Hi, I’m not sure if this is the right place to post this, sorry if it’s not. MY Mum was diagnosed in the summer with a very large tumor, 10cm and 1 lymph node involved. She had mastectomy and lymph nodes removed and then had rads and she is now on Letrazole. She didn’t have any chemo, it wasn’t offered but I’m not quite sure why.
At no point has she had any whole body scans, pet scans or one scans. Now she has a really bad cough, for ages and also pains in her back and hip. She’s constantly tired and looks unwell. Her oncologist also felt a lump above her collar bone and referred her for an ultrasound which she went to but when we got there the sonographer said that she had been referred to the wrong department as she did not deal with breast cancer but she said she would have a look anyway. She did the scan and after a while said she couldn’t see any lumps anywhere (?!)
After this my Mum was satisfied that all was well and although another appointment has come through for an ultrasound with the right person Mum has said she is not going to go as she’s already been told there’s nothing wrong.
The problem is she is really depressed as we lost my brother over Christmas (her son) and I think she’s past caring about the BC.
Is it normal not to check for mets when someone has such a big tumour and lymph involvement? It just seems a bit strange.
Hi Josie
Sorry to hear about your mum.
I’m guessing she’s on Letrazole because she her BC was hormone positive. Sometimes hormones are tried first and the big guns of chemo kept for later in case they are needed.
I’m very surprised that she hasn’t at least had a CT scan. I would definitely push for one with the onc and personally, I would also ask for a second opinion.
Laurie x
Thanks Laurie, yes it is hormone +++. They originally said the tumour was 2 cms but then when they did the MX it was 10cms, basically the whole breast and there were no clear margins. I think if they’d known it was this big they wouldn’t have done the MX from what I’ve read, they would’ve done chemo first.
Thing is she doesn’t have any more appointments booked in with the hospital at all now and she is resistant to making any. If she did have mets somwhere they might be getting worse without treatment or would the letrazole be keeping them in check?
I don’t want to worry her or upset her.
Hi Josie74
I am sorry to read of your Mum’s diagnosis, its sounds like you’re having a pretty difficult time at the moment. Can I suggest you give the BCC helpline a call and talk through the concerns you have about your Mum with one of the trained members of staff, who are there to offer emotional support as well as practical information. The free phone number is 0808 800 600 and the lines are open Monday to Friday 9.00 to 5.00 and Saturday 9.00 to 2.00.
Best wishes Sam, BCC Facilitator
Thanks I will try that.
The other thing I forgot to ask is that my Mum has hard lumps on her forehead that have grown over the last month. I googled it because I thought they might be skin mets but I couldn’t find anything about mets to the face so I thought it must just be something else. But then I read on this forum about 2 people who have had skin mets on their face so it may be that. The lumps are strange, not like spots or bites, more like warts that are under the skin.
I’m just not sure how to say to my Mum that I think she needs to go back to the doctor, GP maybe to start with? But she really doesn’t see there to be a problem. And maybe I should just keep out of it, and not interfere?
I just worry that if it is a problem then getting treatment soon will be the best thing.
Hi Josie74,
I’m so sorry to heat about your mum’s dx, I’m also think your mum should seek another opinion with an oncologist. There is obviously something going on as the pain and lumps are indicators.
I know your mum has been through the worse experience of losing a child, I can’t begin to even image what she’s going through. But maybe if your tread with baby steps about see her gp this may help especially if she has a good relationship with them. Then get them to refer her. I know unltimely this is her choice
I think you are in a awful dilemma and it must be terrible to see your mum go through so much angst.
Take care of yourself and I’m sending you positive vibes and thinking of you both.
Love
Chris xxxx
Oh, Josie, I’m so sorry to hear about your situation. You’ve just lost your brother and now you’re obviously worried about losing your mum, too. Have you told her this? Maybe she will be able to find the strength to fight for your sake if not her own.
In lots of parts of the country, it’s not routine to scan at initial diagnosis, even when the tumour is a large one. My tumour was over 8 cms and, like your mum, I had one node involved but didn’t have any scans, for example.
The lack of chemo post-op seems strange to me, though. I think you need to ask questions about this, but if your mum has gone into shutdown mode, this may be difficult for you to do with her onc. Perhaps someone will be along here to explain why chemo may not have been offered, but if not, I would definitely call the BCC helpline to ask why this may be the case.
The fact that the onc referred her for an ultrasound which hasn’t really been done may work to your favour, though. Do you think you could contact your mum’s onc, explain the situation and your concerns and ask that they send her an appt. to see the onc? And if so, do you think your mum would be willing to go along to an appt. with her onc? If so, I would then try to push for scans - CT and bone, given the problems your mum is having.
I really hope you can get answers to your questions soon and that any scans your mum has will come back clear. Good luck to you both. Hugs, Angelfalls xx
Josie, I really do feel for you. What a lovely daughter. It could be that blood tests and examination of your mum has shown her to be strongly oestrogen positive. If this is the case hormone therapy is prescribed. They may think that would be a gentler treatment to chemotherapy. You don’t mention mums age or general physical condition, that too could influence the use of chemo.
I so hope all goes well for her and you get some answers. Do ring the Helpline tomorrow they can talk things through with you.
Big hug
Cackles
Thanks Angelfalls, Chris and Cackles. Yes it’s been an awful time for us.
Mum is 78 but acts a lot younger, she’s very independant. FOr instance after her mastectomy and lymph dissection she was told not to drive for 3 weeks but she took no notice and just started driving the day after she got out of hospital(and digging the allotment!)She took HRT from the age of 55 to 77! The chances are that’s why she got the BC. Also both her Aunts had it too.
As you can imagine, it’s not easy telling her things sometimes. Also she generally only hears the bits she wants…
I’m even more worried about my Mum as she has been quite ill over the weekend with dizzy spells and vomiting, took her to A and E as she could hardly walk and the doctor prescribed anti vertigo pills… still no scans or anything have been done. Also her memory has been bad and her next door neighbour mentioned to me that she had been very forgetful.
She has an appointment with her GP on Thursday but in the mean time if the dizzy/vomiting gets worse I suppose I will take her back to A and E.
Are you going to the GP with her, Josie? I hope you’re able to as it sounds like she really needs you or someone there with her. It might be a good idea to write all these symptoms and concerns down and take your notes with you so that you remember everything during the appt. And I think you’re right - if there’s another episode you’re concerned about, take her straight to A & E. I wish I could be more help. Sending you (((((Hugs))))) and hoping you get answers and some relief for your mum very soon, Angelfalls xx