mum doesn’t want maintenance treatment

[Rosefence]

Dear lovely ladies,

My mum finished her first line chemotherapy treatment (she has 3a2 hgsoc; hrd negative); avastin was stopped after the first cycle because she had a bacterial infection that caused stomach bleeding (and avastin was never reintroduced after that). Other than this experience, the chemo went rather well.

My mum now thinks she is healed and doesn’t need maintenance treatment. Also, her oncologist doesn’t recommend it because, as he told me, « the last two older ladies he treated didn’t tolerate it well » and because of this one instance of internal bleeding.

I am not an expert but the stomach bleeding was caused by a severe bacterial infection (which was treated), and I was even surprised to learn that Avastin was not reintroduced after this. I don’t understand how it has any bearing on the current situation. My mum doesn’t want to go to another oncologist as she trusts him but I am worried she may not be getting the best care. What are your thoughts on this? What would you do?

thanks so much!!

[Schnauzer19]

I think I’d definitely get a second opinion if it were me. Just to be sure xx

[Rosefence in reply to Schnauzer19]

I completely agree. But it’s tricky because she doesn’t want to seek more advice/she just wants to trust that oncologist and believe that everything will be fine. Is there a “deadline” by when the maintenance treatment should be started? Maybe she would be more receptive to talk about this in a couple of months. Right now, whenever I start the topic, she feels like I question that she is “healed”, and it’s a difficult framework to really take any decisions.

[Schnauzer19 in reply to Rosefence]

Yes, there is a deadline, I think you have to start parps within 12 weeks of finishing chemo. I could be wrong, but I’m pretty sure that’s the deadline. Well maybe she’s in a bit of denial about what a bugger this disease can be, it’s a difficult one isn’t it, is there anyone else in your family that could also suggest her getting a second opinion? Maybe that might make her think if it’s more than one person suggesting it? Xx

[Morini in reply to Rosefence]

There is a deadline, but I don't know what it is. My tumour analysis (which would determine which maintenance drug I would have) took too long so I missed the cut off date. My Oncologist would have appealed but we decided not to but I was having Avastin.

[Mford786]

Avestin is associated with internal bleeding , maybe that's why oncologist doesn't want to take any further chances ..do take second opinion if possible x

[DebMac1]

I opted out of Olaparib and Avastin ( I did have 3 with chemo) after frontline. I read the research. The possible side effects with avastin put me off and there was minimum potential gain with olaparib for me and of course the chance of side effects. I'm HRD+ BRCA- HGS stage iiic. I was NED after frontline and hope to be in the 15% of advanced cases who stay that way. After 9 months however my PET scan showed 7 lymph nodes lit up between neck and pelvis but CA125 stable so watching at the.moment. I don't regret my choice at all. Chemo after effects but all told a good 9 months quality of life and noone can say whether I would have had longer if I'd had the maintenance. Very important your mum follows her instincts about what's best for her, especially if the oncologist is not even recommending it. Very hard for you though trying to guide her through. Good on you for being her advocate and exploring her options.

[LovemyJackRussell]

I was taken off Avastin because I had a blood clot (although I also had COVID and they couldn't say for sure that it was the Avastin that caused it), so it does seem to be a drug they are very careful about. I was disappointed at first but I was offered Niraparib instead.There was never any mention of "older ladies" not tolerating maintenance treatment, in fact no one has treated me as anything other than a patient, and I find it a very biased thing for your mum's consultant to have said, I would have felt that he was saying that at my age it wasn't worth the bother of treating me. (I was 68 at diagnosis, but fit & "healthy".)

There are other maintenance drugs and I think he is being neglectful in not trying your mum on something else. The one thing I am always told is that I am NOT cured, I'm in remission. This disease is known for coming back. Does your mum look at this forum? Could you persuade her to talk to the helpline for instance? Or is there someone in the family who could maybe persuade her to consider getting that second opinion?

I have been on Niraparib since the summer and have very few side effects. I'm currently in Switzerland skiing and having a wonderful time. I never thought I would see the mountains again when I was diagnosed, and this time last year (just after my debulking op) I never thought I'd ski again. Everything is a bonus, but there is a lot of life left to live, whatever your age.

Good luck, keep trying.

Best wishes x

[Rosefence in reply to LovemyJackRussell]

Thanks so much. My mother doesn’t use forums and also doesn’t want to know more about the medical details of her case it seems (quite surprising as she is a nurse). It seems that the prism of her thinking that “she is healed” is the only one she can work with. I will try to get a second opinion

[LovemyJackRussell in reply to Rosefence]

That is surprising (for a nurse) but I have met someone who similarly just didn't want to know. Do you have a good relationship with your GP? Could they help? I guess everyone has to follow their own path but it does seem a shame.

[Rosefence in reply to LovemyJackRussell]

Yesterday I made an appointment with an independent consultant and my mum actually said she was happy that I get a second opinion (she said she was too exhausted to look into this and still doesn’t really think it’s necessary)

[LovemyJackRussell in reply to Rosefence]

That is very good news. Well done

[Motiva]

That is not evidence based medicine but an anecdote. I agree with Schnauzer, a second opinion is wise. Your Mum has got so far through the treatment process whilst dealing with an infection.

Maybe trying to reassure her it is for your benefit might be persuasive??

Best wishes,

Frances

[Rosefence in reply to Motiva]

I think that’s a good way to frame it - it’s for my peace of mind! Thanks so much

[SopSinger]

It's her decision. The "best" treatment is what's best for her. There are no guarantees in this business, and if she doesn't want to go through something that made her so unwell, it's her right.

[Trickysite]

I am 78 and had two years of Olaparib from 76 to 78 (70 is the new 50). I was advised against Avastin. I am HGS stage 4. BRCA. I would advise her to get a second opinion. Perhaps you could tell her that you are really anxious for her to get it and would she do it for your peace of mind? Emma x

[Rosefence in reply to Trickysite]

Great advice and idea- thanks so much!

[delia2]

Hi. As others have said, as long as she is well informed it’s her choice, but I would be very concerned about what her consultant said about “older ladies.” There is data out there about treating older women just the same as younger ones.

[Rosefence in reply to delia2]

This statement also really concerned me.

[Rosefence in reply to Rosefence]

Also, she is not well informed and doesn’t seem to want to be well informed. If she was well informed it would be easier for me to accept her choice. It’s difficult to discuss with someone who chooses to believe she is now healed.

[K95m]

I have been on a PARP for 6 years and 7 months. It’s been a rollercoaster , with changes in bloods, I also now have a gene mutation from this drug. I’m seeing a Haematologist for this for the last two years.

She now feels that I am in her view “high risk for Leukaemia and they are putting me at risk”

My Oncologist said 6 months ago that I probably have had “any benefit by now and they are over treating me”

The problem is that if I come off the drug and the cancer recurs then it’s chemo only. I can never go back in it because of how it’s funded.

I’m in a terrible dilemma. I am having a face to face with my Oncologist ( who I’ve never met in person) to discuss coming off but ultimately it has to be my decision.

Would I have taken this drug had I known then what I know now ? Probably.

The long term effects of this drug are only becoming evident now.

Your mum has to make an informed choice and I feel for her. I wish her the best of luck.

Kay