Losing my mind over ILC

Life after a breast cancer diagnosis Coping with fear and anxiety
21

Hi @pat
It was strange. I had only 25 minutes appointment. I felt like I wasn’t heard.

She ordered extensive blood tests but refused oncotype or oncotest. I had to ask again for PET scan - not sure if this will happen. She didn’t actually mention what exactly is my stage. She gave my samples of products for vaginal dryness and leaflets about ILC and letrozole.
Kind of “wtf moment” for me.

It looks like they assumed that cancer is removed even though my extreme fatigue is still unexplained. Because of that fatigue I am not able to get chemotherapy.

What I haven’t mentioned before I have clinical depression with anxiety and panic disorder. I had traumatic event in 2017. I am not getting any help from NHS in that matter - now oncologist said that my mental health is the reason of fatigue and I need to get on antidepressants first - before starting hormonal therapy.
She told me to contact GP for this.

I did this. Starting mitrazapine this week. Tried SSRI before and this send me to hospital.

Summary - I am no wiser, waiting for blood results and not sure how they can assess what stage I am without a scan.

I have another appointment on 20th February and I am trying to find advocate who can go with me because it feels more surreal with every appointment.

I am complex case, I know that my mental health issues exists, but I am not crazy and I deserve treatment with biopsychosocial approach.

I never felt so worthless in my life. My abusive ex husband haven’t brought to my knees as this situation.

22

My understanding is that Oncotype test is only carried out if there is no lymph node involvement since it’s used in part to decide whether to treat with chemo and spread to lymph nodes would usually involve chemo anyway - hope this makes sense.

I’m taking mirtazapine and have found it to be really helpful getting through the past six months.

Hope you are able to get support for your next appointment xx

23

I haven’t had oncotype done and haven’t been told the stage, only the grade which in my case is grade 3. The oncologist said that there’s no point in doing the Predict test for me as I had chemo first which may skew the results.

So, it may be that there are other things involved which we aren’t aware of.

24

@lynnc123 @pat
Thank you for replying
I wish oncologist talk to me that way and explained all this. Sorry for bothering you.

It is really hard to make informed decision without informations :confused:

I still think that PET scan would be appropriate tool to actually tell me what stage I am.

I know that treatment will be the same but outcome - completely different.

Stage 3 - it might give me more time and might justify horrendous treatment.

Stage 4 - is it worth it to go through hell to gain 2 or 3 months with no quality of life?

Sorry, I feel stupid for taking your time with my “what if”

25

Please don’t be sorry, we wouldn’t be here if we hadn’t all been at the stage where we have no clear idea what is going on and are scared as to what the future holds.

I saw my consultant yesterday for my six-month check up and we were laughing with the breast care nurse about how totally panicked and speechless and shocked and hysterical I was in those early weeks before having the op and finally getting results.

Even now, I have days when I play the ‘what if’ game and wonder what if they missed something (didn’t have scan and relying on feeling mastectomy scars and lymph nodes for any recurrence—— I missed my lump while it grew to 32mm so can’t say self-check has worked for me so far :flushed:).

But I did find that diazepam calmed me down and mirtazapine helped me sleep and be less anxious and somehow I’m six months on complete with battle scars.

Please keep sharing your questions and thoughts xx

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@lynnc123 I found a lump in my armpit when in the shower which turned out to be a 4cm cancer in the lymph node. I hadn’t even noticed the 3cm breast lump :see_no_evil: I simply couldn’t believe I hadn’t noticed them before.

Following diagnosis I had a CT scan to check for further spread. By the time I got to the results appointment I had convinced myself that the cancer had spread to every cell in my body and that I would probably be dead by the end of the week! I totally agree with lynnc123 that waiting for tests and results is the worst time. Once a plan is in place it does become easier.

@kateunlucky please don’t worry about posting if you want to and if it helps you. I kept wanting to know my stage initially but as time has gone on I’ve realised that actually it doesn’t matter. Treatment for breast cancer is now very well researched and international protocols are laid down and agreed upon for the best plan for each individual. It is very complicated and while you may appear to be in one category you actually may not be to those in the know, ie the doctors. It’s a good idea for you to get some mental health support at this time - well done for seeking that. The tablets may take a bit of time to kick in but should be able to help you see the wood for the trees. Remember too that having tests means that you have to deal with what is found. The CT scan showed up a large fibroid in my uterus. This needed to be checked by ultrasound which showed a thickened endometrium. This needed to be checked by hysteroscopy which couldn’t be done in the clinic so I needed an anaesthetic :roll_eyes: Eventually all was OK but there was a whole cascade of anxiety and further tests because of a coincidental finding on CT. I wished it had never been found! The doctors have to weigh up the costs and benefits of doing a test.

Lastly, all is not lost. All is never lost. 18 years ago my niece in law was diagnosed with breast cancer 3 months after her first baby was born. It had already spread. Since then she has had periodic treatment of various sorts and had maintains a good qualities of life including having 2 more babies!

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27

Hi @kateunlucky

I just wanted to repeat what others have said already. The forum is always here for you and you can always share your feelings and thoughts.

Our nurses can also answer clinical questions or chat through your concerns. You can get in touch with them here on the forum on the Ask our Nurses your questions board, or on our helpline 0808 800 6000 which is open Monday to Friday 9am-4pm and 9am-1pm Saturday.

I’m so sorry to hear about what you’re going through with your mental health along with the uncertainty of your treatment. Macmillan offer free counselling sessions for people with a cancer diagnosis, that you may be interested in looking at if you’re struggling for support from the nhs: Free counselling for people with cancer | Macmillan Cancer Support.

Sending our warmest,
Lucy

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28

Hi
I had sessions through Mcmillan, four - that’s all they can offer. Once a month I have a meeting with oncology psychologist.
I am starting mitrazapine on Friday, I hope it will help.

