when we next open.

We’re continually evaluating this service. If you want to provide feedback, please click the link to complete the survey . It should take approximately 10 minutes.

Best wishes,

Katy

Breast Care Nurse

Please read the disclaimer Full details on how we collect and use your data can be found in our Privacy Policy

As we are unable to monitor for further replies, this thread will now be closed. If you have any additional questions or would like to provide feedback, please start a new thread, call our helpline, email us or request a call back.