I was diagnosed with breast cancer in Jan 2020. Had lumpectomy and lymph node removal (one only as it had not spread). However not once did the oncologist or the consultant suggest PET scans, blood tests or any other tests to see if it had spread. I get that "normally" it spreads to the lymph nodes but not always. Am I wrong to feel that they should have explored all possibilities? I hardly go onto this site as I have not wanted to talk about it or hear anything about cancer, but have started to become a little more brave! Reading posts have now scared the living daylights out of me as it seems everyone has had further tests to ensure that the cancer had not spread.
The first op did not go too well. Had multiple infections and the consultant did not remove the MINIMUM margin around the lump. Had the second op and they had to leave it open to heal from the inside up. Walked around with a stoma bag stuck to my breast for weeks.
I had 5 days of radiotherapy and that was it. Been back to the hospital at least 8 times in the last 15 months with excrutiating pain and told that the pain is "normal".
Been on Letrozole for 14 months. My joints ache and I am absolutely exhausted every single day. This is, according to the consultants, normal.
In the last six months my left wrist has been really sore. Not sure if torn ligament or something more sinister is going on but like hell am I going to the doctor. Not that I can get an appointment with the GP. They will ONLY see you if a face to face appointment is crucial.
I cannot take any more time off work to sit at home praying that the GP will see me that day. My drive to work is 45 minutes meaning that if the GP makes an effort to see me that day, I need to leave work, drive to the GP (45 minutes) wait for the appointment (30 minutes) and back to work (another 45 minutes). Lucky if I get a 30 minute lunch break let alone 2 hours off for an appointment.
I suppose my question is: Are further tests standard procedure to rule out all possibilities of the cancer having spread? Secondly, could Letrozole cause damage to muscles (perhaps I hurt my wrist but it is not healing because of the Letrozole)? Thirdly - will the pain ever go away?
I am ready to give up!
Hi Genmidvrees welcome to the forum and it sounds like you have been through the mill over the last few months with so many different hings happening for you but please don't give up things can only improve and get better.
Normally the Sentinel Lymph Node is taken during a Lumpectomy and tested and if there are not Cancer cells there than it had not gone any further and that's the Theory of that. PET scans and further bloods are only taken and used when there is some thought that there may be spread but as the sentinel node biopsy was negative this would not seem to indicate having these done if that makes sense.
That second op is not unusual in that this often happens if not enough margins are taken in the first instance. However, having to leave the wound open is not one I have heard of before it is usually closed with a drain in place.
I understand that the 5 days of Radiotherapy is the way that things are moving and the dosage given is in larger doses each day so the amount given is as required but given over lesser days if that makes sense. I'm wondering though at the excruciating pain and what this could be as this is pretty unusual after Radiotherapy it is more common I think for pink skin or burns as examples.
Sadly the part about the aches and pains with Letrozole are in fact normal for this drug and not in the least bit pleasant for you either bit doesnt seem to ease any during the time we are on this drug.
I hope that some of what I have replied with is of use for you and also hope it has offered some reassurance and hope that whilst things might feel difficult, please don't ever give up you have come this far and are almost at the place where the light is visible at the end of the tunnel. We are here and will support you as much as we can. xxxx
gail
