Given all clear re Lymphnodes 8 months ago, but sentinel node biopsy didn’t work, now they have found cancer! Has anyone been through this?

[ikikuru]

Hi, My wife was diagnosed with BC, she had it removed and had a sentinel node biopsy, was all clear. 8 Months later an ultrasound revealed cancer in a Lymphnode. She just had 8 nodes removed and they found microscopic cancer in 3 other nodes. They are sure it was there from the start. They have tested it and it’s Estrogen positive as was the original cancer. We are not sure what to do now, Radiation Therapy seems harsh and will likely give her Lymphdema and cause lots of scar tissue (she has a real light build) this will severely affect a possible reconstruction, also worried about the effects on the Heart as it’s her left side. At the moment she has an expander still in. She has no suitable fat on her body to aid a reconstruction. They are not sure about efficacy of Chemo at this point. I’m hoping it can kill these microscopic traces though, for some reason I’m thinking it could have less long term effects than Radiation Therapy, but I have no clue!! She desperately wants to try alt therapies as she is so put off by all she has read about the possible side effects. Anyone here had a similar case?

[Happyrosie]

I don’t have anything to offer the two of you except my sympathy, and I’m sure other contributors to this site feel the same,

[scarlet12]

Hello, so sorry to hear about this as it must be such a shock when you thought everything was done and dusted. There's a lot of advice and support out there to help with decision making in terms of treatment. Have you contacted MacMillan or Breast Cancer Now to chat to the specialist nurses? Have you spoken with your wife's specialist cancer nurse? Radiation therapy does not mean she will get lymphedema and if she has had her axilla nodes removed they will be wanting to direct radiotherapy at the collar bone (next level up of nodes). As for left sided radiotherapy the breath technique can be used and this enables a patient to prevent radiation reaching the heart by lifting the ribcage away from the heart when radiotherapy is administered by holding your breath. Please discuss your concerns with a qualified professional to fully understand the risks involved but personally for my BC (er and pr positive) I had rads and chemo as wanted to do everything possible to prevent recurrence. Chemo is doable, and if the cancer has spread to nearby lymph nodes it's usually recommended as standard therapy to mop up any stray cells. Also, with her cancer being ER positive there will be further hormone meds your wife can take to lower chances of recurrence by lowering her oestrogen levels. These include tamoxifen, or one of the aromatase inhibitors. There is a LOT that can be done so please do talk through your wife's treatment options with her oncology consultant and her team, which should include a consultant radiologist.

[ikikuru in reply to scarlet12]

Thank you so much for the response and I’m so sorry to hear that you have had to go through this! We are going to see the oncologist tomorrow, (last time we saw her we had the all clear) We saw a Radiation Oncologist. She was nice enough but to be honest it felt like she was just reading of a leaflet which she was, like she wanted to gloss over things. But she did definitely talk about the breathing exercise to protect the heart! Apparently they had a multi disciplinary meeting where her case was discussed, we will find out more tomorrow, but I think there was some discussion as to the efficacy of chemo in this instance, but I think they were agreed on RT. What I don’t understand is that if Chemo is meant to kill cancer, and from what we’ve understood it works at its best on microscopic cancer, why do you need the RT as well? I’ll ask that tomorrow (:

She’s been taking DIM, and we’re cutting all the bad plastics that contain synthetic oestrogen (never knew it was in so many places) but who knows how effective that will be, just seems good to be doing something! Anyway, sorry I’m waffling, it just feels like such a release to be able to talk to people. Friends ask how she is doing, but you kinda know most of them don’t really want the whole story. Which I fully understand!

[scarlet12 in reply to ikikuru]

Hi, I just wanted to come back to you about DIM. Be really careful about supplements with having had an oestrogen positive cancer. DIM does have oestrogenic effects in the body so if it was me I would steer clear of anything that effects even the so called 'good' oestrogen. Further on the chemo, I am surprised you are being told that there is some discussion around the efficacy of chemo. When cancer has spread, as it has in your wife's case, it needs a systemic treatment to reduce the risk of cells in the blood stream moving to and settling in other parts of the body. I had 14 lymph nodes removed and only 2 were positive but still had chemo and my cancer was very strongly hormonal (ER8 PR8). However if an oncotype test has been done on the tumour and it indicates chemo is less likely to be effective then in those cases (only) the patient can choose to decline treatment and the oncologist will give their input on interpreting those results. Personally, I was young and wanted to do everything possible to reduce the risk of recurrence. As regards radiotherapy and chemotherapy, as explained, chemo is a systemic treatment (treats the whole body) and rads is a local treatment (it is applied to the breast only and occasionally can be applied to axilla lymph nodes in place of surgery and/or to next level up at collar bone to lower chance of recurrence). Please do ask questions and push for the best treatment options.