I am just scared that with 19 lymph nodes with metastatis and extranodal spread, waiting another 3 weeks for any treatment is too long and might be too late.

It means that it is beyond lymphatic system but I might be wrong.

I had diagnosis the end of August and all I had so far was double mastectomy in November and axillary clearance in January. It doesn’t sounds right. But again - I might be wrong.

After mastectomy I felt fine.
Axillary clearance made me disabled and not fit for chemotherapy. I can’t bounce back. That fatigue is unbelievable. Going to hospital in taxi feels like 48 hours shift in a coal mine. I am unable to do anything, eating makes me tired. I have maybe an hour a day when I can do something.

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29

Did you have all 3 levels of your lymph nodes removed? In what way has the clearance made you disabled? I am trying to find someone who has had all 3 levels removed but nobody seems to know. A standard clearance is levels 1 and 2.

30

Hi
What says on my histopathology final report is- Revised staging pT2 pN3a (19/19)

It wasn’t explained but doctors to me but from what I have found out it was on level 3.
“pN3a” typically means cancer has spread to Level 3 nodes, which are closer to the collarbone.

It looks like my gut feeling was right and finally I am referred for PET scan.

It is bitter sweet victory because now it is tad too late. I wanted this scan before operation - pet scan would pick up that 19 lymph nodes with metastatis also check for distant metastatis.

I could have been spared operation but have chemotherapy first. Now I am too weak for chemotherapy.

I am not sure if I am explaining myself.

It is almost a month after surgery and I still can’t leave home, as walking more than 5 meters is too much.

My oncologist blames depression and told me to go to GP for antidepressants.

I don’t understand anything anymore.

31

So you had level 3 nodes removed? Are you saying the op has caused the problem with walking or as the cancer has spread which could have been caught earlier if you had chemo first?

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@kateunlucky I had chemotherapy before my surgery. In my case they did it because the tumour in the axilla was 4cms and the surgeon felt that taking out such a big tumour may cause alot of damage to surrounding tissues and nerves, and would increase the risk of lymphoedema enormously. I just wanted the cancer out of me asap, as you had, but accepted the reasons he gave for the delay. The chemotherapy shrank the axillary tumour from 4cms to 1.5cms but had absolutely no effect on the tumour in the breast. So chemotherapy doesn’t always have the desired effect and the quickest way to remove the cancer, and therefore reduce the risk of spread, is by doing surgery asap, which is what you had.

33

My situation was /is a bit different.

I had double mastectomy and sentinel node biopsy in November 2024.
Main tumor was removed.

Biopsy came back with 3/3 nodes with metastatis and with extranodal spread.
This indicated high possibility of further / distant spread.

After getting those results I have asked for PET scan, to see if there is distant metastatis, because if there is - it might be more beneficial to start chemotherapy instead of doing axillary clearance for diagnostic purposes.
“Check before you cut” situation

I Was refused scan, as it doesn’t comply with guidelines, and we proceed with axillary clearance.

All 16 lymph nodes came back with metastatis and extranodal spread.

So now after 19 lymph nodes and its surrounding tissues involved means that chances of distant metastatis is very high.

I have very difficult recovery from clearance and this delays starting further treatment, as I am not fit for it.

Now they agreed that PET scan is needed to assess situation.

34

So from what you say you had level 3 nodes removed so what problems did you have recovering? I am reluctant to have level 3 nodes removed which my surgeon wants to do due to the side effects. She said if it comes back it will be impossible or hard to operate as I am small in that area but she doesn’t think its in my nodes.

35

@Linda_Corinne
As you can read in my previous post I was reluctant as well.
That is why I was trying to get PET scan before.

Operation itself was similar to double mastectomy I had earlier. Pain manageable with paracetamol, after 48 hours I’ve added ibuprofen.

Arm was much more stiff this time and felt like I have no control over movement of my arm in up direction.
Funny feeling - in my head I really thought it is up and straight, but in mirror it looked L shaped and hardly on my head level. But this went away after a week, and some gentle exercises helps. My cording came back but it “snapped” yesterday.
I had drain for 10 days, a bit of inconvenience, I used small bag ( across body tote bag I got from breast unit) to keep drain bag in.
I am wearing compression sleeve (bought on amazon, I do not know if it is allowed but I can send you link)

My main side effect was ( and still is) extreme fatigue. I can walk and do other things but my energy levels are none.
Had blood tests and all came back OK, so it’s a mystery.

It might be body adjust to change in lymphatic system, recovery or cancer is still left in me and my body is fighting two battles - Cancer and post op healing.

Unfortunately lymphoedema is not something you can predict. Avoid sun, scratches etc, I can see that my skin is very dry so moisturiser is must have.
So far I have no signs of this.
I was referred to physio but I am too weak for it now.

I am on smaller size 160 cm and 49 kg, apparently high bmi increase risk of lymphoedema.

There are long term consequences -with less lymph nodes your autoimmune system is a bit compromised but I can’t comment on this now.

Not sure if I helped.
You can ask for PET scan

( I had mri and ct and they didn’t pick up anything because I am invasive lobular breast cancer - it doesn’t form clear looking tumors but creates web. PET scan is picking up not images but energy activity of cells, cancer cells are very active because they run on powerful fuel - sugars. That is why pet scan is more proper tool for ILS)

Sorry if it is not helpful or clear, English is not my first language, apologies

36

You only had your op this month so you will hopefully feel better in the next few weeks. I am worried that removing nodes will cause long term problems as your immune system will be compromised, lymphadema, swelling, pain, use of arm. I have booked to get a 2nd opinion but I think he will prob just say the same thing but we’ll see I guess.