[ikikuru in reply to scarlet12]

Hi Scarlet,

Thank you for taking the time to respond. I think i need to look more at the DIM, she is seeing a medical herboligist (not sure if that’s the right term) this person is a medical Dr and specialises in complimentary therapies. this may have been recommended at the time because based on the first diagnosis Tamoxifen was suggested but even the oncologist saw limited benefits. They did the on line predict test in her original case and it showed I think less than 1% difference in survival. Of course things are different now!! All they keep telling us is that she is a rarity. The original tumour was only 5mm, so it should not have spread but it did. The sentinel Lymph node biopsy was negative, but it was in the nodes (apparently that test is 97% accurate) They keep telling us things are not behaving as they should which is scary if course. They still don’t seem to see it as overly aggressive but are classing it as more moderately aggressive. I’m not sure about the discussion around Chemo. Apparently there were 6 oncologists at the session (is there a term for so many, Flock? Herd?) and there was some debate. However from the appointment we had she is recommending Chemo and says some opinions did change after the meeting when some of them thought more about her case. They are now recommending Tamoxifen and the aromatase inhibitors you mentioned as well as radiation therapy. I’ve added more below in a new comment.

[scarlet12 in reply to ikikuru]

That's good, I think in cases where the cancer has spread it does need local and systemic solutions. Tamox is oestrogenic in some parts of the body, but not in breast tissue, it can be used alongside zoladex injections to further lower oestrogen. A combination of an AI and zoladex injections would take oestrogen down to virtually nothing. This role is often claimed for DIM, but it does not have the years of efficacy studies the more conventional approaches have. I know it's difficult and overwhelming but you both will find a way through! X

[Hidden]

Hi there

Sorry to read about your wife's diagnosis, she is clearly lucky to have your support who has taken the time to reach out for advice.

5 years ago I was diagnosed with primary breast cancer on my right side, aged 34 also hormone positive, a biopsy upon initial appointment also later proved positive of cancer in sentinel node. I was told given my age that I would 'have the book thrown at me' with all treatments, chemo first to shrink, mastectomy months later, herceptin and radiotherapy. I had 3 weeks (5 days each week) of radiotherapy. Out of all treatments this was by far the easiest and the kindest treatment I had with no long term side effects, in the short term I only had slightly red itchy skin in the area. I am a slim person, I only mention as you say your wife has no suitable fat for reconstruction. I had an expander put in place at time of mastectomy, ended up having the actual implant 2 years and 2 months after mastectomy, my skin was completely unaffected by radiotherapy and my surgeon was delighted with the results.

I see you mention your wife is the left side, I know that this can be more concerning regarding the affects of radiotherapy on the heart. It is recommended, but from what I have researched not always implemented, at least not in every hospital within UK, that the patient has to be taught a breath holding technique prior to having left sided radiotherapy as this reduces the side effects on heart. A quick online search will arm you with more info on this.

I have so far never suffered lymphedema and I have had a lymph node clearance on right side.

I hope this helps you a little and wish you both well.

[ikikuru in reply to Hidden]

Hi, thank you for taking time out, and I wish like everyone here you and everyone else was not going through this. My wife is 45 and we thought that was young! Really appreciate you telling your story, I know everyone is different, but hearing that RT did not hit you so hard is reassuring. My wife has been doing so much research, but it feels like sometimes google reveals many more worst cases than just regular and good cases if that makes sense! We’re you advised to do any exercises or take precautions re Lymphdema?

[Hidden]

Apologies for repeating info regarding radiotherapy on left side, I now see poster above has mentioned it too. Site must have a lag in displaying some responses as it didn't show me any other responses to your post when I began my post!

[ikikuru]

Just to all of you, thanks so much, my wife, Lisa (can’t keep saying my wife) is being so brave, and I’m trying to be their with her with lots of hugs, she read in one of the many books she’s reading that hugs are medicine (: just feels great to be able to talk, and I wish I wasn’t here, wish none of you were here. But it’s nice to know we’re not alone!

[carolinenailsea]

I hope you got some really useful info at your appointment yesterday. We are all different but I also found radiotherapy by far the easist part of the treatment. Chemo was tough but do-able and surgery also bearable. I wish you both well going forwards, its a long hard journey for you both but with the best support from the medics and others, I hope it will go well. xx

[Ratbagtazbag]

Hi there! I found my radiotherapy quite tough. I was just so shattered and exhausted but everyone is different. I had 5 sessions of higher dose radiation as opposed to 15 sessions of lower dose. It was good to get it done so quick. Mine was on the left side too so had to do the whole breath holding. It can be tricky but I managed. Feel free to ask me anything if it will help. Take care and give my best wishes to Lisa. X x x

[ikikuru in reply to Ratbagtazbag]

Thank you so much for your thoughts and kind offer. Think I’m going to annoy all of you unfortunately with this one

[ikikuru]

Thought this was the best way to update, and I’m sorry because I already feel like I’m taking up to much air time, but this seems like the only real outlet at the moment. So if things are not bad enough with the diagnosis!!!! She’s really struggling with all of this. It’s REALLY not helped by the fact that she’s never been a fan of pharmaceuticals, I mean of course when it’s really needed she will take them, but she will rarely even take a paracetamol, after surgery she took things for the minimum time possible. I don’t know it’s just her. She was all set on getting fit and being as natural as she could after the first diagnosis and surgery. So, she’s SO not ok at this point with what’s on the table. She’s scared of the side affects (more long term) She’s worried it will have such an impact on the quality of her life. She feels like she’s being backed into a corner. She’s smart, I’m pretty sure she knows what’s at stake, she’s just scared and is not ready yet. She’s been reading a lot, one book in particular Radical Remission, Surviving Cancer Against the Odds, I don’t doubt everything in their is true, it’s just there is no real science behind it.

I guess you guys can relate to some of this, though I fully get and am inclined to agree with the stance that yes she’s young and she will get through the treatments. I’m trying to tell her that the real bad things are the absolute minority things like cancer in the uterus (is that a possible tamoxifen side effect) are like 1 or 2 %. But I think as she’s already been in the unlucky 3% she’s even more afraid. I get it I really do, and I know you guys have all had to think about this. These treatments are frankly barbaric, but currently they are all there really is. I DAMN well hope in 10 or 20 years this will all be different!!! So right now, she’s scared, and I’m scared of what she may choose. The one thing I know about my beautiful wife is no one can make her do something she doesn’t want to do. I will support her the best I can whatever she chooses and she will choose to fight, that much I know!! Just got to give her some time and space.

Really appreciate this outlet!!!

[Ratbagtazbag]

Sounds like you are being the best supportive hubby possible. I know side effects are possible with anything and always vary so much with individuals and I know some can be as bad as the cancer itself. We all have to make our own risk assessments in life and weigh up the pros and cons and you’re right only your wife can decide as it’s her that’s going through it. No need to apologise and you are no way taking too much air time. That’s what these groups are for. X x x

[ikikuru in reply to Ratbagtazbag]

Thanks, through all of this I’ve re-connected with a friend from Uni and found out she went through a breast cancer battle in her late 30’s. In terms of the risks etc she said her specialist told her that If you’re healthy and continue to lead a healthy life style, your more likely to live a long life after beating cancer than if your an unhealthy person who’s never had cancer. Kind of hit home a bit. I’m trying get her to see that all the research she’s doing on other treatments is well worth it because it may help stop it coming back! At this point she’s still figuring it out. Just going to do what I can to help!

[Dimsdale18]

Hello. I’m so sorry to hear about what you are both going through. I am the Breast Cancer Helpline Manager for SHARE, a non-profit cancer support organization. Everyone on our volunteer Helpline has had breast cancer. Your wife can reach out and speak to someone who can guide them to resources that are the most current and accurate. We also have a network of peers we can call on that have experienced a similar diagnosis. We have support groups and educational videos as well as links to clinical trials. You can reach us by dialing 844-ASK-SHARE (844-275-7427). And my word of advice is stay away from Google. It’s overwhelming and full of outdated or inaccurate information.

Regards

Dale